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"Sharing" Our Stories/Thoughts - Along this Path

Remembering Our Babies
Newborn Loss - Heart Condition
Entries 1997-2000

The hospital staff was awed
by the way he calmed
hearing my voice.
I planted a kiss on his lips!
He stopped crying and seemed so content.
Seattle, Washington


"Taylor Ryan Kivisto" by Sharon (11/30/97)

"Your Baby is Sick" by Christy (1/98)

"Joshua" by Donna (10/97)

"Joshua Wayne" by Sandy (9/97)

"From God's Hand to Ours and back to His..." by Bonnie (6/98)

"Our story-Tracy and Donna" by Donna (6/98)

"Andrew" by Ellen (7/98)

"Precious Angel" by Chrissy (10/8/98)

"Nacheal Maile" by her mom (4/29/99)

"Baby Grant" by Shelli (5/19/99)

"Adam Kenneth Lowe" by Tracey (6/11/99) and A Letter "My Darling Adam" (12/24/99_

"11 Days with Kapono" by Shelby (12/99)

"Georgia" by Kylie" (1/2/00)

"My son, Wyatt Sawyer, was born December 22, 1998." by Amy (1/6/00)

"Georgia was to be our fourth child and last." by Kylie (1/10/00)

This story describes the many relationships that are influenced by a baby-to-be and by his loss. It also is a beautiful tribute at how quickly we bond and how deeply we feel about our pregnancy and our baby. We grieve our baby because we love our baby.

Taylor Ryan Kivisto

We had no plans of having another child. We had 4 children ranging from 2-20. A perfect family yet we longed for another child.

Our two year old had gone through open heart surgery, and we were very afraid to ever take the chance of another problem. Lord knows we had been lucky so far.

My husband had gone for a vasectomy. Tests later showed this failed. He went to a specialist this time and had it done again. Once again this failed. He went a 3rd. time, and they said they would have to do exploritory surgery this time. Due to our little boy being sick at the time ~ suggested we wait awhile.,/P>

We got pregnant. We were terribly worried. As our small town learned of #5 coming to us, my husband was kidded by friends and doctors. Being called "Superman" and "The Bionic man" it was a fun exciting pregnancy. Everyone was excited for us.

But the fear we felt never passed. Now I wonder if somehow we knew that we would not get to keep our precous son. We asked for every test there was. They suggested a level 2 ultrasound but never did set us up with one.

We had an amnio that came back "normal XY" BOY! We then relaxed a little and began to bond. We were having a baby. Our children went to the library & chose "name your baby" books, and we poured over them for months. Taylor Ryan was the name we ALL loved. It fit our little guy.

I had a previous c-section and opted for this again. The DRs. were not agreeable, but eventualy decided they would do this and tie my tubes also. However they were not very nice about it. I was very stressed and had been told that I could be causing my child undo harm. I was afraid that if I had natural childbirth~ I would loose my child.

I had terrible deliveries in the past and very large babies. I remember telling my sister-in-law the night before we went to the hospital (she's an RN- and had herself opted for a section 10 yrs. prior)that "If anything happens to this baby~ I'll never forgive myself".

I was so very scared. I had been told that since our son had a VSD closure at 14 mos. we had a 1% chance of THIS occuring again. I had the lab techs. check the heart very closely. "He's perfect!"

We drove to the hospital early the morning of 4/10/97... it was a beautiful morning in Alaska. The sun was shining and the sky was blue. I could see the hospital our son would be born in as we drove over the bridge. I remember being scared of it all and as we got to the highest point~ praying that God help us get through the day safely. I felt confident that he was with us.

Once in the hospital, they prepped me for surgery~ Taylor had one last bout of the hic-cups. We all laughed!

The anesthesiologist remarked how we'd not have a problem (I had commented on my fears) because she and I shared the same name! "It's a good sign" she said. She kept assuring me that the Dr. was going a bit too far with his warnings about respiratory problems. She gave me the spinal and said "Mosquito bite bordering on bumble bee" - not a problem we were set to go! I was so lucky.

All 4 of my children were there at their aunts waiting (we had to travel 12 hrs. away from home) my husband was beside me. God was beside me.

At 8:20AM I heard someone say "We see a face"! And then I heard him cry! They lifted him over the sheet for me to see him. He seemed little to me. I had been so worried I said "Just let me see his chest" It was perfect (our other sons was shaped different from his enlarged heart)and he was so healthy.

They told me "He's perfect just look at him"! My husband and I hugged/held each other and cried. I thanked God aloud over & over while I cried for blessing us with this beautiful child!

They took him away to clean him up. My husband brought him wrapped in a blue blanket for me to see. He was crying so loud and I commented on how his cry was so much stronger than our older sons had been.

Kurt laid Taylor's head close to mine and I touched his little cheek. I said "It's okay baby Taylor mommy's here- you're alright- mommy loves you" the hospital staff was awed by the way he calmed hearing my voice.I planted a kiss on his lips! He stopped crying and seemed so content.

They finished my surgery and took me to recovery. I don't know how much time elapsed. They moved me into another recovery room- I call this one a closet. As it was crowded with storage shelves etc.

I begged them at one point to go see how he was as he was having respiratory problems. They thought he had a "plug" of mucus. The anesthesiologist went to check and came back soon "Was that a sixth sense or what"? she asked.

I didn't understand so she explained that they were getting ready to page her to intubate my baby. She also said they feared he too had a heart defect. I laid in "the closet" for what seemed to be hours.

I prayed aloud~ and I only stopped to call a pastor, my sister & best friend. I begged God, if not for me~ then for my children to please help keep this child alive. I never asked him to take my life as at the time I felt my other children would need me still. Now I wonder.

