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"Sharing" Our Stories/Thoughts - Along this Path

Remembering Our Babies
Newborn Loss - Congenital
Entries '97-2000

I was able to help
reposition her a few times,
and change her diaper...
That meant the world to me!

"The Story of Our Little Angel"


"Never Coming Home" by Lauren (2/98)

"The Story of Our Little Angel" by Kate (3/98)

"Baby Zachary" by Suzanne (8/98)

"Mary Elizabeth" by Patricia (9/16/98)

"Our Precious Son, John" by Lynette (9/24/98)

"Grady, Paul and Me" by Stacey (10/13/98) - New Arrival in June 2001!

"Our Little Sarah" by Wren (12/8/98)

"My Loving Son Blake" by Sonya (4/16/99)

"Jacob's Ladder" by Christine (4/16/99)

"Our Precious Angels in Heaven" by Nancy (6/29/99)

"Hannah Gabrielle-My daughter in Heaven" by Isabelle (9/10/00)

Never Coming Home

"'Tis better to have loved and lost
Than never to have loved at all."
-Alfred, Lord Tennyson

Last May, (1997) after 19 agonizing months of infertility, (including many tests, drugs and even surgery) my husband Greg and I found out we had finally done it ... new life was budding inside of me ... we were parents.

I loved being pregnant! And aside from some nausea during the first 12 weeks (which I actually "welcomed" because that, to me, was a sign that my baby was really "sticking!") I have no complaints. I gained only 10 1/2 pounds during my 35 weeks of pregnancy. I exercised, ate well, and was often told I really had that motherly glow.

During our 21st week we had an ultrasound and our baby was found to be in the fortieth percentile (based on almost 4 million babies) of size. My husband and I are both very petite people, so our doctor expressed no concern over this at that time.

On December 17, 1997, we had another ultrasound and our baby had dropped to the twentieth percentile. Our doctor was somewhat concerned at this point, but said it would be okay for us to travel home to New Jersey (from North Carolina) for the holidays. He said that when we returned he would monitor our progress by doing an ultrasound at each appointment from that point on and would also do fetal monitoring twice a week.

We had a wonderful holiday season with our family and friends and were really only moderately concerned. Our fist doctor's appointment of the new year was on January 6, 1998. Our ultrasound indicated that our baby had dropped to the fifth percentile and fetal monitoring showed very little activity.

I have to stop here a second and tell you, we absolutely adore my obstetrician. He is an older man, who has truly been like a father to us. He was the person who told us we would not be able to get pregnant without some type of medical intervention. He referred us to a fertility specialist and as soon as we found out we were pregnant, we eagerly scheduled an appointment with him. He has laughed and cried with us (yes, a doctor who actually cries with you!) every step of the way.

After calling two other highly respected obstetricians for second and third opinions, our doctor came to us and said he felt we needed to do an emergency C-section. It appeared our child would be happier outside of my womb. Greg and I consented, made a few phone calls to our families and were on our way to have a baby!

I'm not sure if it was my body's natural defense mechanism kicking in or if I'm just a complete ignoramus, but it really never registered that our baby's condition was "serious." I think part of that is that I am a hopeless optimist and I had such a great and healthy pregnancy.

Our precious daughter, Courtney Michelle, was born at 8:29 p.m. on Tuesday, January 6, 1998. She was 3 lbs. 11 oz. and 15 1/4" long.

Courtney had a collapsed lung, persistent pulmonary hypertension, and was having severe seizure activity. The hospital where she was born is not a neonatal intensive care unit site, so we had to have her transported to New Hanover Regional Medical Center in Wilmington, NC. I'll spare you the details, but it took approximately 10 hours before she arrived at the NICU, which would be her home for the next two weeks.

I won't go into the details of her stay there, other than to say we met a lot of "angels" during those two debilitating and invigorating weeks. The staff, other parents, and even patients and their families from other areas of the hospital were simply unbelievable.

After her first week, Courtney's lungs did not appear to be getting very much stronger and her doctors were still very concerned about her seizure activity (which was still substantial despite the fact they were administering two medications to control them.) Two EEGs were done on her little brain and they both came back "severely abnormal."

Doctors gave us best and worst case scenarios with regard to the quality of life Courtney could expect to endure. Worst case ... she would be completely bed ridden and would never learn how to speak. She would be tube fed. Best case ... maybe, some day, she would learn to sit upright.

Greg and I knew we could handle a handicapped child, but that wasn't the issue. Doctors were telling us that our daughter was basically in a vegetated state. The hardest part for us is that she looked so perfectly normal. She was beautiful (if we do say so ourselves!)

Despite all this, we felt that the picture the doctors (5 of them) painted of what her life would be like was a picture of a child who was "existing" rather than "living." At that point, with the support of our families, we made the most unselfish decision either of us have ever had to make in our lives ... we took her off her life support and gave her back to God.

Our precious daughter, Courtney Michelle, died in our arms on Tuesday, January 20, 1998 at 6:35 p.m.

We had a funeral mass for her on January 23, and almost 100 of our friends and family attended. She is buried at Arlington National Cemetery in Arlington, VA (my husband is a Lieutenant in the US Navy) in an area we toured with some of our friends last year. We literally walked right over the ground where she now rests.

