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"Sharing" Our Stories/Thoughts - Along this Path

Remembering Our Babies - Newborn Loss - Known Causes Entries 2002 - 2005


"Our Two Angels" by Wendy (1/4/02)

"Remembering our Angels: Allen & Shannon Markiewicz" by Starlynn (1/4/02)

"Our son Joe" by Sarah (1/6/02)

"Our beautiful daughter, Isabel" by Amy (1/21/02)

"Immanuel David" by Diannia (2/6/02)

"Our Last Angel, Kamerron" by Robin (2/10/02)


"Our Little Miracle" by Margaret (5/17/02)

"The story of Avery" by Janna (6/11/02)..and new arrival 2003! GA

"Tiger's Tale" by Buffie (8/9/02) GA

"Justin Ryan Wogerman" by Lisa (10/13/02)

"Our angel in heaven: Dylan Chevy Cormier" by Lisa (3/1/03) GA

"Forever my son"- a preterm loss by Camille (3/11/03)

"Baby Chase" by Rebecca (6/19/03) - Died soon after birth 25 weeks/hydrops by Rebecca Ingram

"Katlin's Story" by Kelly (1/2/04) GA

"The loss of my last child" by Jeanie (1/3/04)

"Jacob Cole Wright ~ 4-07-04/08-03-04" by Christy (8/24/04)

"Our Butterfly" by Ada (10/12/04)

"Missing You" by Mindy (12/04)

"Our Little Baby Girl, Elizabeth" by Katy (1/17/05)

"Our Miracle, Gabrielle Karisma" by Simone (1/20/05)

"Bailey Owen Miller~06.21.04 to 08.19.04" by Hannah (3/2005) GA

"January Baby ~ Thomas A. Rennecker ~ 1/14/05-1/22/05" by Julie (4/4/05)

"Two Parents at the Age of Seven Teen" by Kara (4/6/05) GA

"My Lil'Girl (our family circle is complete)" by Lisa (9/16/05) GA

"Our Precious One" by Jen (3/21/06)

Our Two Angels

We have experienced two pregnancies which have ended with the death of our baby. Both were remarkably similiar.

Early Prognosis of problems and early death

We found out that Angela, our first child, had some internal birth defects and a genetic problem that would not allow her to live after birth at the ultrasound appointment at 18 weeks. We were given the option of terminating the pregnancy, but after much grieving and confusion, decided to complete the pregnancy.

Information was important

The doctors all thought Angela would be born early, probably before 24 weeks. Well, she wasn't. In fact labor was induced after she was two weeks late. My husband and I spent the pregnancy trying to learn as much as we could about what was ahead. There wasn't much out there for our situation and we latched onto this website, Abiding Hearts and the book, Broken Hearts, Empty Cradle.

Birthplan and special time with Angela

We decided to create a birthplan telling the doctors what we wished for the birth and the minutes after the birth (Angela was only expected to live for 5 minutes or so after birth). We never knew we could have so much imput into a birth.

We asked for Angela to be immeadiately given to me, the mom. Then Dad was to baptize her. We asked for all unnecessary medical needs to be left alone until after her death, so that we could spend the maximum amount of time with her. She was not allowed to be taken away and weighed or measured until after her death. Our main concern was to have either myself or my husband holding Angela at the time of her death. We wanted her to know how loved she was and how much we wanted her.

All of this was accomplished despite my blood pressure dropping very low, the staff let us have time with Angela in a quiet and unobtrusive manner.

She ended up living for 45 minutes, these minutes were filled with more wonder and love than sadness and grief. After Angela's death, we had our families to the room to see and hold her. We kept Angela with us for quite a while, bathing her, dressing her, and taking pictures. This was our one and only chance to parent her and we intended to do it all!

Supportive nurse was important

My husband and I were very fortunate to meet a wonderful nurse at our hospital when I asked about avoiding the labor and delivery classes. She was our liason and encouraged us to communicate our wishes. She even was able to get some of the best nurses for our special circumstances at the hospital for the scheduled induction. Looking back, my husband and I never thought we'd have to do it again, but we did.

Jeremy ~ similar situation

Our second child, Jeremy, was also diagnosed with the same problems as Angela at the 18 week ultrasound. This time we knew what to do and knew how much happiness could still be at the birth despite our son's inevitable death. We did the same things that worked so well with Angela's birth: a birth plan, baptism after his birth, time with Jeremy in the hospital, a time to visit with our families and the baby. Plus, we did the same plan after our hospital stay.

Memorial Service and Visitation

With both children, we had a memorial service/visitation at a funeral home (we contacted them while I was still pregnant and were lucky enough to find a funeral director who had experienced his own infant son's death). We chose the readings and poems to be used by the priest.

The visitation gave us a chance to show everyone what Angela and Jeremy looked like and talk about them. It was actually a wonderful experience with Angela, but much, much harder the second time around with Jeremy.

After the memorial service, we went to the cemetery for the burial. We were lucky enough to be able to have Jeremy buried at Angela's feet in the "Baby Section" of the cememtery (you usually can't pick out a certain location in this section).

Sorrow and grief mixed with peace and a special kind of joy of knowing you have done for your child all you could....

All in all, both of our experiences were mixed with the sorrow and grief you'd expect, but also highlighted by a joy and peace we never thought was possible. We look back on our time with our children and we can't say that we would have done anything differently.

If I have any advice for someone in the same situation, it would be to try and learn as much as you can ahead of time and remember this is your child and you as a parent often know best. Try and find a sympathetic person to be your advocate to help you deal when things get to hard.

May prayers grant you peace,

Wendy and Tom

Angela Dragmen ~ 10/21/99
Jeremy Alexander Dragmen ~ 01/21/01
Died soon after birth

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Remembering our Angels: Allen & Shannon Markiewicz

The hospital where our child was treated : Sacred Heart Hospital;Pensacola,FL & Children Hospital of King's Daughters;Norfolk, VA

Our story: We unfortunately lost two infants to ACD (Alveolar Capillary Dysplasia)or some form of it. There is no definite answer due to the lack of knowledge of this disease.

My first child was born healthy and appeared to be doing well until a day or two before his death. My second child Shannon as well was born healthy and was fine till a day or two prior. The symptoms were the same. The crying and grunting to breath. The color of there skin and the dilations of their eyes.

With our first child it was hard to get anyone to listen to us when my husband and I were trying to get him help. They just said he died of Sepsis. They didn't look into it anymore than that. They also lead us to believe it wouldn't happen again so we tried to have another child. It was the ignorance of the military medical community.

With my daughter, she had very good doctors at Children's Hospital of King's Daughters in Norfolk, VA. They worked very deligently to find the cause and to help us not blame ourselves. We had little family support and needed peace of mind. They did a lung biopsy on my daughter while she was on life support.

They compared her lungs tissue with our sons and felt they died of the same disease. They also used Nitric Oxide an experimental medication on my daughter. It seemed to be working, but by then her heart was too damaged.

Now both our angels are in heaven. We miss them and think of them often still. The pain never goes away, but has eased with time.

We have been told that if we try to have another there is a good chance it could happen again. There is also a chance it wouldn't. After having two infants die one right after another, we believe the chances are too high.

We wish and pray one day to have a child we can love and raise. We also pray for those who have been through the same and hope they find peace. If you have any information on having other children after one has passed away or have done sperm or egg donation, we would be pleased if you would share your information with us. God Bless.

Starlynn and Allen Markiewicz
Allen Joseph Markiewicz II ~ Sept. 5-Oct 1, 1997
Shannon ~ 3/24/99- 4/20/2000
Other/Alveolar Capillary Dysplasia


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Entry#1, Dec. 2001

My son, Joe, died from oligohydramnious (no fluid around him). I have never come across another mum who had a child with the same condition. I was told it occured in 1 in 3000 pregnancies but I have yet to find anyone else. An upshot from this condition is " HYPOPLASTIC LUNGS" please if you experienced the same email me. thank you

Entry #2

Our son Joe

Our son Joe was born at 34 weeks on November 14th 1999. He had been diagnosed with oligohydramnious {no fluid around due to a blocked urethera} at our 20 week scan.

We were due to go to a leading London hospital to have a drain put into his bladder to releive the pressure but this was cancelled. Meanwhile the scan pictures were showing more and more damage to his kidneys and that his bladder was on the verge of breaking point. When we got the appointment through we were told it was too late and that his bladder had already burst and had stopped his lungs from growing. They said the pregnancy wouldnt go beyond 24 weeks, and I was to go home and make funeral arrangements.

We went home in silence both crying for ourselves and for our precious baby boy. I prayed that he would somehow be granted another chance, that a miracle would come but now I realise that it would indeed have taken a miracle to save him.

Bright and early on Saturday 14th November the mild twinges came {I was 34 weeks at this point, so much for not getting past 24 weeks!}. I tried to ignore them as I knew that this was it. I couldnt beleive the time was approaching where I couldn't help him anymore. After all he didn't need his lungs while I was still carrying him.

Just before 11pm I couldn't stand the pain any longer. My heart was breaking, and I didn't know what hurt the most, the contractions or the feeling of complete and utter despair.

I had an emergency c-section, and there he was trying to cry which he did briefly before being whisked off to the neonatal unit. Daddy went with him while I was in recovery.

Two hours later at just after 2am the nurse came in crying she said "he's resting now". My heart sank, and I didn't know what to do. It didn't help that I was numb from the waist down.

They took me to see him the next day, and I sobbed like I never imagined I could. He was perfect, but he was gone. The nurses were brilliant in that they would bring him to me whenever I wanted even if it was midnight.

We had a small funeral for him where he was buried with my parents.

I've got locks of hair and plenty of photos. We`ve also got three older children, and Jack who was born exactly 1 year and 5 days after Joe.

They all say that Joe is asleep in the sky with Nanny and Grandad, and they talk about him nonstop. I hope this will help someone somewhere feel free to email me if you wish to do so.

Marcia's Comments: There is a very loving book written about a little baby boy with this same situation. They did do the surgery and the story is about all they went through and the love they felt for their son, Gabriel. He died knowing as Joe knows that his parents and family love him a great deal.

The book is "Letters To Gabriel" by Karen Garver Santorum, 1998, ISBN: 1-56814-528-4. I just checked and you can order it from some of the catalog stores and our local Barnes and Noble has it. There is also a story like yours on the site under Preterm Diagnosis (see Drop Down box), click on E-mails from parents and then on "Matthew's Story" by Debbie (9/3/98)...Stillborn/blocked urethra & kidney failure. You are not alone in this diagnosis.

Entry #3

"Baby Bauckham" by Sarah (2/23/02)

"Three Years Later...I stll come to this site at least 3 times a week..." by Sarah (2/15/03)

"Mollie has arrived and Joe's 4th anniversary..." by Sarah (1/6/04)

14TH - 15TH NOVEMBER 1999
Died soon after birth/oligohydramnious


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our beautiful daughter, Isabel,

was born 8 weeks earlier by emergency c-section for decreased movement on U/S. I was hoping to be a little early, as she was due on 12/20/01 and I wanted to have her home for our first Christmas - I never dreamed, however, that she would be here before Halloween.

