SHARE Atlanta Pregnancy and Newborn Loss Grief Support My*Our Experiences

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"Sharing" Our Stories/Thoughts - Along this Path

Midterm Losses due to congenital problems...Entries 1997-'99

Remembering our babies -

Letters and Poems

"Emily's Story" by Michelle (2/98) and (7/01)

"Caylie Nicole Lindsey" by Kim (5/98)

"Garion" by Marissa (9/11/98)

"Our Sweet Tommy" by Kim (9/16/98)

"Losing A Son" by Lisa (6/12/99)

"...sharing with someone in similar circumstances would be great..." by Sue (6/12/99)

"Goodbye Pascal" by Elana (6/16/99)

"Rose ~ 17 March 1998" by Rose (8/6/99)

Michelle's story describes grief -
...the panic, the shock, sadness and confusion that we experience at the time of learning about our baby. She also writes of how important those around us are at this time.

For those of us, me included, who have lost a baby due to a obvious physical condition, I feel blessed by the words that Michelle loving shares Emily. So often, I have reassured nurses that our babies are beautiful - they are ours to be loved, held and remembered. (Marcia)


Emily's Story
written by Michelle G 2.9.1995

It was Thursday 24th August, and I was due for the usual eighteen week ultrasound scan. I wasn't at all concerned. I had no inkling that something could be wrong.

As per usual, with an ultrasound you have to drink a huge amount of liquid, and your bladder doesn't agree so I was absolutely busting to go to the toilet. I was only waiting 5 minutes until the specialist appeared, so I was very relieved he wasn't running late.

In the meantime, I was very excited with the fact I was soon to see my baby on the small screen and would be able to see her move and have a scanned photograph to show the other children. We were so looking forward to the arrival of our new baby. The specialist came and said go into the toilet and let the excess go just a little. I don't think they've ever had to drink that much and let a little go because once you start you feel like never stopping.

I laid on the couch and waited patiently because as usual the Dr didn't speak much. Those guys never do, he didn't have my doctor's bedside manner. As he scanned her little legs he typed information into his machine so at this stage I wasn't at all worried. I just relaxed and continued to look at the screen.

After about ten minutes of him scanning the one place over and over, I was starting to get very worried as he wasn't typing any information in and had a very worried look on his face. After a little while he looked at me, put his hand on mine and said I'm sorry, I'm very sorry it looks bad, very bad, and that's all he would say.

I asked him over and over what was the problem, but he just said he couldn't say and he would speak to my doctor. Minutes later he reappeared to repeat what he'd already told me in his office, and that I would be able to speak to my doctor tomorrow at 10.00 am and just said - Sorry.

I left the hospital crying all the way and arrived at my Mums in hysterics and xplained what had happened. She rang the surgery to find out what the problem was but my doctor said it wasn't something that could be explained properly over the phone as he needed to see me in person. That night was an absolute hell.

Andy was night shift, and I just didn't want to be alone so I stayed the night at Mums. Of course I didn't get any sleep that night. I just laid there wondering if she was OK or if there was something wrong with me or if she was dead or alive.

Friday 25th August

Ten o'clock seemed to take forever to come around, but I was not at all prepared for what I was about to be told. He asked me if I knew what an Anencephalic Baby was. I said no I didn't, and he went on to explain. It was one of those situation that you think will never happen to you.

I had to decide what to do, whether to terminate now or go full term. The outcome would be the same no matter what. She would die when she was born. The decision was easy one way but very difficult in many others.

I knew it was the best thing for Emily, but in a way I wanted to be selfish and have her for me. I wanted her so much, my precious little baby. At this stage we didn't know whether she was a boy or a girl. We discussed her for about one hour and the decisions that had to be made, he said that he didn't want me to decide right away, to talk it over with Andy and come back at 4.00 PM.

When I arrived home to explain to Andy I just cried and cried. This was one of the worst days of my life. All my dreams and expectations were shattered. It didn't take long to decide. At 4.00 PM we arrived at the surgery and talked about her for ages.

We both had a million and one questions. My doctor answered them all as best he could. I think Andy doubted the ultrasound results at first, but after seeing it himself on an ultrasound he was convinced. We had decided the sooner the better so we arranged for the induction of labour to begin at 8.00 PM Sunday.

