Anencephaly or Other Neural Tube Defects

In January of 2008 I faced the same situation. I never dreamed in a thousand years that when we went in for the ultra sound we were going to get the news we did. My only thought going in was is it a boy or a girl. I wish I could give you a magical answer on how to handle this but I don't have one. It is a grieving process and allow your self time to go through the whole thing. As far as the second part of your question goes just know that each time you attempt to bring a new life into this world there are risks. You must be willing to accept the risks with the good that can come. I know for my self and my husband we decieded that the best way to honor my son was to try again and take a chance on life. I am so glad that we did because as of this post my new son is a healthy 7.5 month old who brings me joy beyond words. My 4yr old daughter couldn't be any happier with her new baby brother than she is. Every time he smiles I thank Emmit(my angel son) for giving me the chance to meet Ahrik(my new baby son). We also deceided that we would have Emmit laid to rest at cemetary with other children who passed away too soon. I resisted twanting to do any of it at first but am now thankful that we did. I needed to have closure and to make peace with the whole situation. I still cry about it but every day it gets a little better and I know that there was a reason why Emmit wasn't ment to be with us for a long time. Some day you will feel this too. I wish you my heart felt condolences on the loss of your child and the hope that some day you will take another chance on life again because it is worth it.

I am so sorry to hear about this. What an awful situation. I have not been through that, but have lost 2 babies due to premature birth (one at 23 wks, one at 26 wks, both we born alive, but only survived a few hours). We had a funeral for each baby and had them buried at the cemetery where other family members are buried. I would suggest, as the counselor did, having the baby cremated, and have a small gathering at your home to honor the baby - with only close family and friends. If you have bought a stuffed animal for the baby, I would give that to your son, so he can have something in remembrance of the baby. Again, I am sorry. I hope you are able to continue on and have another healthy child.
S.

Sweet Lady! Oh what heartache you must be feeling! You and your baby will be heavy in my heart today!

Having struggled with miscarriages and one baby born still - we formed a pregnancy and infant loss support group in our area. It's now nearing eight years - actively running each month!

The first thing I would suggest is to follow your heart! We were presented with questions throughout delivery: where would you like the funeral? which pastor might we phone? do you want the baby baptised? would you like to bathe your baby? And in the end, we were able to hold her, kiss her, tell her we love her and good-bye for now ~ before collapsing.

The morning after leaving the hospital, we met with the funeral director who ultimately helped us decide where she'd be. For us, the right place in the end. I considered cremation so I could keep her with us - but when we decided the VA cemetery is where my husband and i will eventually go... and what if this happened to us again...? We decided we could eventually place baby with one of us, cremate baby in a worst case scenario (later) and keep her with one of us or ?? but the VA seemed the way to go. Our only regret is that it's so very military strict and we cannot place items there longterm.

Anyway - through the years, i've made it a mission or ministry of sorts to reach out to moms hurting and healing - remembering to reach them at milestone times - and in that process have grown to know there is no right way to go through this. No wrong way. It's in following your heart and simply healing. Take your time making a decision. Baby in an infant section of a cemetery where there can be night lights (solar lights) or forget me not flowers scattered in the field nearby or a place for a special bench to sit near him/her? Or home in a prominent place in your home - with little plushies or family photos around?

There is a precious lady who has also made reaching famiiles in loss her ministry. Her name is Candy - and you may find her website helpful: www.missinggrace.org . She suggested to us: planting a tree in baby's honor, naming a star, planting a perennial garden in baby's honor - absolutely scrapping what we had of baby (u/s photos, pieces from her funeral) and we also purchased an oak bench to place things in.

She changed our lives.

I will keep you in both our thoughts and prayers as you have baby - hold baby - and lean on one another throughout your healing!

~T.

If you get this in time, have the hospital social worker call Now I Lay Me Down To Sleep, a photographer will come in and make beautiful images of your baby for you, with you holding it or not. I am currently on leave of the organization due to my own pregnancy, but it is a very fulfilling volunteer position for the photographers that work it. There is no charge to you, and you will typically get a disk of images. Gives you something to cherish for the 20 or so weeks that you had a life growing inside of you.

God bless.

A friend of mine recently lost their angel baby to anencephaly. My heart goes out to you. As far as getting pregnant again, I've heard about people taking folic acid for a certain period of time before TTC and then maintaining a certain level of folic acid intake during pregnancy. That would be something your doctor would know more about. As far as cremating, that would be a decision that's up to you. Our friend carried their little one to 34 weeks and then did an open casket. She was beautiful. Here's a link to a story the pastor wrote and read at the service: http://pastorsheets.blogspot.com/2009/11/heavenly-glimpse...

i had to google this-i never heard of it-along with alot of other stuff ive read on this site.how horrible-i have no answers-but am truly sorry for your loss-godspeed..i would have to agree on a 2nd opinion...really....think about it.

