FAQ - Anencephaly
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I am 15 weeks pregnant and had some devastating news at my scan last week,my baby has part of its head and brain missing the sonographer said she thought it was one of two conditions but wouldnt say what.I later found out through my midwife one of these possible conditions is anencephaly.I have done a lot of research over the weekend and know anencephaly is 100% fatal .As you can imagine we are absolutley devastated this is a much loved and longed for baby.The sonographer wanted me to see a consultant right after my scan but i was too distraught so i am going tomorrow where hopefully we will get a firm diagnosis.Has anyone else had a baby been diagnosed with this or know of any other condition this could be i would be grateful for any answers.I also want to add we also have other kids who are completely fine it is just completley out of the blue which makes it even harder to accept and understand.

Hey girl! I am so sorry to hear that this has happened to your family!

Let me share with you a story, it is not an easy story, but it is a story of love and peace. Friends of ours, on finding that they were pregnant with their 6th child, were ecstatic. When they found out, at their 20 weeks u/s, that their baby had anencephaly, they were heart-broken. The doctor told them that their baby boy would probably not survive birth, that he would not react to anyone or anything if he DID survive birth, and that there was nothing to gain by keeping the pregnancy - he recommended they abort. The church said they would understand if they wanted to abort. Friends said they couldn't imagine carrying on a pregnancy knowing there was a 100% fatality rate.

This couple made a different decision. They decided to keep their baby. The doctor threatened to not see them anymore and they said it was ok, they had found another more compassionate doctor willing to go along with their wishes. Her thoughts were this: they could not KNOW that baby didn't have thoughts and feelings at this point with the amount of brain matter missing, but she, as his mommy, was going to give him as much of a life as possible. She felt that she had been entrusted to give him 9 months of life - and she was going to make it worthwhile. Daddy read to him nightly, their children talked to him daily. She did enjoyable and relaxing things throughout pregnancy like go to concerts, take long walks, and perform yoga. Anything that baby seemed to like and react to, or made her happy and joyful, she did for him.

When they went into labor, they had prearranged for a friend/doula to be in attendance. At birth (vaginal) the nurses cleaned him off, put a cap on his head, and handed him to the family - then they left. The doctor stayed to deliver the placenta, then left. The call button was there - and they were left as a family. The doula took pictures, offered encouragement, and they said hello to their baby boy. He survived the birth and, miraculously, he focused (pupils reacting) on their faces and breathed on his own. He stayed with them for 1 hour. Long enough for mommy and daddy, brothers and sisters, to hold him, rock him, sing to him, and tell him how much they loved him. He passed away in the arms of his family, surrounded by love.

It is not a happy story, an easy story, or a wanted story - but it is HIS life story. He never knew anything except love and affection, family and comfort. Their gift to him. His gift to them was that love does not need time and circumstances - it surpasses time and circumstances.

I cannot make any suggestions. I cannot offer anything but our prayers, thoughts, and personal experiences. I am sorry for the diagnosis. I have attached a link that I think could help you through this difficult time.  (+ info)


has anyone had an anecephelitc prenacy and given birth....would appreciate any imput??...and also how do you deal with this..grieving wise???

I'm so sorry to hear about your situation. It must be so hard for you--how far along are you? I've had patients who chose to terminate the pregnancy, but a few did choose to carry the pregnancy to term and deliver a live baby. Sometimes the delivery is challenging, as there are some higher rates of malpresentation and other complications.

If the baby is born alive and survives, it is possible to try to bottle feed, take pictures, hand/foot prints.

Ultimately its up to you to decide what you want to do. Grieving is so hard--I guess it was not meant to be. No matter what you choose to do, it will be hard either way. Do you have support from your husband and family?

Let me know if there is anything I can do.

Katherine  (+ info)

Should parents of babies born with anencephaly be allowed to donate the babies organs?

I have just learned about anencephaly in a Bio Medical Ethics class. The lecture also included donating organs of these precious children. I want to hear opinions on this.

I think donating the organs would be a wonderful gift. It could help another child live which is a blessing.  (+ info)

Found out my son has anencephaly has this happen to anyone?

I just found out that my son has anencephaly. (which means he has no skull) I have choose to be medical induced. I will have him in November the Dr say that he will only live for a few minutes. I was wondering if any one has been through this and how long did you wait to try again. My heart hurts so bad and just want to have a healthy baby.