Sunday the 27th August

We were told it would take longer than usual because 'your body just isn't ready for labour. I was so scared. I didn't want this happen at all . These things just don't happen to me or people I know was the thought anyway. It always happens to someone else.

At eight my doctor arrived and started things on its way. The epidural was the most painful thing I ever felt and being terrified probably didn't help. He also had to put up a drip and a catheter inside the vagina into the cervix which has a balloon to dilate the cervix. After everything was done all I could do was wait. Andy stayed by my side the whole time and that meant more to me than words can ever say. It was his support that pulled me through, I just know I'll never be able to thank him enough in an entire lifetime for that.

Monday 28th August

Mum came to the hospital at about nine am and stayed with me also until the end. At 10.30 am my waters broke, and that frightened me so much. All of a sudden it was very very real and there was no turning back. Things started to progress, and I started to get contractions.

Roz came in with top ups for my epidural every hour. I started losing blood and a lot of it. Close to the end I was getting extremely weak and still losing heaps of blood. I was floating in and out of it, and then they gave me oxygen which didn't seem to help. I really appreciated Jodie and Auntie Judy being there for me as well.

Then they decided to take me off to theatre. Andy looked so scared and didn't want to come in with me which was fine. Once inside theatre I remember feeling much more with it. Everyone in there was wonderful and I didn't feel so terrified. The anethethist gave anaesthetic and asked me did I want to be wide awake or drift in and out of sleep I said I didn't care just let this nightmare be over.

I remember thinking this was just like E.R. Apparently after about one hour I woke to see all these people standing around a table in green. The sister came to me and told me that I had a little girl. I had imagined she would have been bigger. I got to hold her and she was just so perfect. I remember thinking she looked asleep.

When I got back to my room everyone was there. I just looked and touched her for about 2 hours. I remember thinking she was just like the other children. A bit of everyone. All the people at the birth were there to see her. She was just so beautiful.. A real little princess. We named her Emily Shenae G. She was born on Monday 28th August at 3.00 PM and weighed 130 grams and was 20 cm long. I remember getting the high you get with a baby born alive and healthy. It was really strange, I wasn't really sad like I thought I would be, she was just so beautiful.

The next few days were absolute hell . I was very sick, and I was finding it very hard to deal with my overwhelming grief. I just wanted her back.

Tuesday was difficult as the funeral director came to take her away. I wanted to hang on to her in a way, but I knew she had to leave. . . Tuesday night my doctor came in, and we talked for ages, he told me that my blood count was very low and if it hadn't picked up by morning I'd need a blood transfusion. Once again I was very scared.

Wednesday 30th August

My Doctor came to see me in the morning, and I still couldn't get out of bed. He did another blood test and ten minutes later he had the blood ready to be infused. It felt like ice pumping through my veins. I had three units, and as they were putting in the last unit my vein collapsed which was extremely painful. A shooting pain up my arm and across my chest. Sister Janine had warned me about this. My doctor was called and put another IV in the other arm so I could have the remainder of the blood. It was amazing how much stronger I was on the following day.

Visitors expected me to be better, but I felt like I was on an emotional roller coaster never knowing when I'm going to crack. My visitors were seeing the brave Shell but inside I am falling apart.

Friday 1st September.

Today is Emily's funeral, and I feel all this emotion trapped inside just waiting to come out. My Doctor comes to see me once more before I go home, he has been just wonderful.

Everything came out at the funeral. It was a lovely service, and somehow I feel she is safely in the arms of Dad, I know he is looking after her.

She will always be with me. Nobody knows the pain I feel inside not having her by my side, she was one very special baby, and she will never be forgotten. At the moment I think of her every minute of the day. The pain is like nothing Ive ever experienced and sometimes I feel better than other times, but I can't get her out of my mind for a second.

Visit Special Gifts for more of Michelle's thoughts about Emily and her family - after two years. Also visit Sibling Grief/Alison to read the beautiful and loving poem that Emily's sister, Alison, wrote about her sister.