All of the doctors were so worried she wasn't moving much on U/S; but I could see her heart beating and just knew everything would be fine. But everything was not fine. Immediately after she was born they took her to the NICU and she never came home.

After 7 weeks of testing and no diagnosis, we had to make the difficult decision to let our little girl go. Yes, we made the decision to let her go and it was a terrible decision to have to make. We could have let the doctors put in a tracheostomy and feeding tube, as she could not swallow, suck, or eat. She was deaf and her muscles showed continued degeneration. She also could not focus her beautiful blue eyes. We decided we could not bear to see her in a body that was so incomplete.

Every day, nearly every minute, I think of her. I know that she must be in a better place; but that comforts me very little right now. I know that dying was the only way she could be whole again, but I wonder why God couldn't let her be whole here on earth. And I wonder if I will keep asking this same question every day until I die.

We love you, Isabel. Mom and Dad

Isabel Christine McLaine
Died soon after birth
Powell, OH


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Immanuel David

In April '01 I found out that I was pregnant with my third child. My husband and I were overjoyed. After all, we have a four year old son, Isaiah.

Unfortunately, at five months check up the doctor informed us that our son had an abnormality called RENAL AGENESIS (no kidneys). We were advised to terminate. However, due to our religious upbringing and the fact that the baby appeared to be growing fine, we could not allow the medical profession to "kill" what we believed to be a miracle child.

Nevertheless, I went the whole nine yards hoping and praying that the doctors were wrong, and if by chance they (the doctors) were right, the preganancy would not last the full nine months. Unfortunately, I went three days past my due date and went through natural labor (no epidural). Our son died less that one hour after he was born. We named him Immanuel David.

In the few days/week since Immanuel died have loss faith in anything. I feel as though God has turned his back on my family. After all our first son Michael died at the age of 7-1/2 weeks old. Believe it or not, the doctors considered him to be "healthy as a horse" with no indication of a birth defect. However, at the after being home with us for 3-1/2 weeks he was diagnosed as having a rare/severe heart defect that required immediate surgery. He died two weeks following what was considered to be a successful surgery.

I have also had a total of three miscarriages. Various medical test have given no reason for the miscarriages or infant deaths. After all, I received prenatal care for all babies as soon as I thought I was pregnant. I do not use drugs (never have), smoke or drink alchohol. Go figure!

As you can see my husband and i have been to hell and back.

As of this date, i feel ashamed, unworthy, and any other adjective you may choose to use to describe or relate to plain MISERABLE. I haven't had thoughts of suicide, however; if not for my husband and four year old, I would run away and never return to this place.

I would like to have another child; however, I have recently turned 37 years old and don't feel like there is enough time left to have a healthy child. If there is anyone out there who can relate, please do not hesitate to write. I am desparate to hear from someone who understands!!!

Sincerely, Diannia
Immanuel David Butler
Died soon after birth/RENAL AGENESIS (no kidneys)
Decatur, GA


Marcia's Comments: I see that you live here in the Atlanta area, if you haven't already call us, and we will send you a "Parent's Packet." It is filled with information about our local groups and includes a helpful booklist and information about grief. You also will receive a years subscription to our newsletter at no charge. We just had our "Angel of Hope" dedication on October 21. The newsletter and our site is filled with information about that. You may wish to have a memorial or keepsake brick in memory of your baby.

You have experienced a lot of loss and I think your feelings are very normal. Feeling worthless, ashamed, confused, and mad at God are the very topics we discuss in our groups. What so many people seem to do at will, we struggle with and question "why." I hope this site, our materials, and, maybe our group, can help you work through this pain. By being here, you have started to give yourself permission to look at this...permission to grieve. That is very important and can be the beginning of healing. You might wish to read Fred's comments (see his entry several entries below yours on the Latest E-Mail Entries page), he has similar issues. He also has entries on our forum page. It might help to share with him.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Last Angel, Kamerron

I found out I was pregnant at the end of Sept 2001. I went to the doctor right away, since I've had 2 previous miscarriages and a premature baby. I started spotting even before my 1st check up. I held by breath while they did the ultrasound to see if there was a heartbeat. I was so happy when they did.

At 12 weeks they did another ultrasound. I was spotting again and was told I had a low lying placenta. I was put on restrictions. I couldn't reallly do anything but eat, sleep and use the bathroom.

I got through Nov and Dec spotting every other week, but after the new year the spotting turned into bleeding. I was diagnosed with placenta previa.

I was hospitalized 4 times in Jan of 2002. Each time I was admitted I came back bleeding more and more. After the 4th admittance my doctors turned me over to the high risk pregancy team at the hospital. That way they could moniter me 24hrs a day and keep me at the hospital.

The idea of being on bedrest sounded like forever only being 23 wks. They wanted me to try to get to 37 wks. I was willing to do what i had to do as long as my baby was going to be ok.

After I was turned over to the high risk team they started doing their own tests. I was given a ultrasound, and it was then found that my placenta had moved and I was dialated 3cm and they could feel my sons feet.

I was brought back to labor & delivery to be watched. Later that night at 10:45 pm my water broke. I was 24 wks 4 days. I was rushed to have a emergency c-section. My son was delivered at 11:24 pm on Jan 24th 2002. He weighed 1lb 5oz and was 12.5 in.

I ended up having a hysterectomy as they could not detach my placenta, every time they did it would fall apart and I was bleeding uncontrollably.

My son was doing very well until about 6am the following morning. The nicu doctor came to us and told us he was not doing well and we better come and see him now. I had just barely woke up from my surgery and was really groggy, but I told them I wanted to see him.

They took me in bed and all. We were told he had a severe blood infection and his blood pressure was dropping and they were not getting any response from any treatment they were doing. We decided to take him off the respirator and let him go. He died at 7:10am on Jan 25th 2002.

I asked god if he was going to perform a miracle - I needed it now, but none came.

We took our son back to our room and kept him with us for awhile.

I feel very bitter sometimes. It was hard staying at the hospital for 5 more days after my son was born. The hospital staff was very supportive and offered their sympathy. It was hard to see the other mothers with ribbons on their doors and I had a sign with a teardrop on it.

What I felt was unfair was the mother who had a baby who was on drugs, and the other one who was a prisoner. I feel like I have been so cheated, but I know it is not for me to question. I often wonder why something like this would happen. Why would the lord let a baby suffer in this world and why he would take one away from a family who would provide him with so much love. But again I know it's not for me to know.

I do know this though, it's hurts so bad somedays. I feel like I'm lost and I don't know what to do. I'm trying to recover from my surgery. All the places I hurt remind me of him and being pregnant.

I have good days and bad days. One of the worst was the day I went home from the hospital. I got to take my son's belongings home in a box, everyone else had babies in carseats with ballons and flowers of congradulations.

Right after I came home I spent the week planning his funeral, he was buried Feb 2nd 2002.

Now I'm at home and I can't do to much for the next 6 to 8 weeks. One of the hardest things I've had to do was return all of the baby items we had bought him. We had not bought him alot, but I dread it when they ask you why you want to return the items and you try not to cry.

I hate going out because I can't look at another baby or pregnant woman, and i won't go near the baby dept. But there are some things I had gotten for him I couldn't return and everytime I look at them I cry.

I do plan on making a memory book for him. We went to his grave today and we put in some edging and covered it with marble stones.

I'm glad we got to take pictures of him and we got to hold him, he was also baptized before he died.

But everytime I close my eyes I see him and I dream about him everynight.

I have alot of questions and I have alot of guilt. I wonder where he got the infection and was I the one who gave it to him.

I'm already tired of people telling me it was meant to be and he's in a better place. most people think he died because he was too small or that he was not a real baby. He was doing very well and had a very good chance of survival but the infection he had was lethal.

We still are supposed to meet with the doctors at the hospital to discuss the reason for his death. I dread doing is going to the doctor. I have a appt this Tues so they can check my incision then I will have to go back in 4 to 6 wks to have my postpartium checkup. I don't want to go and see all the pregnant women in the office and see all the baby pictures in the office.

Everyone says that it will take time and things will get better with time. God I hope so. I wouldn't wish this on anyone in the world. Ot is the worst feeling in the world. I lost other people in my life; it hurt. but not like losing my baby. I'm trying to keep my faith in god and not give up.

I will continue to pray for those who have lost a baby. I keep thinking that one day I will be with my son again soon. I'm hoping one day the reason will be revealed to me, and I can have inner peace. Thank you for letting me share my story. Robin speas

Died soon after birth


Marcia's comments: You have had two major losses with the loss of your son and the loss of your ability to be pregnant again. We have had several mothers in our group experience this and it does take a lot of careful "work" and coping to move through all the feelings associated with this tragic experience. It is so confusing to try to make sense out of any of this.

You have done some very special things for your son. I know he knows your love. The memory book is a very good idea. Keeping some of his things will bring tears at times, but they always will have a special kind of love attached to them. I still have little things from my three and I treasure them - years later.

Those doctor's visits are very hard. We talk about them in the group. Sometimes the doctor will put you into a room right away, if you will ask. It is hard to protect yourself when you are hurting, but that is the very time we need to try to do so. I know my doctor took me on a "slow" day and let me go right into the room. It helped me a lot.

You don't have to tell the clerks why you brought it back. Or let someone else take things back. I know this is another tough topic. They don't need much. If you say, "can't use it" they don't need to know why.

Guilt is part of grief. It is our way of trying to figure out "how" we could have changed the ending. You did not cause your baby's death. Unfortunately, infections happen. I know as mothers we wish to protect our babies. I believe we do the best we can. YOu gave Kamerron much love. Now you need to try to love yourself again and work toward forgiving yourself for any preceived thing you might think was your wasn't.

Yes, it takes time, work and giving yourself "permission to heal."

Entry #2 - 2/12/02

Thank you, Marcia for letting me put my story on you web site. I will take your advice and will certainly respond to the other parents. The other things you have sugessted are a good idea. I find it hard to talk with other people around me as I feel they are thinking " i should get over it , and get on with my life".

I have good days and bad days, for every good day it seems like there a 3 bad ones. II helps to know there are other people like you and others that I can share with. The only problem is trying to type through all the tears.

The one thing I did realize today was the fact I didn't think I would miss someone. So much, I've never missed someone in my life. Again thank you for letting me share on your website.

Marcia's Comments: I sure know about the good and bad first the bad out number the good by a long shot. Gradually this changes. You know you are beginning to heal when you start to have a "bad" day and you can change the course of the day-at some point during the day.

I know we miss our babies more than anyone. I have lost my dad and I miss him very much, but I never dreamed I was going to have to grieve my babies. I found by doing something in their memory, I filled up that hurting place. I only could do that, though, as I healed.

ps. If you visit on the forum, we could talk and maybe encourage some others to join us.

Entry #3

The Tiny "Rosebud" God Picked to Bloom in Heaven for Kamerron sent in by Robin (2/25/02)

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Everyone always thought I was gonna be the last to ever have a child. But, finally at age 24 I met and fell in love with my sole mate. Soon after we got our home, I was pregnant. and, the happiest person in the world. I have never looked sooooo forward to something in my life.

