HELLO,any one have a child with alobar holoprosencephaly

Hadeel - posted on 06/26/2009 ( 9 moms have responded )

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HELLO EVERY ONE,THIS IS VERY HELPFUL CIRCLE ,MY CHILD 5 MONTHS NOW WAS DIAGNOSED TO HAVE HOLOPROSENCEPHALY ALOBAR WHEN I WAS PREGNANT,WANT TO KNOW AND TALK WITH OTHER MOMS WHO HAVE THIS CASE WITH THEIR BABIES,TO KNOW THEIR FUTURE WHAT TO EXPECT,HOW TO DEAL,REALLY I NEED U HELP.WAITING FOR U REPLY THANKS.

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Melissa - posted on 06/26/2009

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i just looked it up...i will pray for you and your child....is it severe?

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Julie - posted on 05/11/2013

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Hello I'm 11 weeks pregnant and we just found out that our baby has severe HPE. It has taken use 7 years to get pregnant. And to found this outIs ver devastating. Did yalls ob doctor referr yall to a perinatal doctor for a 2nd opinion? How did yall go about this?

Serina - posted on 02/27/2013

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Hello im currently 20 weeks into my pregnancy i recently been told that the child i am carrying has severe alobar holoprosencephaly i also was told that she has eyes that are closely together a very flat nose and a cleft lip i decided to try and go full term i was just wondering how all you other Parents are dealing and how is your child now just looking for support.

Lisa - posted on 10/10/2012

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Hello, My name is Lisa and I am a nursing student in Michigan. I am currently doing a clinical rotation with a pediatric hospice nurse. One of our families has a child with alobar HPE. They are interested in connecting with other families who have been touched by alobar HPE, as they have. If you could let me know if you are interested, I know they would appreciate the connection and understanding of someone who understands what they are going through. Thank you!

Clare - posted on 06/18/2011

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I found out June 1st my daughter has Alobar Holoprosencephaly. Im currently almost 22 weeks. Im not sure how to handle everything anymore. How did you handle it when you found out? My obgyn isnt supportive of my decision to go full term and i feel very alone without his support.

Hadeel - posted on 06/26/2009

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thanks Abby,sure i will enjoy every moment with my baby,she is a gift from God ,keep me and my baby in u prayers,thx

Abby - posted on 06/26/2009

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i just read up on holoprosencephaly, and im so sorry, just be grateful for every second, she's done sooooo well so far!!! xxx

Abby - posted on 06/26/2009

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i have NO idea what ur going thru or even what to say, but just that u and ur little one are in my thghts and please just enjoy every second with her!!!

just make sure she's comfortable and a happy baby! xxxx

good luck with everything, abby and cam xxxx

Hadeel - posted on 06/26/2009

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Thanks Melissa,yes it is so severe as doc did not expect my child to live long ,but she is still alive thank God,she is NOW months ,but she has many problems in her brain,facial deformities,diabetes insepidous,mental retardation,she always have fever and seizures also i gave her 3 medications for her seizures but still happening too much every day .she is my little angel.what about u??

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