At this point, we sort of feel like someone has ripped our hearts from our chests with their bare hands, stuffed them in a Cuisinart on high, poured them into a ziplock bag and handed them back to us. To put it mildly, we are devastated.

Yet at the same time, we also can't help but recognize that the sun keeps rising and setting and we keep waking up every morning. And at least for now, that's proof enough for us that we have to go on ... no matter how difficult some of those days may be.

Thank you for allowing us to share our story.

Lauren and Greg

(Marcia's comment: The pain you feel right now is real and intense. For so many of us, the difficult choices we have to make for these little ones, within a short span of time, is like a lifetime of parenting. Please be gentle with yourselves as you move through the process of grief.

The sun does rise and set, and life in general moves on. The job of grieving parents is to cope and find the path that will lead to healing. ...The quote you chose from Tennyson says it all - "love is the greatest of these" and the one lasting bond for us all.)

Lauren and Greg
Courtney Michelle
1/6/98 - 1/20/98
Wilmington, NC

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

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The story of our little Angel....

I found out that I was pregnant the day before Fathers Day, June 1997. What a wonderful gift for my husband!! It came as a bit of surprise to us since we were still getting used to being parents to our 6 month son. We were nervous and excited!!

I had a very uneventful pregnancy, and was not worried about anything since I had such a wonderful pregnancy before. We went for our ultrasound at 22 weeks and everything checked out fine.

I went to visit my parents the day after Christmas, they live 1.25 hours away. I took Max (13.5 months at the time) with me; we were only going overnight, and my husband had other things to do so he stayed home. I should preface this by saying that I really wasn't feeling 100%, but not terrible either. I was just run down from the holidays, or so I thought and I was 32.5 weeks with a toddler at home; just figured I'd rest while my parents played with Max.

As I was pulling out of the driveway, I looked at my husband (Michael) and he said is everything OK? I said yeah, but just sat for minute, and then blew it off. I guess I sort of had a premonition that I should stay home but I ignored it.

About 1.5 hours after getting to my parents, my water broke. Not a gush yet, but a strong steady stream. I freaked!! I was early! I called my doctor and husband and my Dad drove Max and I the one hour back to our hospital.

As the drive progressed-slowly- my water started gushing more and more, and I started contracting. My father was wonderful and very calm about the whole thing.

By the time we got to the hospital, I had hardly any amniotic fluid left. Anyway, I think I was only at 1 or 2 cm, I don't really remember. My doctor came, and decided to let my body and the baby (we didn't know her sex till she was born) decide if it was time.

For a while, the contractions progressed and I dilated slowly. Then around 8pm or so ( we got there at 4pm) they fizzled out. The neonatologist came in to explain what would happen once the baby was born; I would most likely not be able to hold her right away. The tests that would be done etc.

My doctor didn't want to give me anything to start or stop labor, but it looked like it was stopping. He prepared us for a stay in the hospital and hopefully keep me pregnant as long as possible, but if labor started again, I would deliver. He left and around 1am I sent Michael home to rest. I told him to come back after breakfast.

About 3am, the contractions started up again and I knew I was going to have my baby. They had discovered that she was small for her age, but nothing else. I called my husband and he came right back.

By 6am I'm only about 3cm or so, and begging for pain relief, they wouldn't give the epidural till 5 cm so I got a shot instead to get me by. About 8am they finally decide to give me the epidural and ordered it. The doctor checked me and they started to hook me up, I'm contracting one on top of the other and can't stand the pain, after they lean me forward to inject me, I cry I need to push! I quickly lay back down, not really so quickly, because I have so many tubes in and out of me, and Hailey kept laying on the cord so I was only allowed to lay a certain way, and they were pumping saline into me to keep her floating.

The doctor checked me again and I was 10cm and fully effaced. I went from 6cm to 10cm in 2 minutes!! Must have been gravity! I started pushing (the epidural didn't kick in till after she was delivered). I only pushed a short while, and she was out!

Its a girl!!! 8:33 am. (I had a bad feeling like something wasn't right; I think I sort of knew we would never bring her home-almost felt like when they said "it's a girl" I knew I couldn't' keep her--I can't explain it).

They took her over to her warming table examining her, she never cried. I kept asking is she OK? I don't hear her crying! They told me she was intubated immediately, and I wouldn't hear her voice until she was extubated.

Michael watched the NICU team with her, and before they took her to the NICU they rolled her over to my bed so I could finally see my baby girl, she opened her eyes and I know she saw me! They took her away and finished up with me.

Apparently her cord was very short and I had abrupted, the placenta was also starting to calcify (age). I found out later that Hailey had fetal growth restriction which was why she was on the small side.

We called everyone! She was a preemie 3lbs 4ozs, 16.5 she would be in the hospital for a couple of weeks.

After an hour when I was getting ready to go see my little girl, my doctor came in and said he had some bad news. He explained that she had CDH(congenital diaphramatic hernia). We had never even heard of it before. We couldn't believe it! How?? I asked through tears what did I do wrong? Did I hurt my baby somehow? It's perfectly normal, and totally ridiculous to feel that way.

He told us they would be flying her out to University of Michigan hospital very shortly. A surgeon from UofM came and talked briefly with us and then a nurse took us down to the NICU to see our baby girl, Hailey Elizabeth Rogula.