At less than 4 months along we found out it was a boy. But, we had already choosen a girl's name. My due date was December 12th 2001. Here it is mid November and we still can't agree on a name. Finally one night my father-n-aw said as a joke. Hw 'bout Baker, since he's baking in there. We looked at each other and said that's it. So his name was now finally choosen.

November 25th 2001, at two weeks early, Baker Channing Muhaw was born at 8:41pm. He was not breathing. The cord was around his neck. and, he had been in the birth canel too long. I kept saying what's wrong. I don't hear him. They said they had to take him to the icu unit right away.

Before they left with him I heard a small cry. At least I knew he was alive. Two hours later they brought him back to me. He was so perfect and soooo beauitful. All 10 fingers and all 10 toes. All I could was thank god that he was okay.

He was so perfect. He never cried, but he would get that look when he was dirty or hungry, and, sometimes let out a small peep. From what I could see he was an angel.

God, let me have 39 wonderful days with my son.

On January 2nd 2002 my son and I were in a 3 car accident. He died the next day at the hospital. We donated his organs and saved two other children.

What made it worse, was that I was injured in the accident also. I was out of comission and totally drugged up for 7 weeks. It was like waking up and having to face that all of this has happened, and that it's not a bad dream.

My son was and always will be my world. But, I finally had to realize that just because my son was dead, it didn't mean that the sun was gonna stop rising. Life went on around me, whether I did or not. So try to smile when you think of your sweet baby. and truge forward! it's hard but we don't have a choice.

Mommy & daddy love and miss you sooooo much Boo Bear. We will see you again one day when we meet our lord in heaven. Until then mommy & daddy (jill & kevin) have a guardian angel.



~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Little Miracle

When the fertility specialists told us that we would not be able to conceive, my husband and I were devastated. (We have a 7 year old son, who was born after 2 years of high doses of clomid and HCG shots.) We had wanted another child so badly.

I quit taking the fertility treatments, and decided to let my body rest awhile. Maybe we would adopt. Then, 2 months later, I felt as though something was different. I took a pregnancy test and was so elated--it was positive.

I called my doctor and went in for an appointment. He did some bloodwork and told me my progesterone levels were low, and I would need to take some meds to raise it. He warned of a miscarriage. I took doses of progesterone that had to be increased weekly, but Camden hung on.

I then began to feel lightheaded and dizzy and would break out into sweats. An early glucose test at 10 weeks, showed I was diabetic. After 3 weeks of unsuccessfully trying to control it with diet, my ob referred me to a perinatologist who specialized in gestational diabetes. I began insulin shots, which had to be increased almost weekly throughout my entire pregnancy. Still, Camden was hanging in there.

Next, I had an amnio done and it came back normal. (The specialist warned of possible spinabifida.) With a perfect amnio,we thought we were home free.

Then, an ultrasound at 5 months showed some heart problems. We were told the heart was having difficulties--probably due to the high suagr levels in my body. Camden was diagnosed with left ventricular hypertrophy with depressed left ventricular function, mitral valve hypoplasia and a reverse flow of blood from the atriums. We were in shock.

We consulted with an excellent pediatric cardiologist who said things might improve once Camden was out on his own and away from my high sugars. And we were told he might have to have several surgeries, but that he had a good chance of being ok.

After 2 1/2 weeks of bed rest in the hospital, (Cam also had absent end blood flow from the umbilical cord) I was allowed to go home on bed rest. I went to the doctor every other day, and my second week home, Camden scored poorly on the biophysical profile. They sent me to the hospital at once, for an emergency c-section. We still felt that things would be ok.

Camden was born on April 18, 2002. His due date was late May, but he was over 5 pounds and perfect--except his heart. He was so beautiful! He was immediately cared for by a team of wonderful doctors and specialists.

It was found that what was causing all of his heart problems, was not my gestational diabetes, but his aortic valve had dissolved somehow. The doctors had never before seen this. It was there in previous ultrasounds, but now only a few remnants remained.

He was lifeflighted to a nearby children's hospital, famous for its heart center, and a team of doctors met with my husband. My husband said he will always remember the doctors telling him that there was nothing they could do to save Cam. They had conulted with databases and other doctors around the US, but no one had seen this condition before.

My husband called me in my hospital room and told me they would bring Camden back to my hospital in the ambulance, so he could die in my arms.

My husband, son and I held Camden and loved on him for a couple of hours, and I will treasure those moments forever. I held him as the breathing tube was removed and he took his last breath. I then held him through the night, singing to him, and crying for God to embrace him with love.

It was a devastating experience--We are trying to cope with things, but it is so hard. When Camden died, so did a part of our hearts. My husband, son and I had so many hopes and dreams for Cam and now they are gone.

We have so many wonderful friends and family members who have really supported us with tons of love, but the pain is so deep. We plan to start attending a support group soon. If you have any suggestions on how to survive the pain, please let me know. Thanks.

Died soon after birth/heart issues


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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The story of Avery

I've been familiar with SHARE Atlanta for many years. I was once a social worker for a local NICU and made many referrals to SHARE for parents who had lost a baby. I was the grief counselor for when such a tragic event occurred.

Now, it has happened to me. When I was a social worker, I had no children of my own. So although I truly empathized with what these moms and dads must be going through, I never truly understood- until now.

After 2 years of trying to get pregnant, my husband and I were so excited to learn that it had finally happened in July of 2001. Of course I was nervous most of the pregnancy because I knew all too well how fragile pregnancy, birth, and life can be from my previous experiences. However, the doctor's were always reassuring saying I was right on course and having a perfectly normal pregnancy. This was my first pregnancy so I never really knew what was normal or not.

At 20 weeks, we found out we were having a girl. We were so excited because this is what we had secretly hoped for. I later had the AFP test which was also normal. By 30 weeks, many of my fears had subsided because my NICU experience had taught me that babies have such a great chance of surviving premature birth even after 25 weeks gestation. I still did have concerns and often voiced them to the doctor, but I was always reassured that everything was fine.

My main concern was that I felt she did not move as much as what other pregnant moms described. I also seemed to stop gaining weight around 32 weeks, a time I thought I should be getting bigger, but the doctors said not to worry.

So we continued with our excitement of having a new baby in just a few weeks. I had just had my second baby shower and the nursery was almost complete when everything changed.

Two days before my 36th week of gestation, I went into labor and went to the hospital. The doctor said everything seemed fine and that she was ready to be born. The NICU team had been called in as a precautionary measure since she was slightly preterm- this did not worry me.

When she was born, I heard her cry briefly and she was then wisked off to the warmer where the NICU staff began their work. At first I thought "she just needs a little oxygen, then she'll be ok". However, it soon became clear this was not the case.

After closer examination, it was discovered that I had low amniotic fluid which caused her lungs to be underdeveloped and caused mild contractures in her feet and hands due to being cramped inside of me.

My husband and I visited her in the NICU before I was taken to my own room. She was beautiful!! She looked perfect on the outside! She weighed 5lbs. and 14 oz and was born on February 23rd, 2002.

She was on the ventilator but I was sure that was just a temporary thing until her lungs became stronger. However, by the next day it became clear that things were much more serious than anyone expected. It seemed that her kidneys were not working and probably had not been for some time, hence the low amniotic fluid (which was not detected prior to birth).

After being told there was nothing more they could do for her, we chose to have her transferred to Egelston in hopes they might have some answers for us. By this time, she was on maximum ventilator settings and required a chest tube after one of her lungs collapsed.

She stayed at Egelston for 4 days as they tried everything to get her kidneys to work and to help build her lungs. Each minute, my husband and I prayed for her to just put out some urine, because then everything would be ok. But it soon became apparent that all of their efforts were not making a difference. She was getting worse instead of better. After many consultations with the neonatologist, we agreed to take her off of the ventilator and allow her to die as we held her.

She died on February 28th, 2002. This was the first time I was even able to hold my baby. My precious, beautiful Avery.

It is now 3 months later and though I've managed to go back to work (I am now a teacher) and resume my normal routine, my heart is utterly broken. The first couple of months I was still in shock. I really don't even know how we functioned during that time. You really do go on automatic pilot when such a tragedy occurs. Now that the shock has worn off, the pain seems to have only increased. I know all about the stages of grief and have experienced most of them- shock, denial, anger, sadness/depression.

Acceptance is the one I'm not quite ready for. I so desperately want the chance to hold and kiss her again. I hate that she had to endure so many harsh medical interventions rather than feel the comfort of my husband's and my love.

We received the autopsy report which indicated Avery had a form of Potter Syndrome. She had both kidneys but at some point they seemed to have sustained damage (probably around 28-30 weeks gestation). She appeared to have sustained some brain damage around the same time. The neonatologists speculate that there was some type of blood clot that caused this- it was just a "freak" accident that couldn't be linked to any specific cause. All I know is that it was my worst nightmare come true. And what makes it harder is that there are no guarantees something wouldn't happen again in future pregnancies. I do feel that some of my fears should have been listened to closer during my pregnancy and that certainly it should have been identified that I had low amniotic fluid before Avery was born. But I also know this would not have made a difference in the outcome.

I have waited until now to request more info about support through SHARE. Part of me says I know enough about grief counseling to get through this. I also have a loving, wonderful husband who is grieving right along with me and is the reason I am at least functioning somewhat normally today. Family, friends, and co-workers have also been wonderful and willing to help in any way, but no one truly knows how to help unless they've experienced such a loss. I know that now in a way I never wanted to know it.

Losing Avery has been the deepest loss I have ever felt. All of my hopes and dreams feel trampled upon and it often feels things will never be good again, but I know time will heal. I just wish time would hurry up!! I struggle to get through each day and am then thankful when it's over because I'm at least one day closer to the future, when things are supposed to be better.

Thank you for allowing me to share my story. It truly does help to write your feelings. I am keeping a journal for this purpose as well. Please feel free to send me any helpful advice or wisdom. Sincerely, Janna

"My concern about coming to a local group...." by Janna (7/1/02)

"One year later... The story of Avery Nava" by Janna (2/21/03)

"Janna and Aaron Seskin announce the arrival of their healthy baby boy, Rowan Micah ~ Born June 20th, 2003 (GA)

Avery Nava Seskin
Died soon after birth/a form of Potter's Syndrome
Atlanta, Georgia


Marcia's comments: Your thoughts come when many parents do seek support—at the six month point. As I discuss under “Allowing Grieving to Happen to Heal,” and as you have expressed, denial, shock and the initial pain have been moved through (as if on auto pilot) and the full reality of what has happen hits. Also, the need to experience all of what you can about Avery is very real. You can’t let go of much of the pain until you have Avery in a “safe” place in your heart and soul. This happens gradually and is a normal need.

By six months, even the most supportive people are often ready for you to be “healed” because to them—you are functioning. They see you do everyday things, but they don’t understand the incredible effort that goes into each day. It is the reality of the grief process. That is why we talk about the stages of grief as emotions, but the grieving process is a difficult WALK. You are trying to understand “what is” in your world now and figure out “what will be” and how to get there. All of this involves adapting and changing and a level of fear and uncertainty. Grief causes change because we have to modify what we do to survive and make new decisions to heal.

