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First Ultrasound tomarrow! :) Baby has anencephaly. (How things are going now)

Posted by on Jun. 30, 2008 at 11:56 PM
  • 245 Replies
My first ultrasound with this baby is tomorrow.  This is my second pregnancy, and may be the ONLY shot I have to find out if its a girl or boy!  I've had a completely healthy pregnancy, so they are just doing a routine ultrasound.  With my daughter, they did one at 4 months, and they couldn't tell whether it was a girl or boy.  I BEGGED my doctor to do another one.  He ended up having another one done at 7 months (I think more because I begged than anything) and I could tell then.  I'm so exciting!  My hubby is hoping for a boy, of course, but I wouldn't mind either way!  Wish me luck everyone!

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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by on Jun. 30, 2008 at 11:56 PM
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Replies (1-10):
by on Jul. 1, 2008 at 12:02 AM
Goodluck I will pray that no matter what it may be Girl or boy that both ur baby and u stay perfectly healthy!
by on Jul. 1, 2008 at 12:04 AM
congratulations and good luck momma
by on Jul. 1, 2008 at 12:10 AM
Good luck! I could never sleep before any of my u/s appt. cuz I was so excited!

by on Jul. 1, 2008 at 11:32 AM
good luck, I can't wait to get my next ultrasound :)
by on Jul. 1, 2008 at 12:05 PM
Good luck ! I had problems with all three kids so i had to have several. I never found out. I felt that not knowing and finding out after they were here was the surprise that made the work worth it, not that it wasnt worth it. Good luck and here is to a healthy happy baby and an easy delivery.
by on Jul. 1, 2008 at 12:08 PM
Good luck and let us know what you find!
Lilypie 2nd Birthday Ticker
Lilypie Expecting a baby Ticker
by on Jul. 1, 2008 at 8:52 PM

Congratulations on the upcoming birth of your child! I had my first ultrasound with my first son in was a new thing back then. I was almost 4 months pregnant and the doctor was explaining to me what he was looking at and then my doctor told me your baby is waveing at you and I could see his precious little hand and yes he was waving at me...lots of tears..
Best wishes for a beautiful healthy baby and hope to hear what the doctor says if you are blessed with a boy or girl..  
by on Jul. 2, 2008 at 2:18 AM

I can understand what a big decision this was for you.  It was probably your worst nightmare to have this happen with no forwarning that anything was wrong. I have a friend who is one of the best people i know that had a "healthy" pregnancy with her first child `.  he was a little boy named Sawyer and she found out at his 6 weeks check up that he had sma spinal muscular atrophy and had maybe 6 months to live. she lost him at 3 and 1/2 months and it was the worst time in her life.  She showed me that you need to love NOW, be in the NOW.  it has been almost a year and she had her baby cremated and had a service for him and it helped her to say goodbye. If i could suggest anything it would be to have your baby creamated or buried and give your child a name and hold your child and get the foot prints and hand prints. It will help get you through like it did for her.  This is your child and it was concieved in love and is loved no matter what.  You were in love with him or her as soon as you knew they were inside you.  You are going through alot of emotions and pain right now but don't think that getting all the above mentioned is not worth your time because you will want your baby with you and celebrated as it should be.  Things happen in which we have no control of everyday many many people can attest to that. Keep remembering it is nothing you ever did there is nothing that could have stopped this. My heart is with you as it was with my dear friend she decided to tell Sawyer's story to anyone who would listen in hopes to help others and she also raised money for the sma in Sawyers name to try to keep this from happening to others and get the word out about genetic testing for couples. You are stronger than you think and God will get you through even if you don't believe in him he will still help you.  if you ever want to talk about anything your feeling please contact me. it helps to have a person to share all of it with the good and the bad and the things we tell ourselves that we dare not speak for fear of it.  I am 31 years old a mother of one with the help of fertility txmt . I havve Lupus (SLE) was just diagnosed in march of 08 no one from my family has ever had it and it is a desease that involves pain on a daily basis and nothing for me is gaurenteed not tommorrow not next year nothing. Except the pain and the daily reminder to give as much as i can to this world and love all that i can because anything can happen to anyone at anytime anywhere.  Somehow you will get through this you have another child that depends on this .  my prayers are with you .....

by on Jul. 2, 2008 at 2:21 AM
I'm so sorry that you're day that was so promissing has turned so sad. My prayers are with you and your family.
by on Jul. 2, 2008 at 2:22 AM
I am SO sorry hun, and I can only imagine how difficult of a decision this was for you and your husband to make.  my thoughts are with you while you go through this difficult time.  *hugs*
Riley Quinn Chambers EDD 11/21/08
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