Has Anyone Lost A Baby To Anecephaly?

Angela - posted on 05/18/2010

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Hello i have lost three babies from anecephaly which was a hurting feeling they have no idea what the cause was and with the last baby they stated that one had it as well and when they did the study on my baby they came back with a report and stated that the last baby was fine which crushed me.

Jeann - posted on 02/24/2009

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I feel that they cannot understand. I didnt mention why our daughter died because the why was irrelevant to us. No tests showed before or after any information that could help with diagnosis or knowing if it could happen again...which our blessings proved it did not.

Support should come from the heart and not from understanding why you need it.

All moms who have lost a child at birth can feel your pain...don't get caught up in specifics...ours is not to question...but accept and move forward in love

Kristy - posted on 01/31/2009

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has anyone found any support groups that secialise in anecephaly... would really like 2 know as i said i tried it will have been a yr since Destiny's birth / death & still have not found any support groups infact it is rarely heard of... was thinking of starting a groupd weather it b support or just something 2 let ppl get it out or ask Q's whatever... it something u do feel alone with n really ur not... there r others that do understand... :)

Jeann - posted on 01/30/2009

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you are not alone. Our daughter died after 4 days and we had to make hard decisions also. Quality of life for all concerned was what we were advised was the best path to decide...I think that was the path to an answer..Her four days clearly to us...were important and enlightening to many of the people who knew her. God speed your heart to heal.

Kristy - posted on 01/28/2009

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Hi Jen,

I know adsactly what ur going through we found out @ 18wks our Destiny was an anecephalac baby... We were told that i was her life support & had no choice but to terminate only choice we had was when it was to be done we decided 2 wait til afta 20wks gestation then she would b classed as " a birth " Destiny was born sleeping on the 3rd of May 2008 we still have our moments... it is hard no-1 could ever deny that i haven't actualy spoken 2 some1 that has gone through the same thing... not many ppl understand... alot of ppl asked me if i think we made the right decision on the termination... i wish there was a dif way but with such a thing really there was no otha way... Destiny was alive right up til my waters broke in which case she kicked right through n ruptured my uterus... i lost 1000ml of blood n she nearly took me with her... luckly i survived n i'm here 2 care 4 my 2 sons along with their Daddy... trying 2 explain 2 ppl something u don't understand urself is heart renching... all the test they put u through n u/sounds... i spent my 25th b-day @ the hospital to have the conformation scan... i remeber after they booked my admission date everyday i would talk to her & just tell her how sorry i was & still am... i had some of her ashes placed in a locket i carry with me always... although she didn't get to c this world she will always b loved... i have looked for anecephaly support groups but they always seem to direct back to spinal bifeda... To all those parents family members & friends that have gone through this tragedy my heart goes out 2 u because i know how much it hurts...

Kristy xxx

Cara - posted on 01/27/2009

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Hi Jennifer. I have lost two babies to anencephaly. My mother also had one. I guess it is genetic with us. It has been a devastating, emotional, and in many ways bittersweet yet beautiful experience. I do have one little boy who is 2 and healthy as a horse. He came in between and is a blessing and a miracle!I had my first, a b oy, at 27 weeks, and the second almost fullll term at 36 weeks. She was stillborn, our fist lived for about half an hour.

Choosing when and how to have a baby like this is probably one of the most impossible choices a mother can ever be asked to make. My doctor at one point tried to tell me how great he thought it was that I wanted to carry the baby as long as I did, and I got mad at him and told him I felt good about my decision but understood exactly why a mother would make a different choice and had thought very hard about ending my pregancny when I found out about the anencephaly the second time. There is no "right" decision, there is only the one that feels right for you and your baby. I choose to have my two at different times for different reasons. I made the choices I did mainly because of what I believed about life and death and heaven and earth--it was really a spiritual thing, actually. But also because I had enjoyable preganancies and wanted to have as much time as I could with my baby before I said goodbye, and also because I felt like this was the only chance they had at life and I wanted it to be as long as it could be---my first doctor was concerned about my health and didn't reccommend continuing too far into the thrid trimester. The second time I lhad a different doctor, who didn't try to persuade me but it was evident he had some ethical comcerns with deciding when the baby would be born because that is also when it would die...that is why I decided to go as long as I did. if it happened again (heaven forbid, but we don't know what our odds are and I can't "bury" the idea of future pregnancies and the possibility of a healthy baby just yet) I would choose a time in between, maybe closer to 30 weeks...because I think the most importnat thing for me, and what I wanted for my babies, was the chance that they might be born alive.