In our groups we discuss that active grieving with various coping skills is important. (Keeping a journal is also helpful because it allows you to see where you have walked as you begin to heal.) Grieving in itself isn’t the answer. I also have seen some of the strongest and most maternal moms come to our group. They are usually the ones who help everyone else, but in the loss of their baby they realize that they need support. I believe it takes courage to grieve.

Of course, I think coming to a group can be a wise decision. (I had never really been part of a group such as SHARE.) But there is so much to work through and sitting with others who have been there who nod in agreement as you share is comforting. You know that they totally understand where you are coming from. Also, you meet moms/parents who have survived so you totally begin to realize that survival is possible.

Yes, it takes time, but time with efforts toward HEALING is what is important. I have had numerous grief counselors in our group who have declared the same as you—our life experiences are our true guidelines. I am sorry that this has to be for you. You have had good support and I am glad, but that doesn’t exclude the possible additional support that our group might offer.

We will send you a "Parent's Packet." It is filled with information about our local groups, several brochures, and includes a helpful booklist and information about grief. You also will receive a years subscription to our newsletter at no charge. We had our "Angel of Hope" dedication on October 21, and our Angel garden with memorial brick pathway is a comfort to many. Our site is filled with information about that. You may wish to have a memorial or keepsake brick in memory of Avery. You can either send me your address and telephone number or you can call our number and leave this information. I would be glad to have a packet sent to you. There is no obligation tied to receiving one.

Thank you, too, for telling other parents about us in the past. Having the hospital nurse share about our group means a lot to most parents. They come to our group with positive thoughts about the hospital support team. Dealing with the array of confusing feelings that they are experiencing is hard enough - hunting for support would seem impossible.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Tiger's Tale

Hi my name is Buffie McElwee and I recently lost my 11 week old baby boy. This is our story.

My husband and I have 2 girls and we tried again for a son. My husband really wanted a boy. Before all of this I have lost 2 other children around 12 weeks. One before each of my 2 daughters and we never was told the sex of those baby angels but we always will think they were boys. When I got pregnant again we were all tickeled pink.

But at 12 weeks I started bleeding and had to go to the hospital. We were so upset and thinking we were gonna lose another child, but as it turned out the baby was fine and the bleeding stopped.

A few weeks passed by and so I thought I was out of the 1st trimester and everything was gonna be fine. At 17 weeks we had a ultrasound and found out we were having a boy.I was so happy and my husband was estatic.

Then at 19 weeks I woke up in the middle of the night soaking wet so we went to the hospital and found out I had lost the amnioc fluid around the baby. In other words my water had broke.

I was sent home and told to go to the doctor the next day. The doctors I saw was in Rome, the next town over from where I live. They didn't know what to tell me so they called the peri at Northside. I was told my baby had a 10% chance of making it to be viable at 26 weeks. And that most women who lose their fluids have their baby from 24 hours to 2 weeks.

Well I went home and got in bed only getting up to go to the bathroom.I was lucky enough to have my mother come and take care of my 1 and 8 year old while my husband was at work everyday. I was in the hospital 2 different times for a week both times because I started bleeding. I bled the whole last month of my pregnacy.

When I was 29 weeks I went into labor and had to be put to sleep and have an emergancy C-section. Tiger Wayne McElwee came out at 11:03 a.m. on may 17th. He was bornwith hypoplatic lung. The doctors told me if he had any chance he would need to be sent directly to Grady Memorial. They said that it would be a miracle if he even made it. The best thing was to let him go.

But we couldn't not give him a chance. He made it to Grady which is 2 hours from our home and was put on an osculator for 9 days. Then put on a regular vent. He was doing great! The doctors were saying he may come home by his due date which was 7/30.

Then he got sick because a vessel between his heart and lung was open that should have closed at birth. They almost lost him then put put him on nitric oxide which is experimental to keep hs oxygen level up.

He had surgery to close his duct and started to improve greatly. Once again we were on track and it didn't take long till the doctors thought he wa ready to be off the vent and on a C-pap machine where he could do all the breathing for his self. They wanted to get him off the vent befor he was a month old because being on a vent over 28 days starts hurting your lungs and making small tears in them. It causes chronic lung damage also called BPD. Lots of babys live who have BPD.

Tiger was not ready to be taken off the vent. He struggled so very hard until they finally took himoff after 3 days. I feel those 3 days did the most damage. He collaped a lung and had to be put back on the vent at it's highest setting, paralized and put on a morphine drip.

They wanted us to let him go, but we said no. He never really improved but only a little bit. He got very alert and would smile. He had no brain damage and all the nurses got attached to him.

But on August 2nd 2002 his heart stopped beating and after working on him an hour and giving him meds to make his heart beat they got him back but his oxygen level wouldn't go any farther than 50%. They told us his lung damage was so great after being on the vent for 11 weeks he would never come off the machine.

They could have put hiom back on the osculator, paralized hm and all that again, but it was only prolonging the inevitable.

So we let him go to heaven. They pulled out the tube and we held him as he took his last breaths. We had rather let him pass with us than someone beathing on his chest in the middle of the night.

He was so beautiful and loved by so many. We buried him this past Sunday and I know he is in heaven.

My husband is really taking this hard. I do okay except at night when I try to go to sleep and then I guess bcause there is no on around to occupy my thoughts I miss him so bad I can't stand it. I guess that is why it is 2:30 in the morning and I am sending in our story but anyways thanks for listening. If anyone else reads this and needs to talk because we are all in the same boat email me. Thanks.

Buffie Tiger Wayne McElwee 5/17 to 8/2 Other Cedartown, Ga 8/9/02


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Justin Ryan Wogerman

When me and my husband learned we were going to have another child, we were so excited. We already have a 4 yr old and a 16 mon. old.

Everything was going so good during the pregnancy until we went to our regular 5 mth. check up. The doctor informed us that the baby had hardly any amniotic fluid around it. I was put on bedrest and sent to a perinatologist in 1 week from that appointment.

The specialist there told us that everything was not ok and that we needed to expect the worst. He made an appointment for me for another month from there, where he would hopefully see an improvement in my condition. I remained on bedrest and another week went by with nothing changing.

I was now exactly 23 weeks along. I awoke that morning and started to get up when my water broke. I was taken to the hospital where it was comfirmed that my water had indeed broken. We decided to be transfered to another hospital where a specialist could handle things.

I was admitted and told that hopefully I would remain pregnant until at least after 24 weeks where then my baby might have a chance to survive. A couple days went by and I was doing ok. I had routine blood work done when they discovered I had an infection in my uterus from my membranes rupturing.

My husband and I were told they would have to induce labor because now my life was in jeapordy if the infection were to get worse. They began inducing labor and after 31 hours and being 23 weeks an 4 days along our baby son was born.

He weighed 1 lb. 10 oz. and was 12 1/2 inches long. He had a slow heartbeat and was not breathing on his own so they took him and tubed him to get him breathing. He was still not responding like they wanted to the air tube.

The neonatal doctor came in and told us that it would be best if they took the tube out and brought him to us and let him pass in peace. We were speechless. How do you make a decision like that only in a short amount of time. The only thing we had decided is that we didnt ! want our precious son to suffer anymore.

We went along with what the doctor wanted and our little Justin was brought to us. He was so tiny and so helpless. We held him and prayed that some how a miracle could happen. Justin's heart stopped after being alive only 3 hours and 38 minutes. They said that there was nothing they could do because his lungs just weren't developed enough.

They released me from the hospital that very day, and we were sent home without our little Justin. We now had to make arrangements for a funeral. Two days after bringing our precious son into this world we had to say goodbye forever.

How can a person be given such a beautiful gift and then have it taken away? We are hoping by this that maybe someone has answers or support to help us through this. Thank You for taking the time to read about our little angel Justin Ryan Wogerman. Sincerely, Lisa

Justin Ryan Wogerman
October 7, 2002
Died soon after birth
Dayton, Ohio


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our angel in heaven: Dylan Chevy Cormier

We have 2 teenage boys .I had them both by the age of 22. In 2000 my husband and I, both deeply in love decided we would like to have one more child. I was 34 @ that time. In 2002 I finally became pregnant.

My husband knew before me somehow 2 weeks before I was due with the monthly thing. I was amazed that he was right. In the begining of my first term I felt that something wasn't right. I was exceptionally over tired, everyone said I was older and more busy with work, but I knew that wasn't it.

I received the first picture of my ultrasound, and I knew that something was wrong. The belly in the picture looked too large. The doctors afterwards were amazed how I was acually right and knew before they did. Moms six sense I guess.

Then one day at work I received a call from the dr. to come in immediatly. He said the baby had ascites, which is extra fluid in the belly and a sign of that was real bad.

We live in Moncton, N.B. He sent us to Saint John to see a specialist with advanced machines to read ultrasounds better. He found that the baby had something wrong with the heart,but wasn't sure if the ascites was connected.

I had genetic testing at this time also. He called Halifax, N.S and sent us there right away. We were basket cases.

When we arrived there I had another ultrasound with a heart Dr. He said he thought that it was tetrology of fallot. The baby would need an operation. The sucess rate was 95% sucess. They could'nt say for sure why the ascites was there, so they said and by this time I was 23 weeks that maybe we should consider terminating.

I thought it was a nightmare. This was on Friday and we had till Monday to decide.

We were devastated. How could we possibly make a decision with a baby we had already fallen in love with. We cried for 48hrs.

We took the 3 hr drive back on Monday. The Dr. took one look at us and said "do you want another ultrasound." My husband was so hopefull all along and prayed the dr would ask .He gave another amnio then and looked at the ultrasound again and said that it was weird but the fluid in his belly was less then on Friday and maybe this was a good sign and terminating wasn't a choice that he had recommended on Friday. I think he knew by looking at us that we couldn't do it.

We just wanted our baby no matter what was in store for us, whether it was Down Syndrome or other complications with having to go back and forth to hospitals. It was our baby boy, Dylan, who we refered to since I was 4 months.

With technology and doing a heart operation, we thought everything was turning in our favor. The heart Dr. called to let us know that everything would be fine and to go ahead and have a baby shower. I was so excited.

I had a beautiful shower with about 60 people who came. We tore half of our house apart. We took apart 2 rooms, a hall and a closet and made it into one beautiful room for us and Dylan. After all I went through he was staying with us, where we could see and admire him. We also made 2 new rooms downstairs in the basement for our other 2 sons. They couldn't wait to see Dylan. It was also hard on them with us going back and forth to Halifax.

I was to deliver in Halifax so I stayed there for 2 weeks waiting to go in labour. Finally the day came exactly on my due date. I couldn't wait to touch, hold or feel him in my arms. I was in labour 12 hrs then something was happening.

I started to hemmorage. I needed an emergency c section. I was horrified and scared. They reassured me that everything would be fine. I had gotten to know many of the staff before hand and had made many friends who knew how excited we were. They were also waiting to see the baby. Some worked in the special care unit, some in delivery and a couple in the operation room. I too am a LPN nurse. So meeting them before hand and their being the ones with me in the labour room and operating room was really good because we were already connected with each other.

