Trisomy 13 Holoprosencephaly

[samantha0307]

Today we found out our little girl has Trisomy 13 and Holoprosencephaly. We have opted to bbe induced. The doctors told us we would have the option of holding and looking at the baby once she was born. I am only 19 weeks along and at the ultrasound today they estimated she weighs only 10oz. I have very mixed feelings right now on whether I want to see our baby or not. Does anyone else have any advise that might make this decision a little easier?

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Thank you everyone!!
SAM

[helenamroche]

we went to get results of amnio yesterday and found out or little boy was negative to chromosonal disorders the consulant now thinks baby has holoprosencephaly have to have an mri to conform she said she doesnt think its severe or mild somewhere in between babys hearthbeat limbs and face all appear normal im very confused anyone who has been in this situation i would love to hear from you thank you

[30something13]

I hope that you DO not induce, I see a little girl who has it every week at kids time who is now over 2 years old. She has overcome all things they said she would not. She talks, runs and is a happy little girl. Her parents did nto know she was going to have it before she was born.

I also know another baby who has it who is younger but under a year, she has some problems but her parents knew ahead of time and are very happy each day they have with her.
http://lisahusmann.wordpress.com/2010/10/11/knit-in-my-womb/

this is a link to a family now pregnant with a baby the same as yours, I hope it helps to search them out!

[Heatherm4]

I'm so sorry that you have to go through this difficult time. I don't have the experience and it sounds so difficult and one person's thought might be kinda like the "out of sight, out of mind" but in this case I don't think that would work towards healing. What April said was actually really sweet and actually brought tears to my eyes. I think holding your little one would help and for that short amount of time she will know that her mommy loves her!

[whitichick]

Hi
We found out our baby had trisomy 18 and made the gut wrenching decision to be induced at 17 weeks. I was adament I did not want to see my little boy, but my husband wanted to which I was fine with. On the day of the him being born I changed my mind the nurse took him away and brought him back in a tiny little box which was all made up beautifully with his only little baby boy blanket. I am so glad i changed my mind to me he was beautiful. We took him home and showed our other 3 children so that they could try to understand.
Don't beat yourself up about it on the day you will know what is right for you. xoxo

[rbohl01]

Oh my gosh I am so sorry you are going through this. Sometimes God works in mysterious ways and just know that there is a reason that all of this is happening even though it might not feel that way right now. If I were you I would definitely take the opportunity to atleast see the baby. I would be afraid of regretting not doing it later on. She is still a precious gift from god and just know that you did nothing wrong and she tried her hardest. My thoughts and prayers are with you.
*Hugs*

[Linzola1]

I am so sorry! I wasnt sure what Trisomy 13 Holoprosencephaly was so I looked it up! I am so sorry for what you are going through and while I have never been in a position like this, my heart goes out to you. The decision you are making is a difficult one. I personally would want to hold my baby because I know how I am and would regret not doing so. I know this is a hrd thing but even getting a few pictures will make sure you remember your little princess. If you need anyone to talk to please pm me... God Bless

[April162010]

My best advice is to allow her to come to the world, hold her in your arms and thank her for trying. love her even if she stays for couple hours.

at least you got the opportunity to see her, smell her and give her some love before she goes back to heaven..that will help you to understand

of course its your choice ( iam pro choice) but if this was my case i will allow her to come to the world and I will wellcome her with open arms even for couple hours or days

god bless you and help you both!

[Majikat]

Most people that I have seen in similar situations usually decide to spend a couple hours with the baby.... Really it's your choice... Regardless the whole situation Is devestating.... You might regret never holding or seeing your baby later on if you decide not to.... I am so sorry that you have to go through this. My thoughtsare with you