It is such a personal choice, and so difficult to continue a pregnancy like this to the point where it is obvious, and well-meaning people get excited for you and ask questions...but it gave me the opportunity to let people in, to allow them to support our family...and I spent many months of my past pregnancy wishing I would miscarry so I didn't have to make the choice, and feeling angry at God and at my body and even at the baby....It was with a lot of prayer and contemplation in quiet moments, once in the middle of the night rocking my son who had woken up. I looked at him, so beautiful, and thought of my other son, gone, and this daughter growing inside of me who would also be gone. And I knew that they were not gone forever, that they would be mine again someday, and I felt that I would rather have my babies this way than not to have them at all. I felt close to them during my pregnancies, like I knew something of their personalities and could even try to picture them. This helped when they were born and looked so ...wrong, and hurt, to picture what they would look like someday, when everything was made right again, as I really believe with all my heart it will be.

I'm sorry I have rambled, I hope this has helped, and I would love to talk more if you ever want to.

Cara

Cara - posted on 01/27/2009

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Hi Jennifer. I have lost two babies to anencephaly. My mother also had one. I guess it is genetic with us. It has been a devastating, emotional, and in many ways bittersweet yet beautiful experience. I do have one little boy who is 2 and healthy as a horse. He came in between and is a blessing and a miracle!I had my first, a b oy, at 27 weeks, and the second almost fullll term at 36 weeks. She was stillborn, our fist lived for about half an hour.

Choosing when and how to have a baby like this is probably one of the most impossible choices a mother can ever be asked to make. My doctor at one point tried to tell me how great he thought it was that I wanted to carry the baby as long as I did, and I got mad at him and told him I felt good about my decision but understood exactly why a mother would make a different choice and had thought very hard about ending my pregancny when I found out about the anencephaly the second time. There is no "right" decision, there is only the one that feels right for you and your baby. I choose to have my two at different times for different reasons. I made the choices I did mainly because of what I believed about life and death and heaven and earth--it was really a spiritual thing, actually. But also because I had enjoyable preganancies and wanted to have as much time as I could with my baby before I said goodbye, and also because I felt like this was the only chance they had at life and I wanted it to be as long as it could be---my first doctor was concerned about my health and didn't reccommend continuing too far into the thrid trimester. The second time I lhad a different doctor, who didn't try to persuade me but it was evident he had some ethical comcerns with deciding when the baby would be born because that is also when it would die...that is why I decided to go as long as I did. if it happened again (heaven forbid, but we don't know what our odds are and I can't "bury" the idea of future pregnancies and the possibility of a healthy baby just yet) I would choose a time in between, maybe closer to 30 weeks...because I think the most importnat thing for me, and what I wanted for my babies, was the chance that they might be born alive.

It is such a personal choice, and so difficult to continue a pregnancy like this to the point where it is obvious, and well-meaning people get excited for you and ask questions...but it gave me the opportunity to let people in, to allow them to support our family...and I spent many months of my past pregnancy wishing I would miscarry so I didn't have to make the choice, and feeling angry at God and at my body and even at the baby....It was with a lot of prayer and contemplation in quiet moments, once in the middle of the night rocking my son who had woken up. I looked at him, so beautiful, and thought of my other son, gone, and this daughter growing inside of me who would also be gone. And I knew that they were not gone forever, that they would be mine again someday, and I felt that I would rather have my babies this way than not to have them at all. I felt close to them during my pregnancies, like I knew something of their personalities and could even try to picture them. This helped when they were born and looked so ...wrong, and hurt, to picture what they would look like someday, when everything was made right again, as I really believe with all my heart it will be.

I'm sorry I have rambled, I hope this has helped, and I would love to talk more if you ever want to.

Cara