Emily Shenae Graham
28.8.95/18 weeks
Other /Anencephalic Baby
Collie, W.a. Australia

Entry July 7,'01

"Emily's Story and Website, 6 years Later" by Shelley (7/7/01)

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

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Caylie Nicole Lindsey

Nearly 1 and a half years later I still find it hard to believe that this has happened to me. I had my first child, a son, at 18. Cody was very much wanted and loved by my husband Dave and me. We had been together for 2 years and welcomed him into our hearts with great joy, on November 2, 1986. His brother Cayne followed on July 15, 1988. I loved my boys dearly but had always wanted a girl.

In November of 1995 I discovered I was again pregnant, I was thrilled and so was Dave. But it was not to be and at 8 weeks I quietly and painlessly(physical) lost the baby.

What a new experience this was. I had no trouble conceiving, carrying or delivering my boys. I was very "proud" of my ability to make and deliver into this world, "healthy babies." Now all of a sudden I was brought into sisterhood with women who had lost babies. Not somewhere I had ever expected to be.

Time healed the wound quickly, I had barely known I was pregnant before the baby was gone. I was sad for a while but recovered and though I will always wonder what this baby would have grown to be, I am at peace with this loss.

In October of 1996, I once again discovered I was pregnant. Oh how things change, there was no joy with this revelation...only fear.

I refused to go to the doctor, or to tell anyone...until I got past three months. I had incredible continuous morning/noon/night sickness, but bore it with pride, I was making a baby..I hoped.

In the first week of January 1997, when I had just become comfortable, past the first trimester, and dared to feel joy and make plans for this child, it happened.

I began to bleed, went to the hospital for an ultrasound, when I asked the technician if she could at least tell me if the baby was still alive she said yes, but something in the way she said it caused much more fear than if she had said no.

A meeting with my doctor after the ultrasound revealed to me that though they weren't sure exactly what the problem was, that the baby I was carrying suffered major anomalies...and would not carry to term.

Then came the round of visits to specialist, and the ultrasounds, the questions, the pitying looks. Having to wait at the hospital for the ultrasound in a room full of women who were having babies and were so happy it radiated out from them.

Then seeing our poor baby on the ultrasound screen, most likely a girl they said. They were unsure what the exact problem was, but she definitely suffered a problem where she had no way for fluid to exit her body and as a result was very swollen, she was no longer able to assume the fetal position. Her little tummy was so swollen that her arms and legs could only extend straight out.

But this was not to be the worst to come. They sent us home to await the natural onset of labor, it was that or go to an abortion clinic...which the thought of made me violently ill.

The stress and pressure and fear were tremendous, my husband wanted me to go to the clinic, he feared for my health and safety if I carried the baby further.

I spent 3 days straight calling frantically even to other states to find a hospital that would induce labor so that my daughter could be born naturally, not ripped from my body, and all the while prayed that nature would take its course and I would miscarry.

The irony of it was not lost upon me, I went from praying daily for God to let this baby stay in my body and be born, to praying hourly for God to take this baby from my body so that she would not suffer any longer, nor would we./p>

Eventually I found a doctor and a hospital, and our daughter was born in only 4 hours, there had been a possibility she might be born alive, but was not. At only 16 weeks she was not the pink-skinned little baby one would expect and her suffering had taken its toll on her poor little body.

I did not hold her, but wish now that I would have. I do have a picture of her, not one that you would share with people but when I look at it all I see is the sweet little face of the only little girl I will ever have.

One year later the hurt is better, I can at least function as a living, breathing human being, that was nearly impossible for me to do for the first several months.

Our daughter's autopsy showed Turner's Syndrome, the fluid defect, a defect in her diaphram and her liver.

My boys are nearly 10 and 12 now, and I will not try again for another baby. I have no heart left to give up to such pain and suffering.

I thank God every day for the two healthy, happy children I have and ask him every night to watch over Caylie and hope that someday I will be able to meet and hold and love this child that was taken from me.

Caylie Nicole Lindsey
Second trimester loss/Turner's Syndrome
Bronson, MI

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

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On July 31,1998, I lost my precious son. I had just turned 5 months and I had an appointment for a sonogram. Jerome and I were so excited because the doctor told us we might be able to find out the sex of our baby.