In the operating room there was suddenly alot of commotion going on. Emergency this, ode that. I didn't know what was happening, but it wasn't good. I kept trying to read all their faces, but I couldn't with their masks on.

The cry of Dylan wasn't to be heard and remembered how Ii couldn't wait for that wonderful cry.

Then the dr. said "Lisa I'm sorry but Dylan isn't going to make it. They were working on him for 45 minutes so they told me, I didn't realise it was that long because I just kept waiting for that special cry. It didn't happen.

They tried to put a tube down his throat, but there was nothing to connect it to. He had no larynx. Everyone was shocked including the Dr's. There was nothing that could have been done. Technology couldn't have helped even if they had known before hand. His larynx should have developed @ about 4 weeks of gestation.

No one could ever imagine what it was like. It was the worst that could happen to my life. It will be unforgetable the rest of our lives.

We got to hold him soon after. It was hard to imagine that soon as the cord was cut, that it would be the end of his life. He was so beautiful and perfect in every way.

The next day came, and they asked if we would like to have him in our room and to see him again. We both decided but not sure. You mean we can acually see him again? We had him again,we got to hold, touch and feel him just as I always wanted during my whole pregnancy. Here was our baby Dylan in our arms. He was so cold, I couldn't beleive that his soul had already left and gone to heaven.

We took a lot pictures of him. We had him so long in our room that my husband and I imagined him moving. I will never forget those memories. Those precious hours with him. We will never regret having him the day after.

We have those pictures now, one in our bedroom with a ornament of an angel holding a baby boy in her arms. My extradinary husband bought this for me @ Christmas time. It was a very hard time. Dylan would have been 3 months Christmas Eve. He also bought me a family ring including Dylans birthstone.

I cannot decribe how much I love my husband. He is my angel on earth and he is with me everyday.

It has been 5 months now and is not at all any easier today then yesterday. I play with his pictures on the computer, doing different things to them. Somehow it helps with healing and never forgetting how beautiful he was.

Some friends avoid because they don't know what to say. There is nothing that could be said that would make us feel better, but to be there and listen.

I hope some parents read this and are thankful that they have a gift from god.

I've become very sensitive about kids since my great loss. If a see a mother scolding her children at a mall or wherever for silly little things, it takes all i have not to go over and say something. Life is so short, they can be with you today and gone tomorrow no matter at what age. My sons are so precious. As teenagers, they were so good to me during my pregnancy. I will always remember. Hopefully in the future we will again experience the anticipation of a baby.


Dylan Chevy Cormier
Died soon after birth
Halifax,N.B. I.W.K Canada


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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"Forever my son"- a preterm loss

Vincent was our third child, my husband and I are blesssed with two beautiful girls. Pammy is 3 and Julianne is 1. I was still nursing when I found I was pregnant. Our family just moved down south from NY about a year ago and we had finally moved into out new home.

We knew we wanted another child, but we got pregnant alot faster than we thought. The same week I found out I was pregnant, my doctor diagnosed me with an overactive thyroid. A problem I had not faced with my other children. The doctor put me on drug named PTU, which is supposed to okay for pregnant women.

Anyhow our pregnancy was going great, on 1/22/03, we had an ultrasound done and found out that we were going to have a son. We couldn't have been happier. Our lives were almost perfect.

On 2/6/03, I noticed alot of clear discharge that didn't have any odor. I called the doctor, and they had me come in. The said that my water did not break, but I was dialated 1.5 cm. and I was having contractions. They admitted me to the hospital, where I remained for four days. I was sent home with an oral medicine to stop the contractions.

That night, I went to bed and awoke at 5:30 AM with blood. My husband and I went to the hospital, where they said that my water was broken and that I was 4 cm. dialated. There was nothing to be done. I was 22 weeks and the baby was not viable. I was advised to allow them to induce labor to prevent infection and scarring.

The next seven hours were my worst nightmare come true. Seven hours of us crying and waiting to give birth to a baby I wanted more than life and would die in my arms. I never thought I would see one of my children die.

I had the best doctor and amazing nurses throughout this terrible dream. They prepared us for everything and were gentle and caring for our needs. My son was born at 5:23 PM on 2/11/03. He was perfect. He had all his fingers and toes, a perfect nose with an indent under the bone just like his sisters and his daddy, lips that were thin like mine and broad shoulders for such a small child. Vincent was 27cm. long and weighed 15oz. He lived for an hour and half and died in his daddy and my arms.

Prior to his death his daddy told him that whenever he looks at the star of Roanoke he'll think of him. Vincent is now in our home, and I sleep at night with comfort knowing that all my children are here with me.

It's been three weeks since Vincent was born, but Pammy still asks for him. We told her that he died and is in heaven watching us. She talks to him every night and when we're outside she'll look up in the sky and tells her brother that she loves and misses him.

Vincent has forever changed my life and the dynamics of our family. Its amazing how a child so small, who lived for so little time can change you forever.

Vincent, I will always love you. Keep your family safe until we meet again.

Love always,


Vincent Richard Hughes
Second trimester loss
Roanoke, Virginia

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Baby Chase

I had not been feeling well for several weeks. My OBGYN was not concerned at my 22 week check up - said everyting sounded and looked normal with the baby. We found out that we were going to have a boy at 17 weeks due to an amniocentesis done because my AFP came back with higher marker levels indicating the possibility of Down's Syndrome. As it turned out, the baby was fine - no Down's and it was a boy. We were so excited because we have a beautiful three year old daughter, Michaela, and our son would make our family complete. His due date was August 13, 2003.

On May 4, 2003, I woke up with some cramping and spotting. I called my OBGYN and he said he was not that concerned, but to go to the hospital anyway and get checked. I had been concerned all during my pregnancy with Chase about pre-term labor because our daughter was born at 33 weeks. So, needless to say, when this Sunday morning began, I was already apprehensive - almost in a weird deja vu.

We arrived at the hospital after taking our daughter to my parents. I was immediately hooked up to monitors and it was determined that I was, in fact, in labor - at 25 weeks. My doctor ordered the shots to stop the contractions but it did not work. I was then put on magensium sulfate. This did slow the contractions quite a bit.

My OBGYN came to check on me - he did a quick ultra sound to check on the baby and discovered that I was dialated to 1cm. His words were, "We have to keep you pregnant". I asked him on a scale of 1-10 how concerned he was and he said "about 2-3". He ordered a detailed ultra sound for the next morning to evaluate the placenta, etc. I remained hooked up to everything and the contractions slowly began to stop as we heard Chase's steady heartbeat through the equipment.

Bright and early the next morning, I was wisked away to the Nuclear Medicine department for an ultra sound. I was kind of "out of it" I think because of the mag sulfate, but I remember saying something to the tech about the doctor being concerned about the placenta and abruption. She pointed to the placenta and said it does not look like there has been an abruption. She was very kind.

I was taken back to my room and about 30 minutes later, my doctor appeared and said to me: "Yesterday I was about a 2-3, now I am at a 10 - ". He then began explaining to my husband and I that Chase had hydrops and was extremely swollen - that he had to be delivered because he was dying inside me. I asked how long he had and was told several hours to several days. My doctor told me that at 25 weeks, he would not survive a vaginal birth. His only hope was a C-Section - he also reminded me that 25 "weekers" born prematurely generally do not survive, especially ones that are born with severe problems.

I told him that I wanted to give Chase every chance, so I wanted to have the C-Section. Shortly after my doctor left, we were visited by a neonatologist (as it turns out, this doctor actually worked with our daughter, so we knew her). She explained the facts about hydrops and the complications to us and then explained the out look for a baby born at 25 weeks with this problem! . We knew that our son would not survive.

Approximately an hour and a half later, our son, Hayden Chase Ingram, was taken from my body. He was taken immediatly to the NICU staff. As they were sewing my body back together, my husband was asked to come to where Chase was. As he told me later, the neonatologist explained to him how sick the baby was and that my AFP test was positive because of the hydrops.

I was taken back to my room and was on morphine...that is part of the most difficult thing for me - not remembering things I believe would help me now to put everything in order. I remember waking up and being told that Chase was very sick and was not going to live. I requested that a priest baptize him immediately. My husband, not being Catholic, took my parents and was there when our son was baptized.

Some time during the afternoon, I was moved to a private room, but first, I was taken to the NICU to see my son. The nurse with him held up a mirror so I could see his face.

Chase lived for seven hours. My husband came to me and asked me if I wanted to hold him - and I said I did. This was a trememdously difficult thing to do and one of the few memories I will treasure always - his face and hands, and how much he looked like his sister. We both held him and have absolutely no regrets.

My OBGYN was determined to find out what caused the hydrops. My husband and I consented to an autopsy. We learned that a tumor had developed in the placenta and was circumventing the baby's oxygen supply and nutrition back to him, bypassing the switch off point between him and I. When this was explained, we were relieved to know it was not something my husband or I caused and was not genetic. We were told that it was a product of the baby and the problem happend at conception - there was nothing that could have been done to prevent it from happening. I asked the doctor if Chase has suffered and he said, no, that he had been oxygen deprived and did not suffer. My doctor also said that this is extremely rare and the chance of it happening again would be like getting struck by lightening twice.

We buried Chase on May 10, 2003.

It has been six weeks since this happened and each day we get a little stronger. I think it is different for me (not worse, just different) than for my husband because I am the one that carried the baby and felt the movement and kicks. We explained to Michaela the day after he died that Baby Chase was in heaven. We told her that Chase got sick in mommy's tummy and had to be taken out. She asked questions for about three weeks and kept saying "when baby Chase gets better, he will come home and live with us". This, of course, was pure agony to explain, but I think she now understands that Chase is gone.

I am so grateful to my parents, family and friends for all the support. I know that one day we will be with Chase again. It brings a kind of peace to know that he is looking out for us. We are thankful to God that he took Chase when he did - before he was 28 or 29 weeks gestational age; he may have been able to survive, but his quality of life would have been non-existant. Thinking about that does help some, but on the flip side, I still know that my baby is in the ground and not with me physically.

Whether or not my husband and I have another child, we had a son. His sister will be raised to know about him. When she gets older, we will explain more to her and take her to visit him.

We love you Baby Chase and know that you are in a much better place. We miss you and the things that we will never be able to experience with you or to see you grow into a man. Please know that you have always been loved and always will be.


Mommy, Daddy and Michaela

Hayden Chase Ingram
Died soon after birth 25 weeks/hydrops
Tulsa, Oklahoma
June 19, 2003


Marcia's Comments: Please read the information found in the Drop Down Box about "Sibling Grief." This section might help you cope with your daughter's questions. My son was 5 when Seth died. I used a baby doll for him to love on and to rock. We cried together some, too. He would tell me that he was sad. He would tell me that we could have another baby. I never promised him one - though we did have another son two years later. The section addresses many issues.

We also have a section on "Preterm Diagnosis" in our Main Drop Down Box . I am going to connect your story to that also. You did many special things for Hayden Chase, and I know other families with similar situations will benefit from reading your story.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Katlin's Story

We found out our sweet Katlin had Hypoplastic Left Heart Syndrome when I was five months pregnant with her, we were given the options of aboration, 3 surgries within 2-3 years, hospice or a heart transplant. We opted for the surgery so we were scheduled a c-section.

