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.
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
E-mail
~~~~~~~~~~~~~~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)
SARAH
JOE RICHARD MARK BAUCKHAM
14TH - 15TH NOVEMBER 1999
Died soon after birth/oligohydramnious
ENGLAND
1/6/02
E-mail
~~~~~~~~~~~~~~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
Amy
Isabel Christine McLaine
12/18/01
Died soon after birth
Powell, OH
1/21/02
E-mail
~~~~~~~~~~~~~~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
1/28/02
Died soon after birth/RENAL AGENESIS (no kidneys)
Decatur, GA
E-mail
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
ROBIN
KAMERRON ISAIAH SPEAS
01/24/02
Died soon after birth
WINSTON-SALEM, NORTH CAROLINA
2/10/02
E-mail
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 fault...it 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 days...at 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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IN LOVING MEMORY OF BAKER
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.
JILL
BAKER CHANNING MUHAW
1/3/02
Other
LAWRENCEVILLE GA.
4/02
E-mail
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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.
Margaret
Camden
4-18-02
Died soon after birth/heart issues
Atlanta,Georgia
5/17/02
E-mail
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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)
Janna
Avery Nava Seskin
2/23/02-2/28/02
Died soon after birth/a form of Potter's Syndrome
Atlanta, Georgia
6/11/02
E-mail
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
E-mail
~~~~~~~~~~~~~~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.
THANKS FOR READING OUR STORY.
Lisa
Dylan Chevy Cormier
Sep.24/02
Died soon after birth
Halifax,N.B. I.W.K Canada
3/1/03
E-mail
~~~~~~~~~~~~~~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,
Mommy
Camille
Vincent Richard Hughes
2/11/03
Second trimester loss
Roanoke, Virginia
3/11/03
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