Friday was a day I had been looking forward to for weeks and weeks.  We got home Thursday from taking our 3yr old to Disney World for the first time, and Friday I had an u/s scheduled and planned on finding out the sex. 

Instead of being told the baby looked great & if I having a boy or girl, I was told something was wrong.  The diagnosis is anencephaly, which means the skull and brain did not form correctly.  I go Monday for an advanced u/s, but from what I've read about it the chance of a misdiagnosis this late in the pregnancy is very low.  So pretty much I go Monday to have it confirmed that my baby will die.

Right now, I don't feel like I can make it through this, but I know I have to somehow for my little boy. Thank goodness I have a wonderful & supportive husband, but to see him break down just breaks my heart even more.

I hope not, but does anyone have any experience with this? 

Info states that most babies are born stillborn or die w/in hours.  How can I go another 4 months carrying a baby that I know is going to die? But I want to have the baby & name it....I can't just get rid of it like isn't a person that I feel move inside of me everyday.

 I don't feel like I will ever be the same person after this. The how's and why's are tormenting.

I'm sorry for the horrible information, but I just needed to express my pain and personal torture somehow.

 

Hi,

So sorry to hear your devastating news. I had two pg's with anencephaly. It is a neural tube defect. It happens even before you know you are pg. To prevent this from happening with future pg's, you must be prescribed 4 mg of folic acid daily. I am 18 weeks pg now, and had my amnio last week, and now everything is looking perfect, besides the anxiety. You will be very sad for some time, but your black cloud will eventually lift. I opted to end both pg's, so I was induced into labor and delivery. Both babies were born dead, but I got to hold them, and I also had them baptized. I didn't take alot of pictures, and I regret that. I wish I could have had pictures of them naked, because their bodies were so perfect. Either way you decide to have your pg, know that it was what is best for you. I don't regret how my docotor and I chose to do things, the protein levels in my system were so high they were making me continuously sick. If you can, be sure to have your littlle guy with you when you leave the hospital, with you holding him, so your arms won't be empty when you leave, cuz that hurts. Also, I was jealous when I saw other pg woman. I sure loved to see other babies tho. that didn't make me jealous, it made me more happy to hold them. Good luck, and know that I am praying for you and your family. Also, cry when ever you have to, it helps to let it out. Bye.

Thank you for sharing your story Evelyn. I am so sorry you went through this at all, much less twice.

I actually find it comforting to know how you and your doctor handled it.  I haven't had much luck in the last couple of days in finding info on what would happen if I decide to end it now.....I do feel strongly that I need to be able to see and hold the baby, and I was hoping there would be a way of that happening besides going full term.

Thank you for your thoughts and prayers, I need all of them right now.

I hope your pregnancy continues to progress perfectly, and before you know it, you'll be holding your healthy, beautiful baby.  It looks like you are due a few weeks after I am, so I know I will be thinking of you at that time.

 

I am so very sorry. Please visit the babycenter boards. There are many many more people who post on there. They can help you through this. I use to be Lene on here but for some reason I can't log in any more under that name. I lurk on babycenter all the time. Please please visit the boards. I'll be praying for you and your family. *hugs* http://www.babycenter.com/306_fetal-complications_1517069.bc here is the fetal complications board.

I am so sorry! One of the hardest things we could ever do as moms is to lose a child! I dont know if you are religious at all but I am and I pray that your little man will always know how much he was loved, and I will be praying for your family during this trying time! Whatever you do dont hold it all inside, let it out, wether that be crying or talking to somebody! 

Wow, I'm so sorry to hear about that. That has to be devastating news. I will keep you in my thoughts and maybe it will be misdiagnosed. If you need anything we are here for you 