Needless to say our heads were spinning, and we really didn't completely understand what CDH was (a hole in her diaphram allowing her intestines to go up into the chest cavity restricting lung growth), or what was going to happen to our beautiful little girl.

We just knew that we loved her.

By the time we got down to the NICU, they were finishing prepping her for the flight, and the medivac team had arrived. We met with the neonatologist who flew in to pick her up and he filled our heads with more info and we signed a bunch of release forms and consent forms.

We finally were able to go in and see Hailey, just for two or three minutes though, she opened her eyes again and looked at us when we talked to her. I didn't know it would be the last time she would ever see us I would have insisted on staying with her longer.

Then it was time to let her go, we were told to wait a few hours before heading to the hospital so that they could get her settled and run a bunch of tests. My doctor had given me an early discharge, so I was able to leave almost immediately.

We came home to a house full of family and a very confused little boy. He really didn't know about Hailey, at least as far as we know, he'll probably ask us about "the baby" when he's older and has a larger vocabulary. We gathered our things and clung to our little boy, and headed out to the hospital.

We don't even remember how we found our way, but we did. We visited with Hailey for a while, and went to find a hotel room for the night, neither of us had slept in over 24hrs. The next morning (the 28th) we went back to the NICU feeling very exhausted, confused and depressed.

We were told she was doing well, but it would be a long haul. She needed to get strong enough to have the surgery to repair the hernia, and there was no telling how long that would be. I began pumping breast milk for her in hopes that someday she would be able to take it.

The next 10 days were a series of ups and downs. Very stressful, and extremely exhausting. We would sit and stare at her, and talk and sing and hum to her; I really think she knew we were there. We were willing her to be strong and to get well. We didn't touch her very much, because the slightest things would send her stats soaring or dropping. I was able to help reposition her a few times, and change her diaper or wipe her mouth a couple of times too. That meant the world to me! We commuted back and forth, we needed to be with Max too.

She went back and forth between a conventional vent and an oscillating one, and seemed to be doing OK. They just have so many problems when they're preemie and then with CDH too... The day before she died, Michael went back to work half days, and we took our only day off from visiting with her, she was doing fairly well, and we needed a rest.

If only we had known. We were both mentally and physically drained.

The hospital called the next morning and had to switch her vent again, but she was doing OK, so they said to come out in the afternoon. I knew when the phone rang that it was bad news... just before we were leaving to go out there, they called back and said they had to put her on ECMO, she was not doing very well. We told them to go ahead if it was immediate, and we would be there in 30min.

On the drive out there I had a really bad feeling. We read more about ECMO while driving, we had avoided it so far hoping she wouldn't need to be put on it. They hadn't started the procedure when we arrived, so thank god we had a couple of minutes with her. The surgeon told us how it would progress, it would take 30-60min, said it was relatively simple to do. Yeah right!

When an hour and 15 minutes passed, and still no word, we were worried, Michael really believed she would be OK, but I knew in my heart that she wouldn't. I went to pump and he came and got me 10 min later. The doctor needed to talk to us. They were having trouble accessing her arteries, they were just too tiny. They would try lower in her neck or upper chest, but it didn't look possible.

We were losing her! Our hearts just broke.

The Neonatologist came back a few minutes later to say they would try to keep her on the oscillating vent, but she was not responding well, and would not make it much longer.

We were balling, I asked to hold her and he took us immediately to her. Her nurse asked me if we had had her baptized-no-would we like her -yes-then another nurse quickly baptized her. They asked if I wanted to hold her with or w/o the vent, I said w/o! Just give me my baby girl!

They quickly bundled her and handed her to me and she died almost immediately and I held her and rocked her and cried to her. She never opened her eyes again and I never got to hear her sweet voice/cry. We spent quite a while holding her I have no idea how long. I don't even know what time she died. They took pictures, put her in a beautiful white gown and gave her back to us for as long as we wanted. Then we eventually left with her few belongings in a bag and little purple box.

Her memorial service was beautiful and she looked beautiful. She wore a little pink preemie gown my mom had bought for her and a little cap on her head. I miss my little girl so much, I physically ache for her at times.

I know she is always with me and always will be. Thank you God for blessing us with her... I wouldn't want it any other way. I love you my sweet Hailey......Mommy

Visit Notes to read more of Kate's thoughts.

Hailey Elizabeth Rogula
Other/CDH(congenital diaphramatic hernia
& Fetal Growth Restriction

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

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Baby Zachary

My baby Zachary died on May 3rd of 1998. My pregnancy went well, I thought I was having a healthy baby. I went into labor at 35 weeks and was scheduled for a C-section, as Zachary was breech.

I was so excited, I called everyone and told them in a few short hours, I would have my baby. I wasn't even nervous, just terrible excited, that finally I would have my dream, having a baby.

Things went so wrong that day. I am haunted by it. I find myself three and a half months later rehashing the day over and over in my mind. What I could have done differently, I find myself blaming myself.

When they took Zachary outside of me, my husband and I heard no cry, just sort of a whine. No one was saying anything. My husband and I would just look at each other and wonder what was wrong. We knew something was wrong. You could sense it, something was terrible wrong. We were told they had to rush Zach of to the NICU, he had a mass in his stomach or something was wrong with his bowel, possible a virus.

When they rushed Zachary a way the nurse turned to us so we could see Zachary, and all I saw was this face with such a grin, like as if he was crying for me, mommy, help me. That was the last time I would see Zachary with his eyes open.

