Hi my name is Christina Im 28 yrs old and have a question concerning anencephaly. Ok, I have a healthy daughter (1st pregnancy) that is 6 years old now and is very very healthy. Then in 2009 I found out I was pregnant with out second child another girl but that she had a rare neural tube defect called Anencephaly. With much deliberation with God, and family, and my heart I decided that her fate was already chosen for her so we terminated the pregnancy when I was 21 weeks. My doctor was an angel herself, I was brought to the hospital, given Cytotec that induced labor, and pushed her out with no pain medication. She was 4 ounces, and they took pictures of her arms and legs for me to have in a memorial box. The womens center staff was amazing, my nurse was an angel. When they brought her too me they asked if I wanted to see her face, and the only way you will know is if your ever in that situation, so at the time I was so distraught that I chose not to see her face. I held her hand and they said she still had a small heart beat left, but not long she passed. After that happened I was sent home and had to come back that night because my hemoglobin was 8 and my heart rate was in the 190 so I was transported to ICU for 4 days. And I had never had any heart trouble. My heart is working fine now (Thank God).. But long story short, IM in RN school almost finished and we were talking about defects, and now Im scared because in a year Ill be ready for my next one, I take 2mg Folic Acid everyday and a prenatal vitamin, but all these websites are saying my chances of having another with anencephaly is 20 times likely more to happen. I am scared to death, I already had one normal Pregnancy and Im on folic acid, I am scared and dont want to have to do genetic counseling. Is there anyone out there that had a normal child then an anencephalic then another normal child? Need advise. thanks:)
I just wanted to say that my heart goes out to you. You have been through so much. My friend's first son was a preemie and she had pre-eclampsia. He did not live. But she had 2 more healthy sons without the pre-e, even though her risk was higher. I hope the same for you.
Christina, I am sorry your have had this sad experience. Go get the genetic testing done on yourself and your husband. They will be able to give you much better information on your risk of anencephaly and hopefully some peace of mind.
My friend had two anencephaly babies a few years apart. The risk rate you stated is high from what I have seen. From the research I have done, it was around 3-10% of recurrence risk for some form of neural tube defect. It really is best to seek genetic counseling. In any case, I'm so sorry and I hope that you have peace regardless if you have another anrncephalic baby or a healthy one!
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My friends first baby was born with anenchephaly and she got to spend a few precious moments with her precious baby boy before he passed. She waited years to try again because she was told the risks of having another baby with the same condition. Well now she's has 2 beautiful children! Both are perfectly healthy. Stay strong and pray and you will find your answer:)
So sorry for your prior situation - it must have been so hard to go through.
2 things:
1) I know a lot of nurses and there is a definite phenomena re: self diagnosis, etc. while in nursing school. Big time doubt, thinking something is seriously wrong with them, etc. when it's just a mind game they have played on themselves. **** I know what you went through was real - I mean this more re: the % risks, and what your specific risk is***.
2) "I am scared and dont want to have to do genetic counseling."
I'm confused by this statement... why wouldn't you want to do genetic counseling? Wouldn't it give you facts instead of (the above) nervous - self diagnosed concern?
Fear is not a bad thing. Not doing what's best, because of fear...is a bad thing. You really must see a genetic counselor. What's worse? Seeing a genetic counselor and learning your true risk, and moving forward from there...or...not seeing one, and possibly aborting another baby? I'm sure plenty of people had a normal baby after, but that was THEM, and they have different genetic factors then you. That has nothing to do with you and your risks.
I would do counseling and find out your risk factor again. I think you need to be prepared on how you will handle your next pregnancy
I am so sorry for your experience. How heart-breaking. I know someone, who was a high school friend, who had a healthy son, a daughter with anencephaly (who obviously didn't survive), and then two more healthy daughters.
Im sorry you had to endure this. Your chances are 3% that it will happen again and it is not a heredity issue. I wouldnt let fear rule out you having kids. I wouldnt have genetic testing done but I would suggest talking talking counseling, your dr may be able to suggest someone for yoru situation. Best wishes!
I have not had this experience personally but I am a nurse-midwife and I recently had a patient give birth to a healthy baby after having a previous baby girl who she lost to anencephaly. Although she was anxious during her pregnancy it was very healing for her to have a healthy pregnancy and baby,