At one point I was so consumed in God's faith that I saw my two youngest boys playing on a beach that we like to go too. They were both they would be next summer. They had shorts and no shirts~ they both had matching "zippers" on their chests. It wasn't to be.

Taylor was airlifted to Seattle's Childrens Hospital where I felt confident that he was in the very best hands. Dr. Lupinetti and God's. He had saved Timmy's life and would do the same for Taylor. Never did I ever think he'd not come home.

Kurt had to stay with the other kids, I had just had surgery, but they assured us this was correctable so Kurt would leave in the AM, myself as soon as they let me.

Kurts sister an RN flew with Taylor. They didn't get him to Seattle until 8:30PM and he had two cardiac arrests in route. When the tests were complete they found he had Transposition of The Great Vessles of the heart (TGA).

He was too unstable for the surgery needed to correct it. (They needed to make a hole- in the very place they closed a hole in his brothers heart.) This would hold him until he was older and could have the switch.

His Auntie Jeannine held and loved him until he died at 12:16 AM Seattle time. She did a wonderful job I've been told. She rocked and loved him through the night. Everything I would have done...but oh~ I wish it could have been me!

I'll always be grateful to her, and hold her in a very special place in my heart~ but I wish it was me! I never got to hold him.

I flew home 4 days later so empty. Empty arms, heart and home. Empty to the core We went to the church that night and I held my son. My husband took my glider rocker to the church and I rocked him for an hour and 20 minutes!

We buried our beautiful boy on his due date April 16,1997. He was wearing the sweater, hat & booties I had made for him. They are light blue with fluffy white lambs on them. Little lamb faces on the toes! My mom had always called babies "precious little lambs"...we buried him on top of my mom(and dad).

And his marker will say "Our precious little lamb" on it. With his photo, and a lamb laying in a bed of flowers.

Taylor was my every dream. He was everything I had prayed for! He looked so much like his daddy and brother Tim. How I'd wanted this last child.

I miss him more than I could have ever imagined. A piece of me died with my son.

This is Taylor's story. My hope is that he knows somehow that his family loved/loves him with every inch of our hearts and soul.

He was wanted before he was conceived and with all the fear and and stress...he was wanted and forever loved. He'll always be with us in all we do or say~ our lives will never be as they were.

(See Sharon's loving poem about Taylor Ryan, "Missing You" under Initial Reactions to our Losses, and read Taylor's ten year old sister, Kasey's, loving poem in memory of her baby brother on Sibling's Grief/"Taylor"

Sharon's note to SHARE Atlanta:

Dear Marcia, I just read "My Story" on your board and cried all over again. It was a face to face meeting with reality. So many people act as though Taylor did not exist.

Thank you so much for this special tribute to our son Taylor. It is wonderful to share our feelings.

I'd never want another to go through this heartache, but it does bring some sense of being, knowing that I'm NOT alone in this. Thank you for all the support... I live for my SHARE newsletters and this computer now :-) Love, Sharon Kivisto

Taylor Ryan Kivisto
4/10/97 - 4/11/97
Died soon after birth
Transposition of The Great Vessles of the heart (TGA)
Seattle, Washington
Seattle...airlifted from Alaska

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

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Your Baby is Sick

"Your baby is sick" - the four words that will stick with me until the day I die.

My pregnancy with Emalee was not planned at all, our son was only a year old, almost to the day when I became pregnant, and we had just bought a new house. The timing could not have been worse, but we figured that this little suprise must have been meant to be.

I had a terrible pregnancy, which was not unusual for me, my pregnancy with Caleb was just as bad, except this time I felt something was wrong, and I had never felt that way with Caleb.

Finally at 38 at weeks the drs said that my baby, a baby girl named by her Daddy, Emalee Hope, could be born.

Imagine my excitement, I had only been in labor 8 times before that and on complete bed rest since my 29th week. After 8 useless hours of labor, I had a c-section,and my 5lb5ounce baby was born.

She was perfect, and looked just like her brother, big blue eyes, and very little blond hair. Emalee had one distinguishing feature, her big feet. They looked so out of proportion compared to her little frame, but we figured that she would grow into them. She was just beautiful.

My husband and I got to take Emalee back to the recovery room with us and my Mother even got to come in and hold her.

That was just the start of what I thought would be the most wonderful days to come in my life, but I could not have been more wrong. The nurse came in and took Emalee from us so that she could go and get her bath, and I could go to my room.

An hour later, when my husband went down to bring her back to my room she was on oxygen, and she never came off of it.

At first they though that her lung had collapsed, and then they realized that her heart looked enlarged on the x-ray.

She was immediatly shipped to another hospital, one that was equiped to deal with this kind of thing. I went the next morning to be with her.

Three days later she had open heart surgery to correct Transpostion of the Great Vessels, and about 5 hours after her surgery ended, she was gone.

I still can not belive it. But I have to be grateful, Jim and I had three wonderful days with our little angel, three days that I would not trade for anything in the world.

It still amazes me that nine months have gone by and I am still for the most part sane.

In the beginning I never thought I would make it through this, and the fact that everyone was telling me how good I was doing didn't help at all. If I had to hear how well I was dealing with everything one more time, I think that I would have killed someone. I know they were trying to be nice, but the problem was that I wasn't dealing with it, in fact I was pretending that it did not happen.

Right after Emalee's funeral Jim and I packed a few things and the three of us went away, like if I could get away from the pain it had not really happened. But, when we came home it was still there and larger than life. I'll never forget the feeling of dread I had when I walked in the house and realized that that was it, Emalee was really gone.