She was born 7. 5 lbs and was 21 inches long, she was so perfect and didn't need oxygen like they thought. They even did the surgery early because she was so strong. She made it through the surgery like a champ but that nite she got a blood clot in her heart and we lost her. Our sweet little lamb.

Katlin Marie
Other/Hypoplastic Left Heart Syndrome
Augusta, GA

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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"The loss of my last child"

Well I have no idea where to start. Blake was a beautiful child. Always smiling and laughing. He was 17 months when his dad found him gone in bed with me on Dec 9th 2003 at 10:30pm. I swore up and down i did something. I thought he got sick and drowned on his own spit up or he had a apnea spell and didnt hear him. He was perfectly normal that day. Nothing wrong with him.

When he was born he was 4 weeks early. They had to induce me or I would have had another congestive heart failure. He was born with a aortic stenosis and lungs were not developed. He ended up staying in the hospital for 24 days then got to come home to us.

He ended up haveing a malrotation surgery done (where the intestants were tangled) in Nov of 02. Then he had a valve replacement done in Jan 16,03. He came home in February of 03. Ever since he has been fine till Dec 03.

I'll tell you one thing, I thought I was the only parent that lost an infant until I found this website. It has helped me out alot on coping.

I feel for other mothers, fathers, and definitely siblings. I thought god was only punishing me for taking my child away from me and only leaving my 3 other children. Well the autopsy came back and they said his heart was 2 or 3 times bigger than a normal babies heart was. So my little "peanut" could not handle it no more. I do thank god for not letting him suffer and letting him go peacefully in his sleep cuddled up next to me his mommy.

I just feel so alone. I feel empty. Yes, I have my other children and husband, but I feel incomplete not whole any more. I don't think i will ever feel better again. Thanks so much for this site.

Sadly miss you Peanut
Love always,
Samantha, Nathan,and Logan
Blake Allen Todd
Other/enlarged heart
London, Ohio


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Jacob Cole Wright ~ 4-07-04/08-03-04

Jacob was born at 9 lbs 6 ozs.

He got his first infection at 3 weeks old and he also had acid reflux. I fought with pediatrician the whole time. Jacob was in the hospital 3 times for acid reflux and the whole time he had problems with his immune system. The doctors did not find that out til he got parainflurza virus then turned into pnemonia. Jacob was on a heart lung bypass for 28 days.

He fought til the end. His dad and I had the machine turned off because we knew it was time and he was tired. He fought for 4 months and 3 of those me and him spent in Atlanta children hospitals.

He was our first after 9 years and thousands of medicines and doctors telling us we would never have kids. We are thankful to have loved and had Jacob for a short time and not to have had him at all.

Christy and David
Jacob Cole Wright
August 24, 2004


Marcia's thoughts: Your story is one of pain, endurance, and love, and I know that your love for Jacob will help you move through the grief that you are dealing with. Jacob was a fighter, wasn't he. So many of us did so much for our children while they were physically with us. We had to chose to let our son die as well, and I don't believe there is a harder decision out there.

Making our baby's presence meaningful in our lives is so important...then we feel as though their presence will always be a meaningful part of our of who we are. It is so hard to survive the death of our child. It sometimes doesn't seem doable, but it is - especially with options given to us. Knowing that others have survived helped me, and I know it sometimes is the glue that holds us together. Then, figuring out what options help at all - as we try different ones out- seems to be the next step. Walking around in a fog is usually true for most of us and the fog only very gradually separates.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Butterfly

After our son Joshua passed in 2003 my husband I decided not to have anymore children. But, in time, that started to change and we wanted a baby, especially a daughter. We decided to look into adoption.

We had already brought our own children into the world, we felt it was time to help some other children out. We found about something called open adoption and very quicky found a birth mother who fell in love with our family.

When the birthmother was almost 8 months pregnant she became very ill and we found out she had pre-eclampsia. The doctors decided to induce labor asap.

Our precious Hanna was born on October 8th 2004 at 4:27pm. She was 4lbs and 8oz. So perfect and precious, in everyway. Everything seemed fine, doctors thought she was healthy. But around 5pm on October 10th we were getting ready to hold Hanna for the first time when she started having seizures.

The doctor's did all they could but our baby girl passed away at 5:18pm. Cause of death.. a hemorrage in the brain.

After Hanna was already gone we held her for a long time, I rocked her until I felt this feeling of she had made it to Heaven. Hanna, I love you forever. You will always be my daughter.

Adalia Sullivan
Hanna Candace Sullivan
Died soon after birth
Oct. 12, 2004

A poem to Friends in Memory of Joshua by Ada (10/12/04)


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Missing You

Our daughter was born 6 weeks early due to my uterus rupturing. My husband was out of town on business and I went thru the emergency c-section with my mother-in-law. She was immediatly wisked away to me the NICU and my mother-in-law went with her. It didn't dawn on my how serious everything was until my husband finally arrived that evening.

Things were looking good for Sarah and they had me all back together but informed us that I could not have any more children. Sarah was a fighter and got to go home from the NICU 2 weeks later with no machines! I thought my little miracle was here and healthy.

We went to all the normal doctor appointments plus some extras due to her early arrival. Every thing looked great and we were well on our way.

We decided to spend Thanksgiving eve at my sister-in-laws and my neices and nephew got to hold Sarah for the first time. The next morning we drove to Charlotte, NC to spend Thanksgiving with my father, grandmother and uncle, this was also their first time to see her.

The next morning I got up and did my traditional shopping. Our then 2 year old son loves hockey and wanted to go to a we packed the kids in the car and went a game. It had to be one of the happiest times of my life. I had my "perfect family".

During the game I was breast feeding Sarah and noticed that she wasn't latched on. I pulled her back and noticed that she was limp. The gentleman behind me said "your baby looks dead" My husband grabbed her and ran to the medic area. The rest seems like a blur, the ambulance ride, being questioned by detectives, the doctors telling us she was dead, calling family and having them drive over from Atlanta.

We sat with her for a couple of hours holding her. The hospital staff was wonderful. They let us stay with her until our family could arrive from Atlanta and see her as well.

After a couple agonizing days wondering what I did or didn't do to my daughter the autopsy report finally came. I was afraid to open it in fear that it would say I did something wrong. I finally mustered the courage to open it and it said that she died of acute myocardial infarction which is normally caused by 1 of 3 options and that they didn't see evidence of any of them. The only thing I found out was my baby's heart stopped and they don't know why.

I miss her terribly. I am a stay at home mom and constantly have reminders of her and how my life is drastically missing one of its parts. My precious Angel Sarah, mommy misses you! 9/24/04 - 11/28/04

Sarah Elizabeth Schildroth
9/24/04 - 11/28/04
Charlotte, N.C.


Marcia's thoughts: There are no words to ease this time for you. It must be so very difficult not to have any known reason for Sarah's death. I know our parents often find some level of comfort when a reason is found, but even then the emotional pain is overwhelming. The shock and hurt of having our baby die is terrible and what you express is so true: "my life is drastically missing one of its parts."

I only wish that you were here for me to give you a hug. I hope that in some small way knowing that you are not alone in your walk and that others do care will give you some comfort.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Little Baby Girl, Elizabeth

Our little Elizabeth is gone and our hearts break for her.

I was all most 8 and half months a long with her. My husband and I went for a check up and that is when our world changed for ever. Ever thing looked good and the doc wanted to do one more ultrasound to make sure her head was down. And that is when we found that she had a mass of some kind in her belly that should not be there.

The doc sent us from the office to the hospital for a better ultrasound of the baby. We get there for the ultrasound hoping to find out what is going on with our little girl. But after the ultrasound was done and we are waiting on the docs to talk to us we are told to go down to the womans center (where I was to give brith in Janury)and the docs would talk to us there.

Next thing we know I am being checked in and they want to keep a eye on the baby. We find out there is not a lot of fluid around the baby and they still don't know what this mass is. Long story short the docs feel that they can treat her better outside of me.

She was brought in to the world on Dec. 19, 04 at 9:41 am by a C-section 5 weeks early. I never got to hear her first cry or get to see her come out. The docs got her out and she was taken right away to the NICU to get worked on.

I got to see my baby two hours after she was born on my way to my room. I spent 15 mins with her. I rember seeing how small she was and an iv in her little head - she needed to help breathing.

She had to be airlifted to the children's hospital where there were people there that could help her. She was less then 6 hours old when I said good bye to her and prayed that she would make the flight there.

She made it there and was doing fine and she was having the best care they could have. My husband went on to be with our baby and I had to stay in the hospital to recover more from the c-section. I got out of the hosptial a day early and my mom drove me to Oklahoma City where my little girl was.

We found out that the mass was a meconium zest in her belly. On top of that her kidneys where not working. She was not able to go under any kind of surgey for she was so unstable.

We prayed that everthing would work out and she would be fine and able to came home with us. But we came to a point where she was tired of fighting and hanging on. My husband and I said no more no more she can't do it anymore.

I held my baby for the frist time and it would also be my last time to hold her. I told my sweet little Elizabeth that I loved her, her father, brothers, and the rest of the family loved her. That it was ok for her to go that she did not have to hold on anymore and fight.

She left us on Dec. 24, 04 at 9:45pm and she was only 5 days old.

It is hard for me because I never got to hear her cry or feed her just do what a mother should do with her new baby. It was hard going home Christmas day and leaving her there. I walked out of two hospitals without my baby.

We laid to rest our baby that Thrusday. I lost it for it hit me like a ton of bricks that she was really gone.

I find myself just wanting to hold her one more time and I can't. Our home should be filled with joy and happyness of a new baby but the house is quiet and cold feeling.

We have had all this plans for our baby and now those plans will never happen for us. I sleep ever night with her stuffed animal that I got her and was with her when she was in the hospital in her bed. I hold it close to me at night and cry myself to sleep.

When I see other babies I fight back the tears and want to tell the mom and dad that they don't know how lucky they are to have what they have. And how much I want what they have - to feel that joy of a new baby to love and watch that baby grow up.

And now if my husband and I want to have children I want to feel the peace of bringing a new life in to the world. I will be high risk from now on. We where told that I did nothing worng and this was some thing that is like a dime a dozen. But it is not fair that I did everything right and I lost my baby and someone that does ever thing wrong like drugs, drink, ect..goes home with a baby that is healthy. Not fair that we won't have brithday parties to plan and first day of school to look forward to.

I hope someday to find peace and be able to look at my baby's short life and find joy in it. But for now I cry on my husbands lap just wanting to hold her one more time.

You where born to soon and born so sick. You were so brave and a fighter. But in the end we had to say goodbye too you. Before you left us you did a great thing. You brought together so many people that would have never came togather. Your father and I love each other so much more and so much closer. And for that I say thank you Elizabeth. I love you so much and well all was keep you in my heart and never stop loving you. Love all ways, Mom

Elizabeth Marie Mann
12-19-04 12-24-04
Died soon after birth
Oklahoma City Childrens hospital


Marcia's thoughts: All you shared is so heart felt and so true to the story of our losses. You summed up what I hear almost every day and in every group. Our reality is so hard for us to take it no wonder that the world around doesn't usually understand. This is why we must wear our Awareness pins, march in the March of Dimes Walk, and support research in the medical world.