The doctors came in and told us that he was on a breathing tube, he was having a lot of trouble breathing, and they were running tests to find out what was wrong with him. The next thing, they came to me and said Zachary was on a ventilator and he definately could not breathe on his own. I will never forget, the doctor looked at me and said Zachary is a very sick little boy. I could feel the concern in his voice, I knew right away that Zachary wouldn't make it. I just knew.

They announced after several hours they were transporting Zachary to Columbia-Presbyterian, which is one of the best hositals in New York City. They said if he needed surgery, that was the place for him to be. So my husband went with Zachary and I stayed all by myself, with his pictures on my chest, praying that he would make it.

Before they took him away, they wheeled Zachary into my room. I was still recovering from the C-section and I was totally helpless.

This was the first time I really got to see him. I studied him for all of two minutes and then they had to rush him away. If only I would have told him I loved him. I had all of these eyes upon me and I was all drugged up from the surgery, I just couldn't comprehend what was going on. This was a nightmare. I got to touch Zachary's soft skin through the transporting unit. I wish I could have held his hand.

After several hours of not knowing what was wrong with my baby, my husband came back to me and said there was no hope, Zachary had something called polycystic kidney disease, his kidneys were nonfuntioning, they said he would die within the hour. There was nothing we could do. So without even a thought, we took him off the ventilator, as we didn't want Zachary to suffer anymore than he had.

When my husband was at the hospital with Zachary, they asked him if he wanted to hold him, and my husband said he couldn't, he couldn't hold him without me holding him, he just couldn't do it without me. I never got to hold him.

He had a terrible hard decision to make, either come back to me and take Zachary off the ventilator and us not be with him or be with Zachary while he died, while I was all alone at the hospital and the only way I would have heard there was no hope would be over the phone. My husband chose to leave Zachary and be with me. I know that was such an incredibly hard thing to ever have to decide, being with your wife or your baby.

We took Zachary off the ventilator and he died in an hour and a half. The thing that is killing me is that Zachary did not have the comfort from his mommy. He knew me all of those months and when it came time that he needed me, I couldn't be there for him and comfort him and hold him while he died. That eats me up inside. To think that my son died with a total stranger, the nurse. I don't even know if she held him while he died. I asked several people at the hospital to have the nurse call me, but she never did. I was so totally helpless. With a cesarean, you cannot even move for hours.

I went to see Zachary after I was discharged from the hospital two days later. Me and my husband got to hold him. It wasn't the same though. I'm glad we did it, but it wasn't the same as being with him and feeling him when he was alive.

I know everyone is partial towards their babies, but when they wheeled Zachary into my room before he was transported, when I looked at him, I mean it, he was the most beautiful baby I ever laid eyes on. He would have had my big eyes, I could tell, he had huge eyelids, and he had my husband's cleft in his chin. So beautiful he was. He would have been a real looker.

So here I am, three and a half months later, I am brokenhearted, my dreams are shattered, and I've got such tremendous pain, such an ache in my chest.

I have some ok days and some really bad days, and every once in a while when I find I'm somehow finding the strength to carry on. I slip and go two steps back. I am so totally devastated. I feel no closure.

I mean how do you carry a baby for eight months and they take him from you and you only get to see him a minute and then he is just gone. It's as if I am waiting to wake up from this terrible nightmare.

What Zachary died from turns out to be a genetic kidney disease and the chances of it happening again are 25%. So not only am I grieving the loss of my son, I am trying to deal with the fact that I may not be so fortunate to ever be able to have a child.

Zachary was my first. I love him so much and miss him terrible. I will never be whole again. I am incomplete. I will always be. I know that. I talk to Zachary now, hoping he hears me, telling him how much I love him, and that I am sorry for what happened to him. People definately take having a healthy child for granted.

It is truly a miracle. Zachary, if you are listening, I love you more than anyone else in this world and I will always think about you every single day of my life. I will carry you deep inside of me for the rest of my life. Without you, my life will never be complete.

Zachary DiMarzo
Died soon after birth/Potter's Syndrom
White Plains, NY
E-mail 8/22/98

Marcia's comment: Not being able to say goodbye to our baby exactly the way we would want is not unusual for parents. We must realize that we can only do the best we can at the time because no one prepares for this kind of loss.

Moms are often under the influence of medicine and dads often have to make difficult choices. We come to forgive ourselves for any preceived mistakes or lack of judgement and know that we love our babies - then and now and forever.

In the grieving process three and a half months always seems like a lifetime-and it has been. We have gone through much loss and shock. But in the whole picture we have just begun our walk towards healing. Please review the "Allowing Grieving to Happen to Heal." We must learn to be gentle with ourselves and not expect our emotions and reactions to move along too quickly. We do heal; it does get easier, but it does take time.

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

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Mary Elizabeth

We found out that we were expecting our 3rd child in December,1997. We were so happy and looking forward to welcoming our child into our family.

In April,1998, we were devastated to learn that our precious little girl had been diagnosed with anencephaly, a fatal birth defect. The months after that were very difficult for us, knowing that this defect would take our baby's life.

Mary Elizabeth was born on Sept.3, 1998 weighing 5 lbs. 5 oz. We treasure every moment that we had to hold her and to let her know how very much we loved her. She was truly a beautiful little angel.