It was on July 26th that all my dreams were shatterd. Instead of the doctor telling me the sex of my baby, he was telling me that my baby had an object in the stomach that may be a tumor.

That's all they said and they scheduled me for an appointment at the University of Washington to do another sonogram that can help find out what was wrong. I did alot of praying before my appointment on July 29. On that day Jerome and I found out that our firt child would not survive.

We were told that our baby had a tumor so big that he would not survive. His spine was not formed correctly at the base and his kidneys were scrunched. The doctor said that if I continued with my pregnancy that our baby would eventually die inside me.

My first baby at age 20. I didn't want my baby to suffer any pain and knowing my baby that was growing inside me was going to die, and there was nothing I could do made us decide to let him go. We wanted to send him back to heaven where he would be perfect.

So the very next day on July 30, I was induced. For a day and a half I was in labor. On July 31 just after noon at 12:40 I gave birth to a baby boy. He weight 6 ounces and fit in the palm of your hand. I prayed for this baby.

I asked GOD to send me a boy for Christmas. Garion was supposed to be here two days before Christmas on December 23. So on July 31 I didn't understand why this was happening. My baby was a boy and due around Christmas. Why did GOD allow this?

When the nurse handed me my tiny baby I had no feeling. I couldn't find any emotion, it was like someone turned off all emotions to my body.

I held my Garion in my arms and hummed a song to him "Baby Mine". I had my family there and Jerome had his. Everyone held Garion and we took a lot of pictures. After a few hours Jerome and I kissed his head and I handed him to the nurse.

It wasn't until that night that I broke down and realized what had happend that day and actually that whole past week. My baby, my precious Garion was no longer here. I thought I was going to die along with him. It took a lot of people praying for me to help me through.

It's been about a month and a half now and I think I'll be ok. I look at my stomach and it's flat and I think to myself Garion should still be in there.

I'm scared to face December. I don't think I'll be in a holiday mood. I'm scared I'll fall in a depression. I should holding him in December, and I know I won't be. I want him back. It's not fair. I'll never hear him laugh or see him smile. I'll never hear him say mama or take his fist steps. I miss him so much and it hurts so much still. I look at his footprints and at his pictures and I love him more and more each day.

I want another so bad but the fear of another baby having the same problem keeps me from having another. The doctor said it was not likely it was genetic. I'm still waiting for the autopsy report. How do people get through this? I know GOD is carrying me now because I still can't stand. Thank you for listening and for your site.

Tumor in his stomach
Renton, Wa

Marcia's Comments: ... As your Due date and December come we know it is a hard time, look in our Drop Down Box for "Holidays, Anniversaries, and Due Dates" where these issues are discussed. Also e-mail others.

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

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"Our Sweet Tommy"

I am just beginning to come to grips with what has happened. Three weeks ago, when I was twelve weeks along, we had a routine ultrasound. It showed that Tommy had an enormous bladder, larger than his head.

Since then, we saw a specialist several times and he attempted last week to insert a catheter into Tommy's bladder so that it could drain. We all believed that if that surgery was successful, Tommy had a good chance of being born a healthy young boy.Unfortunately, the doctors were unable to perform the surgery.

The doctor told me I should return in a few days to see if the baby still had a heartbeat. For those 4 days, I grieved and grieved, and prayed for a miracle to happen in my womb. On Monday, the ultrasound showed that Tommy's heart had stopped beating and his body had already begun to deteriorate.

Tuesday morning at 3:35am, 6" 1.5 ounce Tommy was born. His little body with a terribly swollen belly had no real depth anymore as his bones had deteriorated. He didn't look like the innocent baby I dreamed of. I am so glad, though, that I did see him because it somehow helps me to come to grips with his death.

I believe I could feel Tommy moving inside my womb for a week or two before his birth and I miss that so much. I miss being pregnant and dreaming of having a little brother for my Emily.

My nephew died almost a year and a half ago at 16 months of age and I read a book named "Mommy, Please Don't Cry" by Linda DeYmaz at his funeral. It is a children's story written by a mother whose daughter died in her second or third trimester. It is a comforting book about the daughter being cared for in heaven. (I would encourage it for any of you out there).