I am soooo sorry for your loss. It is my understanding that neural tub defects have decreased b/c of pre-natal vitamins having the folic acid. Just make sure you are taking your vitamins before TTC so it is built up. (I could be wrong on the part of the vitamin, but I'm pretty sure it's folic acid). Prayers to you and your family.

I'm so sorry to hear about your news. My heart goes out to you. I follow a blog of stay at home moms, and two of the women who write for it have had babies with anencephaly and have gone on to have other healthy babies after. I was looking for the older posts, and couldn't find exactly the one I remembered, but you can read these:

http://buildingcathedrals.blogspot.com/search/label/Pregn...

Both of the women carried their babies to term and then had funerals for them. I think that would be extremely hard, but also extremely loving.

I'm sorry but I'll say it SCREW you jerks who have the audacity to judge this women. Self righteous pieces of junk. Let those that DON'T live in glass houses cast the first stones. Flame me all you want! Go for it… but leave this poor women alone who had to make I’m sure the toughest, most impossible decision of her life. She doesn’t need you to judge her or make her feel badly. You aren’t any form of a god. Not to mention she wasn't even asking your opinion if she should have the DNE or not. But that is an entire other point.

I do agree on another opinion though so you will never second guess your decision. I've read alot of people do that and then they never feel like there was anything else they could have done. Bad things just sometimes happen to good people. I'm very sorry for that. I had to get a D & C once and I didn't get a second opinion that the baby did indeed not have a heart beat before I got one and now I always kinda wonder... like a .00001% wonder. But even that little bit crosses your mind once in awhile.

I'm so sorry for what you are going through. I don't have a similar story but I understand how horrid of a decision this had to have been. I've had 5 miscarriages and it is so hard when you lose a baby you so badly wanted. Most of mine were lost before 8 weeks... but one I lost at 3 months along and that was hard. I thought i was in the clear zone. I mean only 5% of babies are lost after 12 weeks. Well I learned I could be that 5%. That was so hard. I learned that statistics mean nothing and you can always be the negative one. But I have 3 children which means you can always be on the good side too! So that is something to think about.

My last one I lost in Feb. of last year. I got an ornament that said parents to be while I was still pregnant with that child. This year I found the ornament and even though it was very hard I put it on the tree. I thought of that wonderful little baby that wasn't meant to be all Christmas. I put the ornament away and will see it again next year. That is how I honored the last baby. I wasn't strong enough to name it... or do anything... but I have an ornament to honor it's short existence.

If you would like cremate the baby and keep it‘s ashes well that is always a good option. Alot of people that have lost their babies around then after they have them they dress them up, wrap them in a blanket, take pictures with them and either bury them or cremate them with a service. But they keep the blanket and the clothes forever naturally.

I know it will be so hard to heal and I’m so sorry for that. I would for sure go to the genetic counselor and see what they say and see if this is a freak occurrence or not. If it is possible again you'll have to sit down with hubby and see if you could take this happening again or not. If not maybe stop for awhile and re-examine it in the future. After my last miscarriage we tried again right away. I was on watch every second of every day. I knew that if I miscarried that baby I would be done for a LONG time because I couldn’t' take another loss but luckily I didn't have to face that and I have a newborn. But being pregnant was so hard. Every little feeling, cramp, discharge, drop of blood was most certain death.... but it wasn't. So try and remember that there are happy endings.

Again I'm so sorry you lost your baby. My heart goes out to you.

I am so sorry for your loss. This is doubly traumatic because friends and family might not understand if or how to offer sympathy and support. I think cremation sounds reasonable and then maybe have a memorial event for close family and friends. I am certain your church can advise you or if you are not involved in church, maybe just invite people to gather with you and your family at a favorite restaurant. Another thing I have seen parents do, is buy-a-brick at a local park and have it engraved (I think Como Park sells memorial stones/pavers.)

As for future pregnancies..I am not positive, but don't think neural tube defects are genetic. Meaning; unlike something like cystic fibrosis...It is not something your are a carrier of. This may be something your genetic counselor can help confirm. I believe they can do...not an autopsy...It is not that invasive. But after the birth, they can examine your baby and maybe find some clues to help you answer all they whys and what ifs you must have.

I am so sorry. I haven't gone through this myself, but I did have a miscarriage. I'm sorry for your loss and everything that goes with it. I hope that the genetic counselor that you are working with finds nothing that will hinder future pregnancies that you may choose to have when you are ready.