We miss her very much. It was so hard to go home with empty arms, but I have her memories, pictures, and her blanket from the hospital.

I love you, my little angel, Mary Elizabeth.
Mommy thinks about you and longs to hold you everyday.

Steve and Patricia
Mary Elizabeth Karg
Died soon after birth/anencephaly
Atlanta, GA

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

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Our Precious John

On July 26, 1998 my husband and I welcomed our son, John Robert, into the world. John was born to us in my 32nd week of pregnancy.

He had been a very active baby so I became alarmed when his movements lessened and then became almost nonexistant. I remember feeling almost reluctant to go to the hospital that day thinking that I was just paranoid and overreacting.

But because we needed the reassurance that everything was fine we decided to go to the hospital and get hooked up to the fetal monitor. What a relief it was when we heard our baby's heartbeat.

We soon learned that despite the strong heartbeat there was still indications of trouble. The nurse called in the doctor because the monitor was showing the lack of movement of our baby. The doctor did an ultrasound and found that our baby was hydropic (full of fluid). He explained to us that I would need to have an emergency cesarean as they could do more for John on the outside of me than they could on the inside of me.

At this point, not realizing the incredible seriousness of our baby's condition, (because I had never heard of hydrops fetalis before) I remember thinking to myself that things would be O.K. and that maybe he is not as sick as the doctors think he is.

Immediatly following John's delivery he was taken to the NICU and given a blood transfusion. All of his blood counts were extremely low and at this point I don't think the doctors were holding out much hope that our precious son would survive. My thoughts of everything being O.K. began to diminish.

My husband stayed with me in the recovery room and this is when we thought for the first time that we may lose our little boy. We held on to each other and cried what seemed a lifetime. We asked that John be baptised following the blood transfusion. I sometimes feel very sad that because I was in recovery we didn't get to witness our son's baptism.

During my time in the recovery room the nurse kept us informed of all that they were doing for John in NICU. I think in order to prepare us for seeing our son for the first time she explained to us what he looked like. He had a tremendous amount of swelling and bruising because of all the fluid and his coloring was a bit on the bluish side.

Finally they wheeled me in to see our sweet little boy for the first time. His dad and I sat beside his bed without seeing all the things that the nurse had described to us and saw before us the most beautiful baby we had ever seen in our entire lives.

John's first day in NICU was actually pretty promising. The doctor said that he had responded well to the blood transfusion and the nurse reported to us that John had been a bit feisty. He was responding to noises, light, and being touched by moving his arms and legs, was sucking on his ventilator tube, and at times was fussing a bit. These little things seemed to us like such huge gifts and gave us a ray of hope.

Day two and three, however, brought bad news. John was not urinating and because he was not doing this he was retaining more and more fluid.

The doctors and nurses were doing everything they could do but told us that despite their measures it didn't seem likely that our precious boy would survive. John was also telling us that he was beginning to grow tired and weak. We knew we would soon need to make a decision of what to do.

A few hours had passed when the nurse came to us and said that John had begun to have pulmonary hemorrhaging and the monitors that he was hooked up to were indicating trouble.

It was then that we were able to hold John for the very first time. Still hooked up to all the machines and tubes he laid in my arms and his father at his side and we cried for we knew that it was asking too much of such a precious boy to fight any longer.

They removed the ventilator and all the tubes and brought John to us in a private room so we could be alone with him. Before they had brought him in I asked my husband, "Do you want to hold him or do you want me to?" He said to me very sweetly, "A baby boy should die in his mother's arms." So it was in my arms that John took his very last breath.

It is our belief that with this suffering comes strength and wisdom. We hope someday we will be able to help someone like so many people have helped us.

We take a moment each day to remember all the things that we are grateful for and John is always at the top of our list. I have said it so many times - Our John made more of an impact in four days than some people make in a lifetime. For this we are truly grateful and proud!

Thank you for giving me the opportunity to share my story. Writing this has helped me so much. Every time I share John's story I validate his life. He was such a gift! Thank you so much.

John Robert
nonimmune hydrops fetalis /32 weeks, kidney failure
Billings, MT

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

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"Grady, Paul and Me"
This is an edited version of the letter
that I mailed to my friends following
the one week anniversary of the death of our son.

When I first discovered I was pregnant with our first child, Grady Joseph Mulrenin, on December 21, 1997, my husband and Grady's father, Paul, was at a football game. I chose to tell him in a creative way that we were going to have a baby by tying a red ribbon around the pregnancy test stick and placing it in his Christmas stocking.

When he arrived home, 5 nail-biting hours later, I told him he had an early Christmas gift. He shook out the contents of his stocking, eyes aglow, and instantly knew this was the best present he'd ever received. He swung me around and we gleefully called our families to announce our exciting news.

The next six months were the most joy-filled of our lives. We sang and talked to our unborn love, read stories to him (his favorite was Guess How Much I Love You), and played classical music and lullabies through headphones precariously placed around my ever-growing womb. I began a journal for my baby to read one day as well as one for my girlfriends entitled BBS notes (which stood for Bloated Bellly Syndrome or Blossoming Belly Syndrome, depending on my mood!) Being pregnant was the greatest time of my life.

When we first saw our beloved Grady on the ultrasound screen, I waved to him through many happy tears of love. He was the culmination of such a profound love between Paul and me, the treasure of a lifetime. Although we chose not to find out whether our child was male or female, I always knew in my heart what he was.

