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does anyone know someone who knows someone who has survived with Congenital Diaphragmatic Hernia (CDH).

Some very dear friends of mine have just been given a diganosis of CDH and perhaps Downs for their 24 week fetus, they are needless to say, devestated. I was hoping to find some other HP's out their who might be able to give them some hope, sometimes hearing it from another Mama or Papa who has walked road makes all the difference.

I have lots of down's info to give them but all the small people I know who have had CDH have not made it.

thanks
J.

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Permalink Reply by Karen Gerstenberger on November 10, 2009 at 10:31am

I know a family that are doing well with their one-year old daughter who has this. Their blog is http://www.zoehenry.com/. I hope this helps!
Karen G.

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Permalink Reply by J. on November 10, 2009 at 10:39am

thanks, I was just reading your blog when the email came in - what timing!

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Permalink Reply by Pia on December 28, 2009 at 7:17pm

J-
I hope you have found some good resources for them. I am a NICU nurse and I have seen many children survive this condition. There is reason to hope, especially since it is a known condition. Hopefully they are under the care of an experienced perinatalogist and are delivering at a hospital with a Level 3 NICU. I wish I could give them more assurance, but I cannot. It really can be a case-by-case thing. But with a good pediatric team there is reason to be hopeful. Good luck!

pia

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Permalink Reply by Cristin on January 1, 2010 at 11:52am

My son is an almost 7 year old Congenital Diaphragmatic Hernia survivor...

My blog:

http://www.cdhmomma.blogspot.com

cristin