I'm so sorry for your loss and what you are going through. I can't give advice on what you should do right now. My son has Spina Bifida and turns 3 tomorrow! I'm sure that someone has talked to you about Folic Acid and taking a large dose of it before attempting to get pregnant again. I was tested for MTHFR and it came back that I was compound heterozygous for it. You can Google it to learn more about it. So I am now taking a mega dose of folic acid and a baby aspirin daily for that. They can't say that it caused the Spina Bifida, they don't know what causes it or ancephaly, just a lot of ideas. You never expect for this to happen. We're young and have no known family history of any birth defects. Try to not beat yourself up about it, something just didn't go right. But there is hope. My perfectly healthy 8 month old son is proof of that!

Hi Alison. I am 29 years old as well and lost my baby girl to anencephaly, on Sept 22, 2009. I truly understand what you are going through. I never thought I would have to deal with anything like this either, I have my good days and bad. There is not a day or night that goes by where I don't ache for her. I often get an over whelming feeling of panic and helplessness because I just want to hold her and make sure she is okay. On a more positive note, I also feel like I have my own little secret sometimes when out and about(trying to go on with my life)...I have my own angel with me always, and when ever I want I can close my eyes and hug and kiss her and tell her I love her. That may seem silly to some, but it helps me a lot. Like you, at 20 weeks I went to find out if she was a girl or a boy. The shock was devastating as you know and it so hard to know what to do when you have been hit with news like that. Her name was Eva-Jean. I delivered my baby at 22 weeks. It was a hard decision as you know and it hurt me reading some of the comments on here as well. I realize that some don't know what they are talking about though, that this situation is not a miscarriage or an abortion(dnc). Also, that doctors can determine how severe the disorder is. (I know all levels of anencephaly are severe, and have no chance of survival, but cases do differ in severity)There are so many reasons why making a decision like this makes you an incredibly strong woman.(whether you are religious or not) I got to hold Eva-Jean for a few hours, she was baptized and had a funeral. Actually before I delivered her I went to my church(Roman Catholic) and she was blessed by a Monsignor Vladimir. He prayed for both of us and blessed us. I talked to him briefly about a baptism right after the birth( I was worried and curious as I knew she would be gone by the time she 'came out', and wasn't sure how the baptism would work ect..)He reassured me that in a case like this I was doing the right thing and it was totally acceptable to have a baptism. I had her buried and she has a beautiful headstone that actually finally just got put in about a month ago. There are so many ways to honour your baby. One of the easiest(and sometimes hardest) is to talk about your baby. Make him/her a part of your life whenever you feel the need to. The truth is this baby changed you forever and he/she is a part of you. I actually just found out about two hours ago that I may be pregnant again! (a faint line on the home test) That's why I am still awake and happened to come across your question! I am very happy but very scared that something like this may happen again, even though I have been told the chances are low and I do take folic acid. I guess it is only natural to worry. I'm not sure if any of this helped, I just wanted you to know that you are not alone. My thoughts are with you and your family...ps--did they give you a copy of your baby's foot prints?

I would recommend getting a second opinion and not ending the pregnancy. There are many people who have been misdiagnosed at 20 weeks. My little girl was said to be perfectly healthy after my level two ultrasound. She wasn't and died at 31 weeks.

I have buried two of my little ones. We have named them and had services for them. I have a little piece of their blankets. I have placed a very tiny piece of each blanket in a locket that I wear.

We were very frightened to go on to have more children. We did though. It is scary and we prayed very hard. In the end we knew that we had survived the deaths of two children and we were much stronger. Our little Isabella Rose was born, with much help from a very fine doctor. I truly know what a gift every life is. I know my babies in heaven pray constantly for me and the rest of our children. I can't tell you how surprised I was that their little lives touched me and my love for them has grown just as the love for all my children.

http://www.youtube.com/user/aprilswenby

First off, I'm so sorry for your loss. My friend's sister was given a diagnosis via Ultrasound that her baby wouldn't survive due to a genetic issue. She chose to carry the baby until she died and then gave birth to her. They went through genetic testing to find out what the problem was, and what the chances were of having a healthy baby (she already had a healthy 2 year old daughter at the time). Due to the genetic test, she was able to determine that this genetic issue would happen 25% of the time. She and her husband chose to get pregnant again and had another baby girl who was healthy. It was a heart wrenching decision for them but they too wanted another baby. The time leading up to that 20 week US was hard but now they say it was worth it.

One piece of advice before the DNC though, is to get a second opinion. Sometimes things are mis-diagnosed via US.