Hi again,

Been thinking about you today. Wondering how your u/s went. Very difficult if it went the way you were suspecting hey? Any way, I had my first anencephalic baby at the Mayo Clinic in Rochester MN. Very professional and helpful hospital. My first baby's name is Landon, he was 3 ounces, 6 1/4 inches. He was born on 3-20-93. I have a tatoo of his name on my shoulder of a heart with wings and a halo with his name in a banner. My second baby withaly I named Ethan. He was born on 12-16-99. He was 2.5 ounces and 6 inches. My Mom was with me when I had Landon, she tried to cover my view when I delivered him, but nature takes completely over, and you just want to see your baby. He was absolutly perfect. I held him for a very long time, had him baptized, and pictures of his daddy and me holding him. Very therapeutic. The staff at the Mayo Clinic were wonderful. I got to keep the hat and gown they dressed him in, and the sea shell he was baptized with. Also, I have his birth certiicate, and his footprints and handprints. Alot of momento's, I just wished I could have kept him, but it was not meant to be. I told my 4 and 6 year old at that time that God needed a baby in Heaven. I also believe I know who will be meeting me at the pearly gates when I arrive there. If this helps you at all in this sad time, then the heartache I suffered for Landon and Ethan was very much worth my time. Prayers, hugs and kisses.

The diagnosis changed, but the end result is the same.....defects not compatible with life.  Dr said it's not anencephaly since there is a skull, but there is no frontal lobe, and they also detected a heart defect and possible facial & limb defects.  He suspects Trisomy 13 or 18 & wrote the word holoprosencephaly which I think is associated with one of them.

Both the dr at the hospital and my own obgyn think I should have a D&E.  My dilemma is that I feel like I need to be somewhat at peace with the decision I make & can't say that about that choice.  My husband thinks that would be best because they expressed that is what is best for my health, but I don't care about that right now.  I feel that I need to see my baby, I want to name her, right now I don't feel like I will get any closure doing it the way they recommend.  My obgyn says going throught the process of induction & seeing the baby with the defects would be very tramatic & dh is afraid of that.....but what is really the lesser of two evils?

Evelyn, I appreciate you sharing the story about your boys.  I think your experience with them was nice.  And it must have been nice to have a dr on your side.  I don't feel like I have anyone on my side right now.

Helene, I will log onto that site soon.....thank you.  And thank you everyone for your thoughts and prayers.

over on babycenter there is a considering termination for medical reason board Please please check it out before you make any decisions about D&E. I lurk there all the time. My heart is breaking for you and your family. Please check in when you can. you can email me at ptroup@verizon.net if you need someone to talk to.

That is exactly where I have been spending all of my time over the last 24hrs.  I am reading every entry on both the L&D & D&E sides of things.....it's alot.  Dh questions if it is really helpful reading it because I sit here & cry the whole time, but my answer to him is yes.  Thank you for referring me there Helene. 

Just a story to share, I dont want you to base your decision on this, not everything turns out the same way. 

 

I was just sharing your story with my friend and she told me her aunt had a diagnosis of the same thing at about 5 months along. She chose to keep the baby to term and her and her family prepared for the worse, never getting any baby things or a nursery put together. They were told she wouldnt survive through delivery. When she was born they discovered that she had more skull than thought, and not only did she live through labor, but for the next couple days they prayed for a miracle, and they got it. She stayed strong, and they were able to close the skull and then focus on her severely deformed cleft pallet. Today she is almost 2 and they sais she wouldnt live to be 1. Mentally she may never be 100% but she is still growing strong.

 

I know you may have a different diagnosis all together, and I just want you to know that you are not the only one who has had to make this dfficult decision. I pray for your family and hope that everything that is meant to be will be! God Bless! 

I hope your doing "okay" I once had to choose between life and letting them pass with out pain... my dd#1 was born with a congenital heart defect. The first time she was diagonsed it was NOT good at all... the dr was horrible first of all but found all types of stuff wrong with her... we went for our 2nd ultrasound someplace else because the dr had horrible bedside manners and basically walked out on us when we said we didn't know if we should terminate or keep her she was REALLY pushing for termination that DAY! we told her we needed time to think about it... thankfully she was found not to have as horrible (if that could be) of a defect as the first dr found (my 2nd dr was VERY mad at our first) That is why you always SHOULD go for another ultrasound ect ect when something is wrong.  I'm sorry your 2nd ultrasound didn't go the same way... :( I hope your okay.

If you feel like you need to see your baby and you are prepared for any physical deformities that may exist then deliver the baby. Your Dr and husband, no matter how well intentioned cannot tell you what is best for you. Only you know that. You are the one carrying the baby. You are the one that feels the movements inside your body. Maybe it will actually help to see the baby and know what a struggle life would have been for her and that she is in a better place with God. I am sorry that this is happening to you and I pray that you find peace.