You are doing the right thing. Best of luck!  (+ info)

Are there medical institutions out there who can help a child with anencephaly?

Doctors in the Philippines said he'll die after birth, he lived. They said he'll die in 3 days, he lived. They said he'll die in a week, it's been a couple of weeks and he lived. Baby Gabriel giggles while asleep. He responds to stimulus. He went through bad fever, but he lived through it. He didn't take milk for 12 hours, everyone said he's dying, but he lived.

I wish there's something out there to help Baby Gabriel. He's now over 3 weeks old, overcame all the death predictions by doctors and specialists.

Please help us find anyone who can help him.

Thank you in advance to all the kind-hearted people out there.

God bless you.

First of all , Doctors are not GOD and they cannot predict when a person will die , God is the only one who can say when a person will go. Secondly I commend you for having faith and not giving up on your son!!! I found a website ,the link is above , I hope this helps you . If not maybe you can google anencephaly and you may find some more answers . God Bless you and your family , your son will be in my prayers!!!!!! God Bless & Good Luck !  (+ info)

how many lives have been saved in total from babies born with anencephaly?

Basically, how many babies survived this disease?

It's tough to answer that question because there are so many forms and levels of severity. You would need to be more specific. Your answer could be found by comparing data on how many cases are diagnosed each year (could be found on an organizational website for the specific disease in question) with mortality data on the CDC Wonder site.
http://wonder.cdc.gov/  (+ info)

My friends baby who was stillborn had anencephaly, has anyone ever had or known a baby suffering from it?

She was unaware because she had missed her 22week scan and was booked in for three weeks later. She found out it can be due to a lack of Folic acid and is really blaming herself.

I have a friend who found out her daughter was suffering from this condition at 13 weeks and due to religous reasons they decided to progress with the pregnancy. She took plenty of folic acid and prenatal vitamins and her baby still got the disorder so there is actually not much that can be done. Folic acid can only reduce the chances but she cannot blame it completely on this.

My friend delivered her baby and the baby is now 9 months old. She lives in an incubator, gets fed through a feeding tube and is completely paralysed and blind.

Basically what I am trying to say is that even if the baby survives in the womb the quality of life is non-existant for these babies. As hard as it is on your friend she should know that there is not much she could do to stop it from occurring and it is better this way. It is really sad that wonderful mothers out there go through things like this but she cannot blame herself.

Like I said my friend did everything perfectly and her daughter still has the condition.  (+ info)

can baby with anencephaly grow a brain?

anencephaly is something where they only have brain stem and no real brains and piece of head missing. my friend says it's possible for them to grow brains. is it?

Anencephaly is caused by a neural tube defect during fetal development, it almost all ways realists in miscarriage or, more likely stillbirth. As for growing the cerebrum, this is not possible, as, after birth, there is little truly major nervous tissue growth (except that needed to grow the spinal cord to its full length and some minor cerebral growth until about age four or five) So, in summary, no a baby with anencephally cannot grow a cerebrum that it never had.  (+ info)

anyone ever been pregnant and the baby diagnosed with Anencephaly?


Know that none of it was your fault.. Acknowledge your babies, even if others don't or won't, they were a part of you and need to be remembered. Maybe one day a year send up some balloons to your angels....

Know that you aren't alone and see if there is a support group in your area for parents who have lost children.

Keep strong... *HUGS*  (+ info)

can hair perms cause anencephaly in unborn babies?

my girl friend recently had a baby with anencephaly, and she knows that the scalp absorbs chemicals so now she wonders if this is the cause of our babys birth defect.

The queen has spoken (above) couldnt be more wrong .Anencephaly is a terminal illness and there is nothing at all that can be done except to make the time a baby and its parents have together as comfortable as possible.An anencephalic baby will usually pass away within days of birth.If your girlfriend has had a baby with anencephaly she really needs to speak to her dr for more information.This is a neural tube defect that happens in the 3rd week of pregnancy and although it can have genetic tendancies it tends to just happen out of the blue.Although taking folic acid can help prevent anencephaly its no ones fault and as far as i know certainly isnt caused by having a perm.!!!.As for where i got my information,My beautiful baby son was born 6 weeks ago at 36 weeks with anencephaly and passed away shortly after birth  (+ info)

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