SHARE Atlanta Pregnancy and Newborn Loss Grief Support Our baby ... Our Dream

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Letters from folks seeking and /or giving support

Letters sharing experience, seeking and /or giving support 2002 - 04

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

"A Dreadful Decision" by Leslie (9/26/03)

"Emily Jo Smith ~ 9-30-04" by Breyanna (1/11/05)

Our Two Angels

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

Early Prognosis of problems and early death

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

Information was important

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

Birthplan and special time with Angela

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

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

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

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

Supportive nurse was important

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

Jeremy ~ similar situation

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

Memorial Service and Visitation

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

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

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

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

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

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

May prayers grant you peace,

Wendy and Tom

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

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

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A Dreadful Decision

After a super easy pregnancy with our first daughter, I thought nothing could affect us. We were the perfect young couple in great health. So when I went for a routine u/s alone at 21 weeks into our second pregnancy, I couldn't imagine the words coming outof the perinatilogists mouth. It was like a blur....."Dandy Walker with severe hydrocephalus....some normal, some not, yours defintely in the last category......we can terminate as long as its this week". And my husband not even there as it was going to be a routine u/s to see our little son's body growing inside me.

The fateful call to my husband's work, the howling, the decision had to be made. We went to the neurosurgeon and he said "not good outcome, won't tell you what to do, but......". I remember standing on the sidewalk in front of the doctor's office and holding my husband crying and knowing what decision had to be made to save him from suffering. It was the most horrible peace I ever want to suffer. But we knew that we were making the right decision for our family.

Two days later I had a D&E that ended his life forever. And saved him fron certain pain and suffering. It didn't, however, save us from suffering. As we approach the 4th anniversary of the day we let him go and the first anniversary of his little brother's death, who was diagnosed with the same thing, we are still suffering for them. They are much loved and will never be forgotten.

Chuck Stouffer
Dandy Walker 09/30/99
Stillborn/prebirth support - hydorcephalus
Atlanta, GA


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

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Emily Jo Smith ~ 9-30-04

On September 1st 2004 I went in for a regular ob atppointment. While I was there the gave me an AFP test to check for down syndrom. I didn't really think anything of it because I thought my baby looked really healthy. On Septemeber 10th I got a call saying my Dr. would like to talk to me about my test results. He told me that the test came back abnormal and that I need to go to South Bend Memorial for a level 2 ultrasound.

On Sept. 14 I went for my appt. When I got there they asked me what I was having and I told them I didn't know yet. So during the u/s they told us it was a little girl. I was so happy. Just a few minutes later the Dr. left. When she came back she brought 2 more dr's with her.

The male Dr. looked at me and said " I'm sorry but your baby is dying" then he proceeded to tell me that she had anencephaly. On September 28th 2004 I was induced to have Lil Emily. By the end of the night nothing happened so my mom went home and my boyfriend stayed. We were thinking that she would come the next morning. We were way off.

At 7:29am on thursday September 30th. I gave birth to my beautiful 8 1/4in 6.3oz anencephalic baby girl. Emily Jo came into the world without ever making a sound but what a imprint she left on our hearts. She changed my life forever and I though I wish I could've kept her with me. I'm happy that she'll never have to be hurt by the world's evil ways.

I love and miss you dad(killed)(3/26/04)and Emily(stillborn)(9/30/04) You'll never be forgotten!!! But always missed!!!

Emily Jo Smith
SouthBend, Indiana


Marcia's thoughts: Our son, Seth, was anencephalic, too. He was full term...we didn't know he had a problem until during his birth. There are several stories about these special children on our site, and there are numerous sites about the condition as well. We have had two children born without the condition and feel blessed. The SHARE Atlanta families who have experienced this situation have gone on to have children without the condition. Folic acid is often a choice for moms who have had "neural tube" issues with their children. The March of Dimes supports this procedure (it is in tablet form). Please know that some parents choose to carry their baby to term and the Anencephalic Foundation supports this alternative. We support the decision that a parent chooses. We are here to help you through your grief. Our thoughts are with you as you move through your grief. You have had much to carry with the death of your father as well. I am very sorry for all you are coping with.

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

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