Little did I know that God had shown that book for to me for my own needs as well. I look forward to seeing my nephew, Brady, playing happily with his little cousin, Tommy, in heaven someday.

I miss you, sweetie.

Thomas William "Tommy"
Second trimester loss/enlarged bladder
St. Louis, MO

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

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Losing A Son

We found out at my ultrasound at 13 weeks that something was wrong with his bladder-it wasn't emptying and was too big for a fetus.

It turned out that he was diagnosed as having posterior urethral valve,a blockage in his urethra. Without any intervention, they said it was lethal and he would die of renal failure.

So we chose to have minimal invasive surgery,in which they would place a shunt(drainage tube)in his bladder to drain the urine. The surgery had its risks. And it turned out to be a failure. They needed to place saline to add to the small amount of amniotic fluid, and when they did this, he floated away, with only part of the shunt in place. The next day they discovered that my water had broke and I was bleeding.

Two days later I delivered a 6.6 ounce, 8 inch baby boy, at 18 weeks. I was afraid to hold him, but I found out later it was harder to say goodbye. My husband held him for about 2 hours, just staring. It's the hardest thing we've ever had to expierence.

Colt Velez
Second trimester loss/posterior urethral valve
Boston, MA

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

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...sharing with someone in similar circumstances would be great..."

Has anyone a similar experience to me and would like to correspond? I lost my first child at 17 1/2 weeks, due to a trisomy 21 termination. My subsequent pregnancy ended in miscarriage at around 11 weeks.

I am now 41 and worry that I'll never have children.

I am a member of my local Share support group, which is a great help, but sharing with someone in similar circumstances would be great.

trisomy 21 termination & a Miscarriage Devonshire, Bermuda

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

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Goodbye Pascal

We were elated when we found out we were pregnant in Feb this year as we had had a miscarriage last summer at 8 weeks. I didnt want an amnio as I was sure if I'd lost one baby there was no way Id loose another. I mean how could that happen.

Well my doctor suggested an APF and I did it. When he phoned to say the result had come back high for trisomy 18 I still didn't believe anything was wrong as they keep telling you how the APF gives so many false postives, but he stressed that we go in for an ultrasound and an amnio.

Without going into details it turned out that my darling baby boy did indeed have an extra chromosome of 18. The numbness set in as we were sent from doctor to genetic counselor to here and there and told that it was lethal and the baby had no chance of living if indeed I carried him to term.

There wasn't much time to make this awful, terrible decision and we anquished over it for hours. To make a decision to take the life of this so wanted baby or to continue the pregnancy and who knows how much suffering he would go through. We finally decided to terminated the pregnancy and its been hell.

That was a month ago and thanks to my support group and social worker I have moved forward a little. We were lucky to be given the chance to hold and kiss and cuddle the tiny little angel who so looked like his dad. We got some photographs which we haven't received yet and a few little mementos. Yesterday I picked up his ashes in the tiniest container ever. My sweet baby in a box................................................

The pain is excruciating but it isn't as constant as it was and I'm facing my loss and grief as best I can. Lots of reading and writing.

Its fairly alienating as its hard for someone who hasn't experienced this to fully relate and try as my friends have, I need to be alone and feel my pain.

I would really like to connect with someone who has been through this horrific experience. I'd never ever heard of trisomy 18 in my life before and the whole thing has been surreal, and I sometimes feel as if Im watching a movie and this isn't happening to me.

I just do know this I can either sink or be stronger, and I know that one day when I've intergrated all this into my life I will be stronger if only for my baby. I find already the shift on life is noticeable. I know something is happening inside although Im not quite sure of the end result as yet.

Pascal Tremblay
20 May 1999
Second trimester loss/trisomy 18
Vancouver, Canada

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

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Rose ~ 17 March 1998

Last year in March I went for my 18 week scan, I was feeling really good about everything and hoping I was carrying a girl as I have already have two boys. We were having the scan and the radiologist didn't say much and because I was so excited I didn't realise anything was wrong.