I just want the world to know that my little girl existed, that she was here, and for those three days a baby could not have been loved more than she was. She had such an impact on my life, and I will always be grateful for that.

Garth Brooks has a song called "The Dance" and there is a line that says "I'm glad I didn't know the way it all would end, the way it all would go. Our lives are better left in chance, I could have missed the pain, but I'd have to miss the dance." And its true, I would not have given back any of the pain if I would have had to miss spending those three days with the most amazing and brave person to ever come in to my life.

Thank you for letting me share my story and tell you about Emalee. It means a lot knowing that we are not alone in our struggle to survive.

(See some more of Christy's thoughts about her experience and her daughter, Emalee, under Thoughts on Loss - Feelings down the road...

Emalee Hope Mein
Died soon after birth
of The Great Vessles of the heart (TGA)
Palmyra, NY

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

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My name is Donna and my husband is Danny. We lost our son Joshua on April 2 of this year.

He was diagnosed with an enlarged heart 5 days before he passed away. This was not a genetic cause, but a viral cause. They were not able to say what kind of virus. Endocardial Fibroelastosis was the name given on the autopsy report.

My baby was so beautiful and the picture of health.

It has been difficult dealing with the unknown and that it was sporatic. No preparation!

We have been trying for 3 months now to give Joshua a brother or sister. We receive your newsletter and it has been of great comfort. Thank you.

I am still looking for a parent who's child passed away from the same thing. If you can help in anyway with networking me it would be appreciated greatly.

I have sent poems and a letter I wrote to my son via fax for the newsletter. I hope I will see one in their in the near future.

What would have been Joshua's 1st birthday in coming up Nov. 22 and the holidays. I really don't know how I will get through! Trying mom and scared,


Endocardial Fibroelastosis
E-mail at job address
E-mail at home address
New York, NY

Dear Donna,

Here is your experience - hopefully others will find support by writing you. Your loving dedication is on our Memorial Garden Page.

Please be gentle with yourself as you approach Joshua's birthday and then the holidays. Be sure to read what I wrote under the Anniversary, etc. information plus the "Sharing Your Stories" entries. Don't be afraid to do things differently during the holidays, if you need to - to get through all of it. I had to and so have a large number of our members. It's okay to be different. ...Marcia

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

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Naming your baby and using your baby's name is okay. Our babies will always be a part of our families!

My son, Joshua Wayne was born on May 1, 1997. Little did we know at the time, but Josh was born with a (usually fatal) heart condition called Hypoplastic Left Heart Syndrome.

It's been a little over four months now and we are just beginning to feel a little bit alive again. I, myself am at a point where I'd like to at least be able to mention his name without being given a funny look and then dead silence.

Sometimes it feels like they are thinking "I know you had a son, but you're not allowed to talk about him, he's not alive". It's not fair. It hurts very much.

I know we have a long way to go. Could use some support.

Joshua Wayne
May 1, 1997
Hypoplastic Left Heart Syndrome

We at SHARE know how important it is to be able to talk about your son and to use his name. Please consider putting his name on our memorial page.

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

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From God's Hand to Ours and back to His...

This was my seventh pregnancy with only one child being born.

Every pregnancy of mine had been accompanied by severe nausea and vomiting until the fourth month. I swore this would be my last pregnancy ever. It was long and difficult and, often, I resented being pregnant. I wanted the baby but couldn't bear the wait.

Finally, the magical day came. I was pleasantly surprised by how easy the labor was since the birth of my son 8 years earlier had been 28 hours of misery. After 9 hours I delivered my beautiful baby girl, Alison.

From the moment she came out, so silent and limp, I became afraid. She had to be resuscitated but, eventually, she began to cry weakly.

The sound of her voice was so precious and beautiful to me. I began to cry from relief that she was alive.

I then became worried because her arms and legs were a bluish color. I was assured sometimes that happened and would correct itself. My daughter was laid in my arms and I tried to nurse her. She attempted to make the effort but let go as soon as she attached. She opened her eyes and looked at me briefly and I became concerned because her eyes wiggled. I was, once again, assured that was normal for a newborn. I commented on how dark her fingernails were; again, that was normal.

I was extremely sick from my epidural and was given phenergan which made me sleepy.

For the next two hours my husband held our daughter while I slept. I would drift in and out of sleep and each time I awakened I was aware of how quiet and content the two of them were as he held her, studying her face, discovering similarities between the two. I had finally given the love of my life the most precious gift of all; his very own child.

Soon, Alison was taken for her bath. We went to our room and I slept, still. We were told because of having to bag her when she was born, and low blood sugar, they would be keeping our daughter for observation for four hours rather than the usual two.

After I awakened, about 7 hours after her birth, we called the nursery and requested Alison to be brought to our room.

Within five minutes we heard a "code blue" to the well baby nursery over the hospital intercom . My blood ran cold for I knew it was my baby. I begged my husband to go to the nursery to see if it was our baby. Within minutes he was back to reassure me it was not.

He told me the baby it was for was receiving oxygen and the mother was standing outside the nursery, hysterical. I remember trying to imagine how she must be feeling and ever so grateful it was not our baby. However, the uneasy feeling I had since Alison's arrival remained with me.

Within 20 minutes my baby was brought to our room. As the nurse handed her over to me and turned on the overhead lights, she told me she didn't think the baby's color was right and took her back to the nursery where they began giving her oxygen.

It was only later that my husband would tell me, as he followed her out of our room she began running back to the nursery with our baby. That was the beginning of the end. By 2:00 am she was on a ventilator and being transferred to Texas Children's Hospital.