Our families, too, were greatly anticipating the day when this adored baby would debut. Through baby showers and nursery preparations, Grady was the center of a tremendous amount of love and attention.

Until my bi-weekly doctor's visit at 31 weeks, everything had been normal and healthy with me and Grady. Upon this visit, however, my OB was concerned about my increasing blood pressure and swelling and placed me on a 3 day bedrest.

I was scared and upset as I felt I had done everything by the book - literally! - to ensure that me and especially my baby were as safe and healthy as possible. I reluctantly started my bedrest with a successful first day.

The second day, however, I awoke to an upset stomach, which increased throughout the day as my husband called from work and my mom and sister visited me. By late afternoon, I knew whatever it was was not right and insisted that Paul come home immediately.

He did and he and my mom packed me up and drove me to St. Joseph's Hospital, where it was determined that I was not suffering from a stomach ailment, but from contractions. I wasn't dialated, though, and was administered an IV and a special shot to stop the contractions. My OB and the nurse thought I would be on my merry way home very soon. The shot did nothing, so an hour later, he prescribed another shot and another IV.

By 11 that night, it was obvious that these shots were not going to cease my contractions, so they gave me yet another IV and a special pill. It was determined that I would remain at the hospital overnight and an ultrasound would be performed the following morning.

The contractions never did stop, only got more intense. I threw up and said things that I was sure would send me to hell. I was so sick at this point and my beautiful and wonderful husband NEVER left my side.

He never slept nor ate and let me squeeze his hand until the blood flow stopped. He was absolutely consumed with worry for me, but never let this show for an instant.

At 4 a.m., my nurse checked my cervix and I was 4 cm. - in labor and no turning back. Paul was thrilled and I was terrified. My nurse, however, assured me that babies born at 31 weeks were very much able to survive.

Paul immediately jumped on the horn and called all of our families. It seemed everyone was there in an instant. The anesthesiologist, the most welome sight for my eyes, appeared and gave me the magical epidural that finally relieved me of all my agony. I rapidly proceeded to 10 cm. and my waters were broken by my OB. I was so calm and relaxed by now.

So the pushing began. I pushed and shoved for about 2 hours, with my absolutely incredible coaches, Paul and my mom, at my side.

Paul had brought my special Tinny bear, whom I've had since I was born. He was at my side, too. We could see the crown of Grady's head, but no matter how hard I pushed, he didn't seem to budge too far.

Around 8:45, my ob decided he didn't like the way Grady's heart rate decreased every time I pushed and was concerned that Grady was coming sideways down my canal. He waited for him to turn, then began the critical phase so that I wouldn't end up with a C-section.

The neonatologist and several of his nurses were waiting for Grady at the incubator at this point. I had oxygen put on me and my epidural was increased. The only thing I was aware of was the pushing. I never knew that I or my precious baby were in any kind of danger.

Once Grady's head emerged, my OB was very alarmed - "What's holding this baby up?" Paul said he shouted more than once. I pushed an pushed. The OB attached a suction to Grady's head and pulled while my nurse pushed on my abdomen. He reached up in me and literally pulled Grady out of me, after cutting me several times. Finally, Grady was born at 9:40 a.m. on Friday, June 26, 1998.

"What is it? What is it?" I screamed. But, my angel was so terribly disfigured and with "multiple anomalies" that they immediately whisked him away to the neonate.

My mom and Paul were collapsed against me, their arms around me, sobbing as I was sewn up.

A second neonate was called, stat, and more nurses appeared. I only knew he was a boy by the way they referred to him as "he". They were surrounding the incubator and I couldn't see anything. Then they took him away and I went into shock.

My mom, bless her sweet heart forever, performed the horrid task of going to inform all of our waiting family. They prayed.

Paul couldn't stop crying. I was shaking uncontrollably from the hormones and medication and I guess, shock. I only cried a little once when I was still in that labor room. It was when the social worker came in, and I told her I was a special ed. teacher.

After I was moved to a recovery room, the neonatologist came in to consult us about our beloved baby. Our little one had accumulated a tremendous amount of fluid in his abdomen, which is why he had so much trouble coming out. His brain was bruised and spine fractured, meaning he felt nothing below his head and there were several other problems, too.

The neonate was very honest from the beginning and I will appreciate that forever. My OB was baffled as to what had happened. My ultrasound at 20 weeks was normal.

Around 4, we made arrangements to have our son baptized Catholic. We attended the very special ceremony with the hospital chaplain, my nurse and Grady's nurse. It was the most beautiful baptism I've ever witnessed.

At 6, we were told that Grady would not be fighting much longer. So, I was able to shower and prepare myself to send my son to Heaven. The chapel was cleared and Paul and I were taken there. They dressed our beloved Grady in a little blue outfit with bears on it, a small cap and a cuddly blanket. They removed him from all the machines and brought him in to us.

Paul and I both held him and kissed him and told him how very proud we were of him. He was everything we wanted and more. At 7:05 p.m., I was holding him, with Paul's arms wrapped around both of us when he entered God's kingdom. It was the most peaceful and special moment of my life.