They couldn't tell me the sex of my baby as she wasn't lying the right way. The radiologist turned around eventually and said your baby is very sick. I froze and didn't know what to do, I started crying, I felt really shattered.

My husband and I went home. Our midwife came over and explained what was wrong. She booked the hospital for induced labour. I said I wanted another scan for second opinion as I couldn't believe it.

When we got to the hospital, they were surprised I wanted another scan, and I had to wait as they hadn't booked it in. We still got the same reply but better to be absolutely sure, as this was our baby we were talking about.

They started inducing my labour, it was a terrifying experience, my midwife would not stay with me and treated me like I was a nuisance.

I had her she was beautiful ~ she looked like my yougest son. After I still felt like she was moving around me. I asked for an autopsy and clarification of what sex she was. They eventually came back and told us she was a girl, my husband and I cryed.

We went home, I felt like I was dying, my husband couldn't understand me, I felt so alone. It felt like we were not on the same planet.

Even though it is nearly a year and half ago the pain is still there it does get easier, but never goes. I would love to hear from other people who have being through the same thing, I would appreciate any help or advice. Thank you, Valerie

Second Trimester Loss/Goldenhar Syndrome
New Zealand

Marcia's thoughts: Please feel free to email others in this section or some of the other folks on this site. That is what this site is all about...outreach to one another in order to heal. Also, it may help to read through some of the information under "Allowing Grieving to Happen to Heal" and about the information under the "Father's Grief Menu"...which explains the difference between men and women who grieve. Also, realize that it hasn't been that long since your loss...grief takes time and work to cope with.

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

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My Story by Kerrie

I am 32 years old and have been married for 4 years. We had waited a while to have children so I was so happy to find out that I was pregnant last Oct.

Everything was going fine until around 15 weeks when I found out that I had gestional diabetes. I was sent to a maternal-fetal medicine specialist and a dietican. The diet worked great and was not having any problems. My blood sugar levels were normal as long as I followed the diet.

Then at 22 weeks, my world fell apart. I went in for a routine sonogram to find out if the baby was a girl or boy. I was sure it was a boy. The tech told me it was a boy and then went for the doctor. Doctor after doctor starting coming in the room but no one was telling me anything.

Then they told me that Samuel had Cogenital Adenmatoid Malformation of the Lung or CCAM. The doctor did not tell me what this meant until 30 minutes later when my husband arrived at the doctor's office. Samuel had a mass in his chest where he was supposed to have lungs.

He had very little healthy lung tissue and his heart had been pushed over to the right side of his chest. The prognosis was not very good, but the doctor had seen some babies with this be born and have surgery and then be healthy, so we were hoping for that.

We went back once a week for another sonogram. In two weeks Samuel had gone into heart failure and his body was filling up with fluid. We were told that our only hope was to go to Children's Hosp. in Phil. and have fetal surgery.

So were went to Phil. and met with the doctors there. We were told hat if we did nothing, Samuel would slowly die and that I could very sick. So we decided to have the surgery the next day. The doctors were able to remove the mass from his lung but then his heart failed and they were unable to bring it back.

My baby boy died during the surgery and when I woke up my baby was gone. Gone were all my hopes and dreams for my baby. I had always wanted to have children and could not understand how this could happen to us.

I still do not understand and I don't think I ever will. I miss my baby boy so much. I never knew that pregnacy could be like this.

Entry #2 - April 9 '00

Still missing my baby.

It has been 9 almost l0 weeks since Samuel died. It will l0 weeks on Tuesday. I miss my baby so much and I am in so much pain. I feel hurt and alone and I don't understand how this could happen.

I know that we did everything we could for Samuel and that helps some but this is so hard. I am attending a support group and it does help to talk about your baby and about what happened.

The last time I wrote about Samuel I put Phil. PA as our address but that is where we were when Samuel died. We had gone there for the surgery. We live in BR. LA.

Anyone who wants to talk is welcome to e-mail me. I still am not sleeping very well I am up at all hours. Kerrie

"Missing Samuel, eight months later..." by Kerri (10/2/00)

Samuel B. Haynes lV
Second trimester loss/Cogenital Adenmatoid Malformation of the Lung or CCAM.
Philadephia, PA

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

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