The next day we arrived at TCH,where we were told the full extent of Alison's condition. She had Coartation of the Aortic Arch and a Hypoplastic Mitral Valve which could be corrected by surgery, but the surgery couldn't be done because she was in critical condition from a very rare and often fatal disease called Primary Pulmonary Hypertension.

Over the next five days they tried to stabilize her, unsuccessfully. On the fifth day Alison began to deteriorate. We rushed to the hospital that morning to find her in a different room on a different kind of ventilator. She looked nothing like the little girl we had left the night before. From her neck to her pelvis was distended from either air or internal bleeding, they weren't sure. Her skin was tight and shiny; her eyelids and her lips were purple as was her entire head. Her nail beds were once again dark. Alison's body was beginning to fail her.

They told us they would have to do surgery right away, she was dying. Even with the surgery, she had less than a 10% chance of survival and with a very diminished quality of life if she did.

We asked if one of our options was to remove her from all the IV's and ventilator and let her go to sleep in our arms. We were told it was and we had their full support if that's what we chose. It was.

At 3:00 PM on May 21st, I sat in a rocking chair as they turned off all the IV pumps, disconnected her IV's, turned off all the monitors, and finally, shut off the noisy, vibrating ventilator.

They picked her up and placed her limp, blue body in my arms. My husband and I immediately held her close as I began singing softly in her ear all the songs I had sang to my son for the last eight years. I didn't stop singing or rocking until she took her last labored breath and God held out his arms to greet her. We then bathed our angel and dressed her in a hospital T-shirt, diaper, and pink knitted booties. We wrapped her in a blanket, held her close for a moment, kissed her good-bye and left our little girl behind.

Had I only known what was before us I would have done so many things differently. I would have treasured every waking moment of my pregnancy and never would have been resentful or anxious for it to be over. Rather than sleep during those precious few hours after Alison's birth, I would have recorded every second in my memory forever. I would have taken so many pictures, video taped the entire birth and each moment thereafter. I would have smelled her skin, felt her warm head against my cheek, listened to her breathing, smelled her breath, kissed her face, cuddled her close. I would have done all those things you think you have a lifetime to do with your child. It never occurred to me I wouldn't bring home my baby. I wasted so much precious time.

We've decided to try to have another baby. We know another baby will never take the place of Alison; we are only hoping to ease some of the emptiness with which we've been left. And when I do become pregnant again, I'm going to live each moment of my pregnancy for what it is; a gift from God that is more precious and fragile than anything in this world. And when I have our baby, I'm not going to waste one tiny second of doing all those things that I didn't get to do with my Ali.

And in my life today as it is, I thank God for all I am left with and I live each moment with those I love so that there will be no regrets should God take them, too.

Our hearts are filled with love for you, baby girl.
Someday, we will hold you close in our arms again.
Until then, please watch over us and be our Angel.

Mommy, Daddy, and Jacob

Alison Sumner Howard
05/16/98 - 05/21/98
Died soon after birth/Primary Pulmonary Hypertension
Coartation of the Aortic Arch and a Hypoplastic Mitral Valve
Houston, Tx

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

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Our story-Tracy and Donna

Hello. I will just go into our story briefly. We have lost five babies in the last three years. Three of them were early miscarriages April 95, Dec.96 and June 97.

We lost our daughter, Alivia, at twenty weeks to an unknown reason- she was an intrautering death and I was induced. It was a horrible experience made worse by inexperienced people at the hospital.

Our recent loss is my son, Seth. He was born on May 8th, term and no complications during the pregnancy, labor or delivery other than I delivery much too fast. Seth was born a blue baby and was taken quickly for oxygen. All was thought to be ok- until a heart murmur was heard when he was 24 hours old.

The cardiologist was called in, a echo was done on his heart and we were told that our son had an inoperable hypoplastic left heart, with complications and pneumonia, poor kidneys, and his liver was not functioning well- due to the lack of oxygen in his blood. We took our son home on Mother's day.

All we could do was to love him and try to give him a normal comfortable last few days. We loved him, sang to him, and took a lot of photos including family photos.

Seth started having labored breathing on the 13th- Wednesday night, and basically slept the whole night as we rocked ,sang and talked to him all night. In the morning he woke up for his brothers and sister to say goodbye. They all held him a last time and talked to him. As I rocked him during his last moments, he looked up at me, right in my eyes, smiled the most beautiful smile, closed his eyes and took his last breath. We all cried and held him spending a last moment with him. We took him to the funeral home ourselves.

On Sunday the 17th we had his viewing. I went before hand and dresses Seth, held him a last time, and layed him in his heavenly "crib".

We held a memorial service on Monday the 18th and the graveside service followed at the cemetery. It had been raining for days, but at the cemetery, just before the service and all the way through, the sun came out, a sweet breeze blew and we all said goodbye.

So we have been through a little of everything in the past few years. I hope we will be able to help others through anyway we can.

Seth Adam Posey
Died soon after birth/hypoplastic left heart
Mt.Home, Idaho

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

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My name is Ellen and I loss my week old son Andrew on May 22nd. I had a great pregnancy.

It was not until two hours after Andrew was born that we found out he had d-transposition. Andrew went through 12 hours of surgery and did not survive.

I have been reading books but have not come across stories related to my situation. If anyone can relate to my story I will be happy to hear from you. Thank you

Johnston, RI
1 Week..d-transposition

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

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Precious Angel

My little boy Colton was born July 30th, 1998. That was one of the most wonderful days of my life. Everything had gone perfect with my pregnancy. The sonogram showed that our little boy was fine.

But, when I look back on certain instances now I feel that I somehow new something would be wrong.