Afterwards, all of our families were able to hold Grady and tell him how much they loved him. This was very important to us. The social worker prepared a memory box for us. In it was the outfit, cap and blanket Grady had used, his thermometer, some locks of the little hair he had, foorprint pictures and Polaroids that had been taken of us with Grady and Grady by himself.

I went home the next day and cleaned out Grady's nursery the day after. All of the clothes that we had received for Grady went to the neonatal ICU of St. Joseph's hospital, as I hoped that other parents would get to hold their sick babies in something special and darling.

We buried our son on Monday, June 29, 1998. Only our immediate family attended and it was exactly the way we wanted it. Simple and beautiful for a simple and beautiful soul. Again, I was overcome with a profound sense of peace. Grady was buried with my gold finger Rosary and my beloved Tinny bear in the "Cherub Garden" of a very close cemetery.

We held a Memorial Mass on Saturday, July 25, 1998 for all of our family and friends and it was well attended and received. Paul and I visit Grady's grave nearly every day and each Friday, celebrate his weekly birthday with a cupcake and prayers.

Paul and I feel that everyone who was present at the hospital and Grady's funeral will be affected for the rest of their lives in some way by the life of our little boy, as short-lived on earth as it was, and will continue to feel his presence forever.

Paul and I have never been more in love. Our faith has increased tenfold and we are absolutely certain that God chose us to make an angel for Him. It is comforting to us to know this, and that we created one of the purest souls to ever enter His kingdom.

Grady is watching over us, as well as others who need him. I couldn't be more honored. We had a son, and nobody can ever take that away from us, no matter what the future holds for us.

There are many peaks and valleys ahead of us, but our love and Grady's love, as well as God's strength, sustain us.

Thank you for keeping the memory of our beloved son,

Grady Joseph Mulrenin

alive in your hearts. May God bless you all.

For more thoughts from Stacey..."Grady Joseph Mulrenin's Memorial Mass," "Don't Ask Why; Say Thank You" by Stacey, Grady's Mama (10/13/98), "We have collected so many special remembrances since the birth and death of our first born, Grady...." by Stacey (10/22/98) and New Arrival, Eion Graham on June 5, 2001


"Thank you for the site and for the pathway" by Stacey (6/12/02)

Grady Joseph Mulrenin
Died soon after birth
Tampa, FL

Marcia's comments in 2002 after receiving a note and news about Eion's arrival: I use parts of your story in one of our group's booklet, and it helps so much. Now, I can add this wonderful news. I know that Grady is carefully watching over Eion and rejoices with you.

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

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Our Little Sarah

My husband and I just lost our baby girl, Sarah, on November 24, 1998 -- two days after her birth on November 22. As you can imagine, we are deeply heartbroken, greiving, confused and trying desparately to understand this disease and loss.

Sarah was our first child, one that we bonded with so much throughout my pregnancy. We expected Sarah to be healthy because I had five sonograms and amnio during the pregnancy.

We would very much appreciate basic information on the disease, stories from other parents who had "normal" fetal sonograms, as well as stories from parents who discovered their child's disease as a result of a fetal sonogram. Many thanks in advance. Love, Wren, Robert and baby Sarah

Entry #2: Thanks so much for your response. Sarah had a congenital diaphragmatic hernia (CDH). Basically, she had a hole in her diaphram and her intestines grew into her lung, and she did not have any left lung capacity.

After she was born, she was transferred to Children's Hospital in DC and while there she required 100% oxygen.

They were planning to operate once she was stable, but her right lung collapsed and then she got air in her pericardium and her heart failed. I would really like to hear from folks whose children also had or have CDH. Again many, many thanks. Wren

Sarah Elizabeth Rehm
November 22 - November 24, 1998
Died soon after birth/CDH
Washington, DC

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

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Blake was my second son born. Born with a very rare syndrome called lissencephaly. A rare disease which effects the structure of the brain. A normal brain is lumpy, where Blakes brain was completly smooth, allowing no growing of the brain.

We had to turn off his life support system which wasn't easy to do. It has been 6 weeks now and I am just starting to go through this grieving period, leaving me feeling miserable 21hrs a day.

Is there anyone out there feeling like this who may want to talk to me ,or perhaps someone has gone through it is willing to help me. Please I will reply your letters the day you write, all I can do is sit and type to a machine as it can not tell me to shut up.

Brisbane, Australia

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

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I waited all my life to have a child of my own. Early February of 98, I found out I was finally going have a baby of my own. I found out by accident, I was only about 2-3 weeks pregnant.

A few weeks later I experianced extreme morning sickness. I had to be put in the hospital. It was bad. But I was very happy to be pregnant.

I was going for my first ultrsound. I had my tape. My sister went with me (my husband had to work and could not get off work).

The technician laid me on the table and put that cold gel on my tummy and began her work. She was having a problem getting his arm and leg measurements. So she poked and pushed on my tummy thinking the baby might be curled up asleep. After about 45 minutes, she decided to send me to a perinatoligist. At first i did not give it a second thought.

So the next day I went to the new doctor. They did another ultrasound she told us it was a boy, took some measurements and told us to wait for the doctor. He looked over the notes and asked us to go in to the consultation room.

He then dropped the bomb on us. My son suffered from a rare form of dwarfism that affected all his bones including his ribs. He told us that if by some chance I made it full-term he would be stillborn from having a small chest cavity. His lungs would not have room to grow.

He told us to come back in 4 weeks to verify his result. So we went back, and the result was the same.

