First Ultrasound tomarrow! :) Baby has anencephaly. (How things are going now)
I went in for my ultrasound expecting only good things, and got the exact opposite. After seeing my regular OB and a specialist, my baby was diagnosed with anencephaly. Its a neural tube defect that is always fatal. I don't know how to explain it well, but if you research it there is a lot of information out there. They gave me two options, carry to full term and deliver the baby or abort the baby now. Either way, the outcome is the same. No child has ever survived. To prevent my family from the hardship of dealing with the agony for the next 6 months, knowing that the baby will die once born, we have decided to terminate the pregnancy. A hard decision, and I promise you I don't need nor do I want your opinion on abortion. I do not need your judgment. But I do need your prayers. And if you have been through this, and understand my situation, I could use some encouragement. This has not been easy, and will only get harder, I'm afraid. To all of you who are pregnant, love every day. Even the hard ones. To all of you who are trying to get pregnant, never give up. And to those of you who have lost a child, please help me get through this.
Thank you for all of the support, I really appreciate it. I know most people will not understand what I feel, so I don't expect everyone to understand my decision. I just want everyone to know it isn't something we came upon lightly.
Anencephaly is a neural tube defect that effects the top part of the spinal cord. The area where the brain develops is not closed. The nerves are not developed the way they should be. This prevents the rear of the brain from forming, and most of the time none of the cerebellum is able to form. In addition, the skull does not develop to cover all of the brain. IF the baby could technically live, infection would set in so rapidly that it would be unstoppable. Here are the statistics for the life of an anencephaly baby...
Here are the statistics:
7% died in utero
18% died during birth
26% lived between 1 and 60 minutes
27% lived between 1 and 24 hours
17% lived between 1 and 5 days
5% lived 6 or more days
I found that ONE baby, called Baby K lived to be 1 1/2 years old. Completely dependent on life support, and unable to have any sort of life, the baby then died.
This does make the decision a difficult one, because I would love to have that few minutes with my daughter. But she is GOING TO DIE. I do not have a choice in that matter.
As for getting a second opinion, we absolutely did. I went to my OB and had the ultrasound done. The U/T tech checked out the pictures and immediately took them to both doctors in the building. They then sent me to Miami Valley Hospital, which has the best high risk OB doctors in the area. I had three u/t techs, and 4 doctors there looking over the ultrasound pictures. They all agreed. And they have the best ultrasound machines in the area. When I go back into the hospital, they will do one more ultrasound. If there are any questions, or upon my request, they will do blood-work to check that. These doctors are the best... and I respect their opinions, but I would never terminate this pregnancy if I didn't know for sure. When I was at my first ultrasound I could tell that something was wrong before anyone mentioned it. Anencephaly is a condition that is very visible. Looking at a side profile of my daughter, you could see her chin, her lips, her nose and her eyes, but above her eyes there was nothing. Where there should have been a skull and a forehead there was absolutely nothing. Her case is rather severe, and easily diagnosed. I asked the doctors what her chances are... even if she would be completely dependent on someone else for the rest of her life, if she did have 1% chance to live we would do everything we could to keep her alive, but her chances are 0. Again, some of you mentioned a misdiagnosis.. yes this happens but its not the case here. I truly wish it was... I wish they were wrong. But they aren't.
Others mentioned spina bifida and said that they know people who had this and survived. Anencephaly is a type of spina bifida. But it is a very severe form. Once again, its always fatal.
So, knowing what is going to happen, and trying to keep my head on straight, we have made a decision. We are going to terminate the pregnancy by inducing labor. I will get to see my baby. I will get to hold her. I will get to take pictures if I want. Since I will be only 15 weeks along, she will be very tiny. And because of the anencephaly, she probably won't look like the angel I imagine. But I have to see her. I cannot have this baby inside me for this long, and never see her face. We are going to name her, but we haven't decided on a name. We have two in mind. Since she will be so little, I'm not sure if there will be a birth/death certificate or not.
As far as a memorial service, we have decided that we are going to donate her body to research. This is probably a controversial decision, but if the loss we are suffering can help save someone else's baby then it is worth it. She will be in God's hands, and will no longer need her worldly body. There is a study going on at Duke University about Anencephaly and its genetic components. My husbands oldest sister had a baby three years ago who died of anencephaly. So far, the only research has been following the mothers bloodline, but if we can help to prove a genetic pattern, our daughter may be able to save the lives of many babies in the future, including any more we may have.
Right now I am holding together really well... I have break-down moments, but all in all I am okay. I think that I am still in shock and this hasn't hit me yet. The genetic counselor is getting things set up now, and the procedure will probably happen mid next week. Then will probably be when it hits me. I have always been a strong person, and I hope I am strong enough to get through this now. Again, thank you for all of your support. I really appreciate all of your support and your opinions. I just wanted to clear up a lot of questions many of you seem to have.
I wanted to update everyone on how things are going now... I know a lot of people have sent me messages and well wishes, and I really appreciate it. I was going to make a new post, but decided to just add it to this one so I didn't have to re-explain my situation.
The doctors and genetic counselors have FINALLY got things in line. My regular OB really recommended doing a D&E, because of some complications we had with my first pregnancy. He said I would probably go through hours of labor, and end up needing one anyways. I trust him very much, so my husband and I reevaluated our situation and we decided to take his advice. I go tomorrow for a consultation, and Wednesday and Thursday they do the procedure.
Its been very hard the past two weeks... I am feeling the baby move a lot more, and it just breaks my heart every time. I know this is the best option for our baby, and for ourselves, but that doesn't ease the pain. All I can think about is if this baby has the same blue eyes that our daughter has. Or if she would have the same little red birthmark our daughter has on her side. I've done a lot of research and studying since we found out about her condition. Its just a terrible situation. There are several other moms on here who have had the same thing happen, and their support along with everyone else's has really helped me get through this. I have even read some of the responses and stories to my husband, who is having a hard time, too.
My husband and I have been fighting a lot, and I think its just because we are dealing in different ways. I want to be with him constantly and he wants to take time by himself. I know that this situation could either make us or break us, and I pray that it will only bring us closer. We talk about it a lot, and that seems to help. We're trying our best to explain our feelings, so that we don't end up hurting each other. Our one year old daughter, Alexis, is truly getting us through this. On the days that we don't want to get out of bed, we know that we have a beautiful little girl that is depending on us.
Well, that is pretty much it. I'll let everyone know how it goes after this week. I just want to thank everyone for being so supportive. Even those of you who don't agree with our decision seem to understand that this isn't a normal sort of situation. Thanks again...
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