Everyone at my work was having babies, and with each new email of a healthy baby, I somehow felt haunted. I can't explain it, I just know how I felt.

After Colton was born, my husband was holding him and he was breathing through his mouth. I kept asking why he was doing that but nobody answered me.

Then when I held him I noticed his finger nails were a dark pinkish color. Later after I nursed him and the nurses took him to clean him up, I found my answer. Colton had a very loud heart murmur.

I felt like a black hole had engulfed me. He was so perfect how could this be?

They were going to take him for observation until the morning. About an hour later they came back with a cardioligst, which they called in at three a.m.

Nobody would look me in the eye. They told us the awful news. Colton had no pulmonary artery opening. They were keeping his PDA open with Prostoglandins. He also had what appeared to be a hole in his heart between the left and right ventricle. He was being taken to Children's Mercy Hospital right away.

I somehow seemed to survive through the next 4 days until his surgery. Spending time with him, feeding him, changing his diapers. He seemed to sleep most of the time and never opened his eyes.

I kept asking why he didn't open his eyes. The medicine he was on made him sleepy and his eyes were a little swollen, was my answer. I just wanted to see his eyes, I don't know why that was so important to me, but it was.

The day of his surgery they wheeled him off after the family had a chance to kiss him and tell him they loved him.

They were going to put a tube in his heart to replace the pulmonary artery and close the septal defect. The nurses came in and gave us the updates on the surgery, everything was going good. Then they brought in a doctor, apparantly Colton only had one ventricle, his left ventricle and the planned surgery couldn't be done.

I just broke down. I had been trying to be so brave up to this point, and I couldn't do it anymore. My husband was consoling me while the doctor explained what they were to do.


They would put a shunt in, then through two more surgeries he would have a fontan shunt done. After that he should be fully oxygenated. Colton had to be put on a pacemaker, because of his special heart the doctor had given him heartblock.

He barely made it through the first night after surgery. Then he soared. His atriums began to beat on their own, but not the ventricle, he would have to have a pacemaker for the rest of his life. He was taken off of all of the IV drips except for one. He was down to room air. They were feeding him my breastmilk. The surgery nurse told us that they beleived Colton had made it over the hump. He would be fine.

Oh, he was such a fighter. Sunday, the last day he was with us, Colton was awake and fiesty. His hands were restrained so he wouldn't pull out any important tubes, and I finally saw his eyes. We sat together, me holding his hands and cupping one hand over his eyes. It seemed that the bright light bothered him. I must have sat looking into his eyes for almost two hours. The nurse kept saying that he was too awake and she gave him two shots to sedate him. Still he looked into my eyes, listened to me tell him how much I loved him. Then after the third dose of tranquilizers and pain killers, he drifted off to sleep. I really feel that Colton and God somehow new this was so important to me.

I left the hospital for my first night home with my husband and daughter. For some odd reason I did not want to leave, but everything was to be okay, and my daughter missed me terribly.

We called to check on Colton that evening and were told to get to the hospital ASAP, he had gone into cardiac arrest.

I was in shock, numb, my husband was crying. They called us on the way to the hospital and told us that he did not have a blood pressure. They had to manually pump the blood for him. He was gone when we got there.

We held him and baptized him.

I miss Colton so much. Not a day goes by that I don't think of him. I wish he could be here with me, yet I know he is in a better place, away from the pain he suffered.

I only wish somehow I could have protected him and kept him safe. I will always love my little boy and cannot wait until I can be with him again.

We love you Colton!!

Mommy, Daddy, and Mackenzie

Read the beautiful memorial poem that Colton's aunt wrote: "Cherished Babe" by Victoria L. Ward (10/1/98)

"Shelby Elise Norris...reflections on my pregnancy..." by Chrissy (11/4/99) and and Shelby Arrives 9/17/99!

Colton Michael Norris
Other/congenital heart defect/pulmonary artresia
Kansas City, MO

Marcia's thoughts: I wanted to share with you that in my experience as a group leader for the last 13 years, many moms have "had the feeling" things weren't right(me included...despite everyone, doctors, too, telling me all was fine...). Our fondest wish would be to protect our unborn child and to make everything "right". If we could, we would. As we all learn to understand, we do the best we can and many things are not in our control. We begin to heal as we forgive ourselves for that which we could not control.

Your love for Colton is so did much for him. I have a very clear image of you sitting with your son and protecting his eyes while you shared "his moment". God does provide for us in the most loving ways...

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

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Nacheal Maile

Nacheal Maile was born 8/5/97 and was hypoplastic left heart.

She under went Norwood at 7 days and Glen at 5 months. She had bad spell at 14 months where her little heart could not go on any longer.

In 11/98 she under went a heart transplant at Stanford Hospital in Palo Alto California. She had a rough three months. On 2/28/99 she had a acute rejection and passed away.

Nacheal was truly a gift from God. Everybody that laid eyes on her were touch by her energy and will to live. I'm so proud to have been her mother and I'm blessed that God choose me to receive her. She was only on earth for a bref moment, but left a impression and energy that will live forever.

"I Love You Forever and Ill Like You For Always"
and as long as im living, my baby you'll be........
Nacheal Maile Rowe-Babb "Maile Girl"

Forever In Our Hearts..

Other/ hypoplastic left heart

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

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Baby Grant

My Baby Grant was born on April 8, 1999. He was born weighing 9lbs 3oz and was 22in long. He was a healthy baby boy except his heart was broken.

You see he was born with three severe heart defects. He only lived 29 wonderful days and died in surgery on May 7, 1999.

He is our first born and the love of our lives. Within the short time that he lived he touched hundreds of people.