We had some very tough decisions to make. Do we abort, to try and induce labor early so that genetic testing can be done, or try and carry fullterm.

I was told that more than likely I would miscarry him. Well, after alot of talking we decided to try early inducing of labor. I could not go thru another pregnancy not knowing if it would happen again.

So we went to the hospital. After 5 days he never came. So we tried to carry fullterm.

It was very hard to enjoy the rest of the prenancy, knowing what the result would be, but I wasn't sure if I would ever be able to get pregnant again so I wanted to hold my baby dead or alive.

I would go to the monthly appointments and heard his strong heartbeat which gave me some hope that maybe they were wrong. I suffered some normal but severe complications.

After a procedure was done to remove some amniotic fluid, he could not swallow the fluid because his chest was so small therefore it kept building in my tummy.

That night, I was getting ready to go to bed and guess what? My water broke. I was 37 weeks. So we went to the hospital. They had to induce labor and the pain began.

After 26 hours of hard labor we realized he was not coming out the normal way. So, I had a c-section.

I remember when they took my son out of me I began to panic, I knew he died in side of me . I thought to myself "he made it this far why could he not wait anohter 30 minutes". But I was reassured that he was alive!!!!! I never heard my son cry, but his heart was still beating strong. After they were done, they took us back to the room.

My son was still alive. My whole family was there to see him and say hello and goodbye.

I was very tired, dozing in and out. But for some reason, I perked up and my son was placed in my arms for the first time, alive!!!!!!He was the most precious sight I had ever seen. Then his heart stopped. My daddy was the first to hold him and his mommy was the last. How perfect was that?

Because my son made further than the doctors said he would, we decided to donate his body to cedar-sinai hospital for research. Hopefully my son's short life will make some type of difference with this rare form of dwarfism.

I miss him so much!!! I am so glad to have found SHARE. I now know that I am not the only person going thru such a terrible experience.

I know one day I will hold my son and I will get to hear his precious voice. I love you Jacob!!!!!

Died soon after birth

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

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Our Precious Angels in Heaven"

In August, '98 I had a miscarriage. I was 11 1/2 weeks pregnant. After some time my husband and I decided it was time to try again. I became pregnant in December.

At 29 weeks I went in for what we thought was a routine u/s,(I was carrying BIG). My husband and 3 year old daughter were there. As you can imagine we were anxious and excited because we could also learn the sex of the baby.

Shortly after the u/s began, the doctor shut the machine off and told us she had some bad news. The child we were about to give birth to in 10 weeks had a lethal disorder called thanatophoric dysplasia and would have no chance of living after he was born because he would have no lungs.

We felt as though we were in a nightmare and when we woke everything would be fine but that was not the case.

We needed to make decisions that we thought we would never have to make. We met with our priest and he made arrangements with the hospital to have our son baptized and to have pastorial care for our family.

On June 15, 1999, I was induced I gave birth to Matthew, 2 lbs, 12 oz., 13 inches long and so beautiful. He was pronounced dead an hour later because of his dysplasia. We took many pictures and had our family come and hold him. I was able to spend 4 hours with my son and I will always have those memories.

Matthew was laid in a white casket with a christening outfit and looked like a precious little angel from God.

We know that one day we will see him again and be able to hold, tickle and sing our baby to sleep. Until then, I will hold on to our memories. I have made a scrapbook of all his things, footprints, hair, photos, even his hat.

My daughter and I talk about Matthew in heaven. She says Matthew is her angel and Alexandra (my first miscarriage) is my angel.

Thank you to all for your support during these very difficult times.God bless! Nancy

Matthew Paulo Meneses
6/15/99/thanatophoric dysplasia
Westfield, MA

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

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Hannah Gabrielle-My daughter in Heaven

My husband and I have a beautiful little boy who is 1&1/2 years old. We decided to add to the family soon after his birth. We became pregnant with our second child in October of 99. We were very excited and happy. I would look at people pushing double strollers and think to myself in a few months that will be me. I've never been happier.

But all that changed in March when we learned that something was wrong with our baby. The blood test that we had done at 18 weeks came back abnormal. After more tests we were told that our baby was a girl and that she had trisomy 9, a chromosomal disorder.

The doctors said she had little chance at surviving. We were devastated. There was nothing that could be done except to wait. The doctors said that she would probably miscarry and that most babys with this condition don't make it this far.

I would go in to the doctors office every two weeks to see if our little girl was still with us. This was very hard. The doctors kept telling us that we would lose her soon but each visit we still could hear her heart beat.

Finally on August 2, 2000 our little girl was born. She was only 3 days early but she only weighed 3lbs 3.3oz. She only stayed with us for about 15 minutes before going to heaven.

I like to think that she hung on as long as she did because she wanted to come and say goodby before becoming an angel. I am so glad she did. Even though the pregnancy was a very difficult time for us we were very grateful to be able to hold her, kiss her, and tell her we loved her before she left. We buried her on her due date next to her grandfater.

To my little girl in Heaven: I love you. I miss you. I wish I were holding you.I wish I could hear your laughter and see you playing with your brother.I know your in heaven safe and warm. One day we will meet again and i will rock you to sleep and sing you a song. Until then know that I carry you in my heart forever.-mommy

Hannah Gabrielle Snowden
Died soon after birth

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

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