The important part of what you wrote is to remember your love for your baby, what this sweet baby, Elizabeth has done in your life just by her presence and to carry that love forward. That is important so you can honor her presence. It is wise to grieve...important to grieve...and to find your new path. I hope that some of what is on this site will aide you in that journey and some of the links to books and other information will support you as well. Take care..

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Miracle, Gabrielle Karisma

When I became pregnant I was excited because I had an early miscarriage a few years back and I had my right ovary and tube removed in August 2003. I was concerned about problems but I thought that if I made it to twenty weeks we would be o.k.

Well when we went to my twenty week ultrasound. We found out that we were having a girl and at the same time there was a problem with her little head but doctors did not know what the problem was yet. I started seeing the specialist and then I was told that she had an enlarged vein of galen which causes heart failure at birth but is not diagnosed right away. It is rarely found in utero but hers was found and I was thankful that it caught early because this would give the doctors a heads up.

She was stable and very active, so we just had numerous ultrasounds and appointments. On the Sunday after Thanksgiving she was not moving, but I tried to wait and see because she may have been sleeping. That night I went to the hospital and I had developed breathing problems and she did have a heart beat but it was flat (no activity).

I was admitted and doctors were concerned she had a stroke. I was released on Tuesday and I had to go to specialist on Wed to see what was going on. I made it to my appointment and I was told there was no hope. My daughter had a brain hemorrage and stroke and could not swallow and the fluid was just building up.

I just hit my seventh month and I was lost. They told me I would need to have c-section that week for my own health but they sent ultrasound to my pediatric neurosurgeon just to be sure and it was clear she was gone. I was her life support and that was why her heart was beating.

Thursday, December 02, 2004 @ 8:48 my baby was born and she never took her own breath but her heart stopped after a little over an hour.

I held her and even my son held her and other members of my family were able to hold her to say good-bye. We have pictures and momentos that I cherish but I want my baby in my arms.

The pain is fresh and I am coping but it seems like a dream at times and not real. My husband keeps busy and he is strong, my son is his usual happy self and I adore him. I am back at work and in my routine and I am just keeping myself busy but I am still feeling the effects of the c-section and losing milk from time to time and I am unable to hold my baby girl.

I am glad to have found this site and I hope to begin meetings and go through the healing process and one day be able to help others once my pain is not so fresh but in the meantime writing my feelings has helped.

In memory of Gabrielle Karisma Jordan 12-02-04-12-02-04 4pounds 6 ounces Mommy, Daddy, and Michael love you!

Gabrielle Karisma Jordan
Died soon after birth


Marcia's thoughts: Please be gentle with yourself as you begin to heal. You have just been through a very tragic experience that many do not fully understand and it is wise to give yourself "permission to grieve." Know that your feelings and reactions are normal for someone who has experienced the death of their baby. I hope you will join us at some of our meetings.

I see that you are located in the Atlanta area and you mentioned about joining us at our meetings. I hope you do. If you haven't already, call our number or email us, and we will send you a Parent's Packet from our local group. Enclosed in that are some brochures about grief and our groups (where they meet and when), a suggested reading list, and a “SHARE Atlanta” booklet with thoughts shared by our members about SHARE Atlanta and healing. You will receive a years subscription to our newsletter, at no cost to you.

SHARE Atlanta's Angel Memorial Garden with memorial bricks to remember your baby is in Babyland in Arlington Memorial Park Sandy Springs. Many parents find it very healing to visit the garden. There is a memorial pathway for parents to include their special baby's name or loving thoughts about their baby in either a memorial brick for the pathway or in a keepsake brick (for your home). You can see pictures of it on our site (under ***Angel Memorial Garden) and in our Parent Packet. You might have seen the article about our group and our angel in the Living section of Sunday, October 5, 2003 Atlanta Journal-Constitution. We have a link to it on the front page of our site and I have copies of it at my Women's group.

Our annual Walk to Remember that we have during the annual March of Dimes walk is in April. We are also starting a "Blankets of Love" project and I will be sending out more information about that soon. All of these activities and more are on our website and talked about in our newsletter. I will send you a copy of the January Updates that I sent out at the beginning of January. Please take care...

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Bailey Owen Miller

Bailey was born on Monday, June 21, 2004 after 7 1/2 hrs. of labor at 2:48 at nega medical center. He was born not breathing and at 2:51 he finally strated to breath. He went straight to the nicu where he stayed for 1 day until they sent him Scottish Rite Children's hospital where he until he was 5 days old.

When he went home he had to go to the doctor about every 2 weeks to have blood drawn. He was born with kidney problems. They told me when I was pregnant with him that he wouldn't make it til he was 2 months old. He didn't he died August 19,2004 2 days before he would have been 2 months.

I woke up that morning and there he was in his bed. They told me it was from sids, but I don't beleive that b/c the parimedics that come to my house said it look like a heart attack. The cornor said the same thing but the crime lab said sids. He had to go there b/c he died at home.

His big brother wouldn't leave his bed side until everybody came in the hose screaming and crying. Then he got under the bed and wouldn't come out even for me or his daddy. That is a day I will never forget - the looks on everybody's faces. My husband I don't think he will ever be the same. He will not talk about it.

Bailey Owen Miller
06.21.04 to 08.19.04
Dahlonga, GA
March 2005


Marcia's thoughts: We have a section for support around Sibling Grief as well. Perhaps you can find some supportive information in that section. I think sometimes our children don't have the words to describe what they feel (well, it is hard for adults to find the words...isn't it.). I have talked to siblings as they grow older and "find the words" and they begin to understand what happened back then. Seeing you work through your grief and regaining hope helps them cope, too. They usually are coping better than we do...they are caught up in the world of childhood (a positive thing) and revisit their pain less frequently. As they can express themselves, they understand more about what happened. Of course, if we are really concerned because their grief is all consuming, a counselor often can work with siblings to help them better deal with their thoughts around the loss. Loving our living children and listening to their needs is very important...letting them do some of the ideas in the section might help as well. My thoughts will be with you all.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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January Baby ~ Thomas A. Rennecker ~ 1/14/05-1/22/05

Thomas's arrival was an early suprise to us. You see, he was born at 35wks, 4 days. I began to have contractions and spotting on Jan. 13th, 2005. The doctor had us come to the hospital to get checked out. Sure enough, our baby was on its way. We were so excited.

We knew that because baby was coming early, there was a chance of breathing problems, etc, however, there was a NICU right by and I was assurred we were in good hands. I labored for 3 hours, and suddenly the heartbeat had disappeard. Many nurses and doctors ran into my room and I was in the middle of talking and laughing with my mother and aunt. I was immediatly rushed to the OR for an emergency C-section.

While in the OR, the monitor picked up the heartbeat and things slowed down a bit. They had enough time to increase my pain meds and get my husband into the room. Thomas was born at 12:28 am Jan. 14th, 2005.

We knew things were going all wrong when he did not cry. The doctors were frantically trying to intubate him, but were having a difficult time because of a tight jaw, his mouth did not want to open. Once placed on the ventilator, he was taken to the NICU.

No holding my baby, not cutting of the cord. My husband and I were in total shock, not knowing what was happening. After recovery, I was wheeled in my bed to the NICU to see Thomas. The nurses encouraged me to hold him, but I was definatley intimidated by all of the tubes.

After holding him for 10 seconds, he began to crash and the staff had to resusitate him once again. It is the most painful experience I have ever encountered.

We were asked by the neonatologist if we wanted him to continue to be resusitated and if we would like to use life-sustaing drugs and equipment. You see, Thomas was not able to breathe on his own because of the severe nerve/muscle dysfunction. His muscles were very rigid (arthrogryposis) and he could not move.

We did not want our first child to suffer or to experience such a lack of quality of life. We decided to place Thomas in God's hands.

Over the next few days, Thomas stablized on the vent, and Dr.s frantically had chromosome studies, bloodwork, x-rays, etc. done to determine exactly his prognosis. This was all such a shock to us.

My pregnancy was uneventful with no complications. We had no warning. Following many tests, it was determined that Thomas was afflicted with something called FADS (fetal akenisia deformation sequence) which is incompatible with life. We were crushed. My world was spinning out of control.

We spent 8 wonderful days with our little boy. He died while I was holding him in my arms. Very rarely did he open his eyes, but right before he died, he opened them wide and looked first at me, then my husband. We truly feel this was a gift from God, letting us know that Thomas knew how much we loved him.

We spent weeks holding each other and crying. I felt that my life was over. We had made so many changes in our life to be ready for our little one.

My role in life has now been so confused. Am I a mother? I miss Thomas everyday.

The days between crying jags have gotten longer, but I still carry with me a profound sense of sadness and loss. My life has forever been touched and changed by Thomas. I wonder if my life will ever seem "normal" again.

The grieving only truly started for me months after his passing. Prior to this I was totally in shock, only exsisting without much feeling.

I pray everyday that this experience will somehow enrich my life. I know Thomas's life had meaning and he will forever live in my heart. It is only now that I can begin to smile when I think of him.

Thomas A. Rennecker
Died soon after birth
Canton, OH


Marcia's thoughts: Are you a mother? I wrote some of my thoughts and the collective thoughts about that question (that we all ask) in the letter numbered 5/21 to Shannon. I believe we do more for our babies in a very short time than many parents do in a life time. I believe we are always parents...we love these babies dearly. When my dad died, I was still his daughter...and he will always be my dad.

Your thoughts around your grief are in line with what many feel several months from their loss. You have moved through your shock and the reality of what has happened is clearer to you. You feel your grief more (the 4th to 6th month is the "hardest" grief wise for many people - see Sharing Stories/Month by Month), you realize that your baby has died and there is no turning back, and you have confused feelings about your memories and your walk forward.

There are many ways to cope (see Coping Ideas) and the pathway to healing is not straight, but you have options. Wanting to heal (as I wrote to D in the letter 5/28) is an important starting point. Making his presence in your life is also important. I feel as though when we do that we honor their memory and make them a part of "who we are." As I say so many times, I have five children...three in heaven and two on earth and each has helped to make me who I am.

Healing is a slow process, but I believe Thomas...and all of our babies...would want us to honor their memory with healing, not anger, ongoing grief, and disruption. All of these are part of the grief process, but with support and coping, we can choose options that will move us into a positive pathway.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Two Parents at the Age of Seven Teen

In August of 2002, me and my boyfriend of almost one year decided to have a baby. At the time we were both just sixteen. I was one month along in October after trying it felt like forever. I know alot of people would say we were only thinking of our selves. That was not the case at all. I have always loved children since I can remember! Everything with my pregnancy was going great! I was due July 2,2003.

At the time my parents were building on to our house and I would help out to make the day go by faster. Before I knew it the month of March had came. The 26th of that month all of my family had came over to help out with the new rooms. I had laid down on the couch at about 4:00 that afternoon because I had stated to hurt. At this piont I had no clue at the time I was in labor. My contractions were about 5 minutes apart at that time. Well they whent away at about 11:00 that night, when my now fiancee had left to go home.