Over 200 came to visit him at his memorial service and hundreds and hundreds more were praying for our family. We know he had a purpose here. We may never know why he was here for such a short time, but he will be a gift I will always treasure.

Shelli Smith
(Baby Grant's Mommy)

Alabaster, AL

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

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Adam Kenneth Lowe

Soon after our sons death I visited this site often- it is now six months down the track.

It is rough- a rollercoaster of emotions. Finally, the time has come for me to begin to share Adams story. Following is the first entry from my journal, written 3 weeks after Adam died. I hope to share more of our story in the future, but one thing I have learnt whilst travelling down this road called "grief" is that I cannot plan ahead- I take each day, moment by moment, and do what I can, when I here goes..

On the 4 Dec, 1998 my beautiful boy was born. The night before I was nervous and excited- I was going to be a mother. My life was finally going to be where I wanted it after all these years of bizarre happenings and heartache.

I awoke early after only a couple of hours of very broken sleep. I stayed up most of the night talking to ...... in the bed across from me. I had been extremely afraid earlier that evening as she was brought to our room with very low blood pressure and had to have 2 transfusions so that did little to ease my mind as to the impending birth of our son, Adam.

We knew we were having a boy since the 18 week scan. I was so excited- I always thought I had wanted a girl until Adam was put in my arms at 8.11 am on Friday the 4th Dec after a caesarean section performed by supposedly on of the best obstetricians!

Ken waited in another room while they put the epidural in, which was no easy task as at 200lbs it is virtually impossible to touch your chin with your knees and arch your back like a cat! Finally, Ken came in and sat next to me while they began to cut and gave me oxygen " for the baby".

He squeezed my hand really hard just as he had on our wedding day while we were taking our vows. Soon, Ken was kissing me and saying"we did it!" and I watched Adam being pulled out of me- he cried immediately and they took him away for about 30 seconds while they wrapped him up (it felt like half an hour ), but I was ecstatic- we had, in David Pincus' words " a perfect little boy".

When he was placed in my arms the first thing I said was "come on little guy-open your eyes and look at your mum"- little did I know that was a sign of things to come! The doctors began to joke with me saying I was nagging the poor child already.

Too soon Ken was leaving with David Pincus and Adam to weigh him and bath him and take him to the nursery- I have never felt such pride and love as I did when I held Adam in my arms for that brief and oh too short introduction to my son. The love literally overwhelmed me and I felt at peace for the first time in my adult life- I felt like I had finally come home!

Mothers had explained to me the bond and love you feel with your own child but their description paled in comparison to the actual event for me. I quietly thanked God and softly cried overwhelming tears of relief- we had a healthy little boy, or so I thought.

I was wheeled back to my room where Mum and Dad were proudly waiting for me, and they immediately started to fumble over words telling me what big feet he had and my nose and Ken's mouth and how beautiful he was, just as I was when I was born.

Ken then came across from the nursery and told me they had Adam under a heat lamp and a little oxygen, but they would bring him to me soon- not soon enough for me but I figured we had the rest of our lives together. How blissfully ignorant I was of things to come.

These first couple of hours were the only time I felt like most new mothers do; excited, overwhelmed with love and natural maternal instinct for this new life- my son. I knew then and there that I would die for him without hesitation; I now understood there isn't a feeling in the world to match a mothers love.

I anxiously waited , I don't know how long, for my little man to be brought in for his first feed and for me to take a really good look at him; fingers, toes, penis, legs, bottom- the works! But it was never to be.

As I write this I have mixed emotions. Our beautiful boy was diagnosed with Hypoplastic Left Heart a rare condition that could not be treated. Our darling died at 6 days of age, 30 seconds after he was taken off the ventilator.

I am not ready to give full details of those 6 days now...maybe later.

At the thought of my Adam that same overwhelming protective love is mingled with indescribable grief so intense I feel like I am not breathing but just occasionally coming up for air.

Surely I cannot shed another tear today but they come again out of nowhere for my beautiful son who I will not see again until the day I die, if I am blessed with that joy that will be the day that I will truly go home again, for without him I will never be whole.

It isn't fair, natural, or right that I must write this in my office only feet away from Adam's empty nursery. How can life be so cruel to give us a gift such as Adam for such a brief time and then to take him away? I don't think I will ever have the answer.

Adam Kenneth Lowe
Dec 9, 1998
Died soon after birth/Hypoplastic Left Heart
Gold Coast, Queensland Australia

Marcia's thoughts: Your feelings of being a Mom are very clearly expressed in this writing. The love that was there from his mother and father and grandparents is strong. I know that other parents will identify with your thoughts. Thank you for sharing them...

There are many questions and uncertainties that losing our baby causes us to form. There is, as you have suggested, a long path to survive. As we share our story and read other stories we realize that we are not alone and that others have survived this great pain..each differently and on their own unique path. I am continually touched by the outreach on this site and the support that we share with one we piece together who we will be in the memory of our child.

Entry #2: I just read my story in the section on babys dying of heart defects- how far I have come in the last 6 months. I found one of the best things I did was write a letter to my son- I can't believe how much this helped and I would really like to add it to the "letters to our babies' section- thanks for the support. Tracey

"My Darling Adam" by Tracey (12/24/99)

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

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11 Days with Kapono

Kapono was our third child. After 6 years since my son was born my husband and I wanted another baby. My pregnancy with Kapono came after having a miscarriage 4 months prior.

My pregnancy went well, I felt great, I had comments on how I glowed, my weight gain was doing good, the routine tests the doctor did seemed to give no indication that Kapono was not going to be just the perfect blessing we had prayed for.

