Two and a half years ago, my niece was born with a life-threatening birth defect called
Congential Diaphragmatic Hernia.
Today, about 1/3 of state's governors have declared today Congenital Diaphragmatic Hernia Awareness Day. It's hard to believe that a birth defect that affects more live births than cystic fibrosis (about 1:2,500 for CDH vs about 1:3,500 for CF) is hardly known outside of those who have been directly affected by it.
So I'm doing my part out of love for my sister and my niece to spread awareness. The mortality rate for CDH is approximately 50%. That means one of every two babies born with CDH will not survive. There is no known cause, no specific gene, no way to prevent CDH. It's just something that happens around 7-8 weeks gestation because for whatever reason, the baby's diaphragm doesn't close. We were extremely lucky that, despite not knowing my niece had CDH before being born (it can often be diagnosed via ultrasound), she was able to have surgery at two days old to put a patch on the hole and move her organs back into her abdomen. She is now a thriving 2.5-year-old with few side effects from the CDH.
If you get a chance, read my sister's
blog entry for today. Comment and she'll send a book to
Connor's books. Read more about CDH online. If you're the praying kind, pray for those children and families affected by CDH. Hope for more success stories, like my niece's.
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