I woke to a bad pain again at 4:00 that next morning. I got up and got my mom and she came and got in the bed with me. She then started timing my pains from one to the other "my contrctions were now 2-3 minutes apart." I got up at about 6:00 to go to just what I thought would be a trip to the bathroom and back to the bed, but I was wrong. With this being my first baby I had no clue as to what was going on this early. With me not knowing what was going on my fiancee didn't get to be there when our baby was born.

My mom and dad took me to a hospital in Atlanta instead of the local hospital that was only 5 minutes away. I live in Canton, GA which is about an hour away from the hospital that I was headed to. I got to the hospital at 7:10am Sunday March 16th and had my baby girl at 7:38am.

I was so scared because there was blood everywhere when I had to put my gown on, that I thought I had lost my baby. When in the dalivery room after pushing the first time I wanted to stop altogether because the most important person in my life was not there beside me to let me know that every thing was going to be ok. When the doctor told me that my baby would die if I didn't try anymore I just had one push left in me that came out from nowhere.

When Sydney Lanae arrived she came at 1lb and 6oz and 12 1/2 inches long with beautiful black hair. A head full at that!

With every thing going good, and having a great doctor seeing our baby, things were good. I got to go home thet Tuesday night, but without my baby. Daniel and I returned to school the next day. A very big no no for me to do. The thing that was good about it was that me and Daniel had all of our classes together and that made it alot easier on the both of us. Every day after we left school at 3:15 we would go straight to the hospital and stay till 11:00 and be home at 12:00. It was alittle harder on me because as most mothers know that when their baby is in the NICU they hade to pump and leave the milk at the hospital. I had to do this for an hour when I got up before I went to school every morning and an hour at the hospital and agian for an hour when I got home at night.

When Sydney's great and wonderful doctor left the hospital along with the group of doctors that she was with, another doctor stepped in. They first doctor I very much liked because she didn't put any icing on the cake becouse of our age. The other doctor on the other hand would not let us know anything at all. It was even hard to get some of the nurses to give us any info when we would call from school to see how see was doing. When this new doctor came everything went down hill from there.

It all started with PDA, a valve in the heart the would normally close in a full term baby that goes from the mother to the baby. This doctor gave my baby a drug that is suppose to close this valve off and stay that way four diffrent times knowing that the side affect was kidney failure. After this mediciane didn't work they finally did an opperation to close it themselves. BY this time Sydney's kidneys had started to stop working. They doctors didn't think that she would make it throught the sudery ok, but to their suprise she did.

During this time Daniel and I had been going to a support group that the hospital has every Thursday night. The first time that Sydney"s kidneys stopped working was for 11 days "which is not humanly possible and survive." The week before the 11th day came the ladies over the support group told us that we needed to take our baby off all of the machines that were keeping her alive. Although she was very swelled up and not being able to realize whom she was the first time I saw her like that, it did not change my hope and faith in God and the way he works!

We stopped going to the support group and had more of a support group of our own with each other. Whatever was bothering us we talked about it to each other. Our baby girl had gone almost a week when she got an infection and had to have more medicine to help her. After this was given, her little body couldn't take it much longer and her kidneys shut down again. This time we just didn't have the ladies over the support group on our tails it was the nurses in the NICU. The Hospital were going to take us to court and fight aginst us and have the court say that it would be ok for the doctors to take our baby off the machines they had her on. The breathing machine that she was on was the most powerful one that they had there. My baby girl was still very responsive both times that her kidneys had failed her. We could not kill our little girl.

There was only one person at the hospital that was blessing to have there at that time. She was a lady who was very sweet and kind! She was a receptionist that Daniel and I both could talk with, every one else was agianst us. I told her one day that if my baby was to pass on then God would have to take her himself because her job here on earth had not been fullfiled yet. This lady was also a reverend! The night before our baby passed we dedicated her to God with all the love in the world. When our hospital friend heard this she was proud of our decision.

We left that night May 27th and when I just got home I was getting ready to go to bed when the house phone rang at about 11:30 at night. It was the hospital. Hoping that this was all going to blow over me, Daniel, and my parents whent back to the hospital. I had a bad fealing inside of me, I was shaking so bad all over as Daniel held me telling me that it would be ok, but somehow we both knew that it really wasn't.

When we had got there our receptionist friend was on night shift and she had been with our baby every since we had left. This was at about 1:00 in the morning. There was no one else there but my family and some friends from church. It was 1:38 when our baby passed on in my arms. It was the first time that I had ever held her. It was then May 28, 2003 when Sydney passed.

It has been two years and as I still thank God for my baby girl and our friend from the hospital. Daniel and I are waiting on our second baby to get here, but not so soon. This one is due Oct 1st.I just went through surgery the 31st of March. The doctors say that the reason I had Sydney so early is because my cevix were weak and it still is. So maybe with this surgery everything wil go great!

Hopefully after this one gets here I will be able to open up my daycare some time next spring! All in memory of my baby girl.

I hope this letter has touched many. Please never give up on the smallest miracles in life! I know I didn't! With Love, Kara and Sydney!

5/30"'Holes In The Floor Of Heaven'" revised in loving memory of Sydney Lanae" by Kara (4/7/05) Coping Ideas GA

Sydney Lanae Hinson
3/16/03 til 5/28/03
Atlanta G.A.


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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My Lil'Girl (our family cirle is complete)

I had an emergency c-section on 8/18/05 to bring my lil' gift in the world. Her cry made me so happy. I felt like running to her and never letting her go.

I was told earlier that day that she may have a cyst on her brain and have Down's syndrome. This was a relatively new and shocking development because during my perinatal visits, I was told that my baby was 'fine'.

My husband saw Trinnity for a few minutes, and she was taken to NICU. After I was taken to recovery, I was greeted by my OB and the neonatalogist. I was then told that my baby had to be transferred to CHOA WHAT? I hadn't even seen, touched, kissed, smelled, held, or nursed her yet. I willed myself to move my legs, so I could be transferred to my postpartum room.

They brought her to see me for 5 minutes. I had bad news hitting me left and right after that brief interlude. Then, we were told that she had Trisomy 13. I got myself out of that hospital and to my baby.

That day I felt no pain, I did all the things I needed to do for my Trinnity. I'm her mama and she needed me as much as I needed her. After all the machines and stuff were removed, I was able to see, touch, kiss, smell, and hold my baby. She waited for me to get to her and share time together. What an everlasting gift! She died on 08/21/05 in my arms by my heart/in my heart.

Trinnity R.
08/18/05 - 08/21/05
Atlanta, Ga.


~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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Our Precious One

Our precious Clovis was born just after midnight on 12/18/05.

I remember so clearly when I went into labor. The night before I kept getting up out of bed to use the bathroom, probably 6 times. I remember my girlfriend telling me a few months before that the night before her baby was born she had to use the bathroom many times. So, I thought to myself, could we be getting close? I even ate 2 bowls of cereal so I'd have energy if I did go into labor. I managed to sleep some, then the next morning I felt somewhat normal.

I ate some eggs and drank some water, still thinking maybe we were close to labor. A few hours later my low back cramped up and that feeling didn't go away. I called my Mom and she was so excited because she knew my labor had begun. I told her I'd call back in a few hours. By that time I had experienced the first contractions. I threw up with each one. I knew I was in the throws of it.

We called our midwife and asked him to come over. I was in labor! Our midwife arrived and he checked me (yes, a male midwife but I swear he was a woman in his previous life). I was almost completely dilated. This was surprising to me, I thought I'd be in labor for 2 days, but my body was doing it's thing.

I labored some in the tub. I took sips of the diluted apple juice I'd prepared the day before. Everything was going so well.

I was told I could start pushing. I felt my baby move down. When his head crowned my doula told me she could feel his head rooting. Our baby would be here soon! I focused on that thought. I told myself to push this baby out so we could start calling everybody! After almost an hour of pushing, Clovis moved through me. I will never forget that feeling.

Our doula placed him in my arms and I couldn't believe I was holding my son. He was so pink and so beautiful!

He wasn't breathing so we stimulated him and urged him to take a breath. My midwife knew something was wrong. He shined a light in his eyes and they were fixed. He intubated my baby and before I knew it we were calling 911. I was numb. Now, as I think about that night, I think I was protecting myself, a natural reaction when something so unbelievable happens.

When we arrived at the hospital our little newborn was on a ventilator. The doctors told us he had no brain activity. How could this be? I had such a healthy pregnancy and a perfect labor. Clovis looked perfect in everyway as I was holding him for the first time, just an hour ago. The neonatologist told us Clovis wasn't going to make it.

My husband and I listened to her describe all the drugs they were giving him (he was seizing) and all of this medical talk as we just stared at her and thinking to ourselves, "our baby, our baby, how could this be?"

The doctor left and we held each other, crying. We went to be with our son. We held him and talked to him for hours. We looked at his perfect little body and stroked his strawberry blonde hair. We didn't want to leave him.

I still wish I had spent more time with him, just to hold him a little longer and feel the weight and warmth of his body. I was so calm then. My mothering instincts were so present as we held and spoke to our baby.

Clovis died peacefully in my husband's arms. He was comfortable and with his momma and daddy the whole time. I believe he was listening to my voice telling him how much we love him as he let go of his last breath. I am so thankful we helped him through his passing.

It's been 13 weeks and 2 days since our Clovis came into our lives. I am searching to find a way to live happily with our angel. I am still in a state of disbelief and honestly I don't think that feeling will ever go away. It is so surreal to have been 41 weeks pregnant, to have delivered my baby, and to not have my baby with me now.

The doctors think Clovis had a stroke. We'll never know for sure.

It scares me to think of losing another baby. We want so badly to have children and to tell them of their little big brother. It is so hard to be patient and to give up control to our future. I am a planner and I've learned that life can not be planned, really. It helps so much to share our baby with others and to talk with other share moms. I know I must fight off the scary thoughts and try to be positive, to hope for our dreams to come true.

I talk to my baby everyday and pray for all the angels and all the mommas and daddies. My sister had a tree planted at her local botanical gardens. We visited the tree for the first time a few days ago and it was so powerful to stand near the tree and to feel so close to our baby. We miss him so so much.

Jen and Tom Mann Clovis Thomas Mann "From Whenever When...'Til Then posted on 3/21/06

Clovis Thomas Mann
Died soon after birth
Placerville, CO


Marcia's thoughts: Jen, I am touched by your story and understand your pain and your confusing thoughts and feelings. So many of our parents feel the same as you have seen with your participation on our forum. This is not easy and there is no quick fix, but grief is "doable" with work and support from "those who have been there or who are 'there' now". You have offered so much to other parents on our forum and I hope that you have found comfort there as well.

Please read our information on our Grief Menu, and I will be sending you an online copy of our latest newsletter. There you will find more support for your healing journey. I love what you have done with planting a tree in Clovis' memory. Holding onto hope is important. Your feelings about your wishes for a subsequent baby are so very real and, again, our parents on the forum have been sharing those with you as well. Know that I am thinking about you.

~~~~~~~~~~~~~~Forever in Our Hearts~~~~~~~~~~~~~

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