At 37 weeks, my doctor had me do a sonogram, it was then we found out we were having another son! We were so excited, I had a big hunch that the baby was going to be a boy, I set up his nursery with blue long before knowing he was a boy! I was just so sure.

Well the sonogram confirmed it once and for all. There was no indication he had any problems. His size looked fine and the technician did not see any signs we would have to be concerned about!

At 38 weeks I started having contractions. I had contractions all day and knew the day had arrived. The contractions were as close as 5 minutes apart and lasting a good minute to minute and a half. We decided to call the doctor. Although the contractions were not painful, it was happening! We were so fired up!!!

I grabbed my bag as well as baby's bag and we were off to the hospital, it was almost 2:30 a.m. At the hospital the contractions were coming but still I felt okay, I knew the baby would be coming fast, my 2 children I delivered less than 5 hours so I knew he'd be here soon!

Sure enough! At 6:33 a.m. on Sunday October 17, 1999 my son Kapono Gideon John Kamoku was born. He was 7lbs. 1 oz. and 20 inches long.

At first when he came out and was put on my stomach, he did look extra purple, but I had no reason to worry, Or did I? The doctor congragulated me and my husband and said "Good job Shelby, you have a healthy baby boy."

The nurse took him from me and the doctor started to clean me up and the nurse called him over, I began to worry. He came back and told me the nurse heard a heart murmur.

Then again the nurse called him over to the warmer and they talked and the nurse took him to the nursery. The doctor talked calmly to me and said Kapono was being taken to the nursery to be monitored, but we did not have to worry. I still felt uneasy and worried, I sent my husband to call my pastor and they said a prayer immediately over the phone!

I was settled in my bed and just by looking at the nurses, I could see such pity on their faces they looked at me like "Oh you poor thing" I in return had no reason to worry, so I just prayed to God that my child would be okay.

Finally after 2 hours of waiting I sent my husband to the nursery to check on my baby, the doctors were doing x-rays on him because his color was not right and they were concerned on his condition.

This is the beginning of the realization hitting me that my baby was really sick. When my husband returned he had such a straight face and he tried to smile as he hugged me and said it would be okay.

A nurse then came in to let us know Kapono was going to be intubated and needed to be flown to the island of Oahu to Kapiolani Women's and Children's center.

I was frantic!!! This was not part of the plan! This is not what I was prepared for! I seriously thought I was having a BAD DREAM!!! Then my husband calmly spoke and told me "Shelby, the best baby doctors are at Kapiolani"

At 10:30 a.m. the nurse finally told me Kapono was stable but still on the shaky side, and if I wanted to I could go visit him. I jumped out of my bed and I refused the wheelchair, I just had a longing to be next to my precious baby. The nurse could not believe the strength I put out, but wouldn't any mother?

It was so hard to see my precious son intubated and with all sorts of tubes in him. He had IVs in both heels and an arm.

I whispered in his ear and he slowly squeezed my hand. I just wanted to take him back in my room and hold him and nurse him like all moms do after giving birth! That was'nt going to happen though.

My parents and grandparents came to visit him, my older 2 children stayed home with a relative and they were told to stay home and pray because baby was sick. I kept talking to him and telling him I loved him and that he was so handsome! He did not open his eyes for me.

At 1:30 p.m. Kapono was flown from Hilo to Honolulu. The doctor let me out at 5:30 p.m. that same day with the agreement that I would stay home that one night and fly to Honolulu the next morning. I did.

On Monday, the doctors in Honolulu called me to get an okay to have tests done on Kapono, this special test was a cardiograph. I okay'd it and at that time the doctor told me that the x rays taken showed Kapono had what was called Hypoplastic left ventricle.

I just kept saying to myself "This cannot be happenning!" But it was...

We made it to Honolulu and to the hospital and when we got to the neo-natal unit we were amazed by the amount of babies that were there. We walked up to Kapono's little bed and he still had all his IVs in.

The doctors came to talk to us about the options we had with Kapono. He needed to have surgery, they were trying to control his blood sugar first, and the surgeon who would be the best to do the job was leaving town in 2 days. The doctors would not operate until he got a little more stable.

We prayed and prayed for guidance, we sat next to his bed and we talked to him. He knew we were there because when we would talk he would try to move, and the nurses would have to sedate him so that his heart would not beat too fast.

He was such a cutie! He opened his eyes and looked at me and I knew he was fighting.

On Wednesday the cardiologist approached us in the Hospital cafeteria and asked if we wanted the surgery done that night, the surgeon could operate on Kapono right before his flight, but we needed to decide then! We said go for it and Kapono made it through the 3 hour operation. A shunt was placed in his heart to work kind of like the valve Kapono's heart was missing.

The shunt was working and we just needed to monitor his progress. The day after surgery was a rough day, the doctors were having a hard time keeping his blood presure up. They were loading him up with fluids and he began to get swollen. The doctors said that would happen due to the large amounts of fluid they were giving him and from the surgery as well. His skin was glassy looking and he was just so puffy.

On Friday, he looked like he was making progress, his blood pressure was okay and the doctors were a little relieved.

My parents flew up to spend the weekend in Honolulu with Kapono. My husband flew back to Hilo for the day to pick up my 2 older children to come see their baby brother. It was wonderful!

When my parents would talk to Kapono, he would move his toes and squeeze his fist, then the nurse would have to sedate him so he would'nt be too active.

When my children got to the hospital and saw Kapono, I knew they wanted to cry, seeing all those medicine being pumped in to him made them scared. Kapono loved it, I knew he was being strong and showed progress because they were there with him. My daughter read Dr. Seuss books and my son drew pictures to hang by Kapono's bed, it was such a great time. Kapono would open his eyes wide when he saw his older sister and brother, I cried because I knew he recognized them!

That weekend was the best progress Kapono had. The next week was dealt with keeping his blood pressure up again. The doctors could not understand why the medication was not helping.

By this time he was 10 days old and he weighed 12lbs! He was just so swollen I felt so sad for him to be like that.

All through this time I could not even hold him. It was killing me that I had not held him yet.

It was on a Wednesday, that an x-ray was done and they found a little hole in his intestines, it was a good sized hole and in an area that the doctors did not want it to be. It was then explained to us that all the time through surgery and recovery, Kapono's body was undergoing stress, this stress led to a cist in his intestines which led to a hole which was causing air to go in to his stomach and which was turning in to an infection.

The neonatologist said we could do surgery if we wished, but Kapono was really weak. We wanted to try and after talking to the surgeon we knew Kapono's recovery was in God's hands. The surgeon said he was just too weak and she did not want to do the surgery, she did'nt think he'd make it.

We called our family in Hilo that day and decided that we'd take him off all medication and the ventilator. Some of our families flew to Honolulu to support us. The neonatologists cried with us and were just great!

When we removed the ventilator and the IVs, Kapono was still breathing.

The nurse handed him over to me and for the first time since his birth I got to carry my son! We dressed him in a hospital shirt and wrapped him snuggly and put a hat and booties on him and I held him close to me, He was weak and he did not open his eyes but I loved him all I could. I talked to him and rocked him. It felt so good!

He got passed around to our family members to hold him and when I got him back, the nurse checked for his heart beat and he still was with us. We took pictures and I kissed him. He was with us for 45 minutes before his heart stopped. The day he went home to be with the Lord was October 28, 1999.

After Kapono passed away, we made his arrangements and we had a funeral service for him. Attached is the poem my 8 year old daughter wrote and read during the service.

At the service over 200 people attended, my pastor did an altar call for people who did not know Jesus to accept him in their hearts. Praise the Lord, some relatives I have that did not know Jesus got born again. Kapono was such a blessing to those who allowed him to be.

My husband has a few relatives that act as if Kapono never existed! That hurts so much, they never called us and they did not come to the funeral, they speak highly of my sister in-laws 6 month old daughter in front of us and act like we never went through what we did.

If anything at all, I'd just like people to realize how special these babies are. I just don't like it when people assume to just forget, when instead the best thing to do is distinctively remember!!!For memories are all some of us families have.

"Kapono's Poem by: Big sister Kaori, eight years old" by Kaori (12/24/99)

Kapono Gideon John Kamoku
Died soon after birth/ Hypoplastic left ventricle
Hilo, HI

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

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My Daugther Georgia was born on 6th April 1999. She later died at 23 days old on 29th April 1999 after complications after open heart surgery.

The loss of our Daugther due to a heart defect has left us very nervous about the birth of our new baby in March 2000. Although we have had tests done to find any abnormalities it does not take away the fear that maybe it will happen again. Here's hoping that all is well.

Brisbane, QLD Australia

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

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My son, Wyatt Sawyer, was born December 22, 1998. He was born with a heart defect called Coarctation of the aorta.

He had heart surgery when he was one week old and passed away from pulmonary thrombosis when he was two and a half weeks old.

His Anniversary date is in two days. I miss him so much. I want all to know that my heart breaks for everyone of us and I pray that we all can find peace.


Marcia's Comments: Please read about ways to cope with anniversaries under "Holidays, Anniversaries and Due Dates.

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

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Georgia was to be our fourth child and last.

The pregnancy was fine execpt all the false labours until she arrived in such a hurry.

We were so happy that we had another little girl to love but the problem was she was blue. We panicked as all parents do but the doctors said it would be ok.

Georgia spent four days in the special care nursery with suspected wet lungs and sepsis. We were glad when she was released into the ward with me.

The next day at five days old Georgia was allowed to come home, the other kids had put up welcome home signs for us. The next couple of days were settle in days then we went shopping when Georgia was seven days old. That was the last time she saw the outside world.

Midnight 13 April 1999 we were woken up by Georgia screaming in pain, I changed her only to find purple blotches all over her tiny body.

We made a mad dash to the Hospital to be told that something may be wrong with her heart. Georgia was transferred to another hospital and it was confirmed that she had Transposition of the Great Arteries, hypoplastic aortic coarcation, patent ductus arteiosis, muscular VSD and a small patent foramel and ovale. At the time we didn't understand any of this only that Georgia had major Heart problems that required surgery.

On 16 April 1999 Georgia had her surgery with one of the best surgeons in the country doing it. We almost lost her that night as they could not get her off the by-pass machine, our prays were answered when they told us she was back in ICU.

Georgia's recovery was slowly improving day by day and our hope's were finally coming back but then the doctors told us our final nightmare. Georgia had contracted a virus called Candida. They did blood transfusions of platlets and gave her antibiotics but in the end she just was not strong enough to pull through.

On 29 April 1999 just 23 days after Georgia's birth we lost our little girl to the angels.

Just her Dad and Mum were with her just like when she was born. A small tear came from her eye before she left us.

We visit her at the crematorium monthly and now her little brother or sister is on the way. I asked her to look out for our new arrival and see him/her safe into this world. Nothing can take Georgia's place or her memory from us.

I have spent the last nine months finding out everything I could about Georgia's condition and what could have been done to find the problem when she was first born. I am taking legal action against the hospital she was born at as they should have found my daughter's Heart condition while she was in their care.

Georgia's death has given all of us stength and courage and we will not lose that ever.

Georgia Sylvarna Henriette Nielsen
Brisbane, QLD Australia

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

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