Anya Mae's Story: Day 37- Please help spread support of CDH research bill!!

Monday, July 23, 2012

Day 37- Please help spread support of CDH research bill!!

Anya had a nice, slow, stable day, her vent settings went down a little. This is a blessing and we will probably see many more days like this.

So today I am going to take time to discuss an important step in the history of CDH awareness and research. July 18^th Senator Jeff Sessions formally introduced a $50 million Congenital Diaphragmatic Hernia Research Bill on the floor of the U.S. Senate. Senator Sessions is personally affected by CDH as his grandson was born with CDH, he was treated successfully by Dr. Kays. As I have written before, CDH is not well researched, even though it has the same occurrence rate as spina bifida and cystic fibrosis. More awareness and research is needed. Due to lack of understanding of CDH many doctors counsel mothers to terminate their pregnancy. Even if termination is not encouraged like in Anya’s case, parents often are given a dire prognosis, nationally only 50% of CDH babies survive. As we have seen with Anya Mae, miracles can happen in the care of a doctor who is more knowledgeable like Dr. Kays. The approval of this research bill will be an important first step in improving CDH care nationally.

The month after Anya’s diagnosis I cried every day. I cried because my child was given no chance, in her doctor’s eyes, that she could live. I am moved to tears again when I think of the other parents who struggle like I do with this diagnosis, but in the ABSENCE of proper diagnosis and treatment options. Please join me in supporting this bill by contacting your senator asking for their support. Follow this link:

http://www.cherubs-cdh.org/bills/

There is a video of Senator Sessions presenting the bill, telling the story of his grandson’s CDH journey; Dr. Kays is mentioned at the 6:50 minute mark. To the left there is a link to find your congressman, please contact your senator as well! Please share this on your facebook page, blog, email, or good old fashioned conversation. Thank You!

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Summary of Anya's story.

Anya was diagnosed at my 20 week ultrasound with congenital diaphramatic hernia. Over the course of about a month multiple tests were done to determine how severe her case was. A group in St. Louis told us since her head-to-lung ratio was at 0.8, with three being normal and lower than one being severe, she would not have much chance at survival. In fact, one doctor said it would be 'ethically optional' for us to attempt treatment; she was so severe that any treatment would be futile.
Doing research online I came across Dr. David Kays, a pediatric surgon at the University of Florida in Gainesville. Babies under Dr. Kays care have a 90% chance of survival. Nationally the survival rate is 50%. We flew down for a consult and he did agree that her CDH was severe, and he offered us no promises, but he thought she might have a 65% chance at survival.
We relocated to Gainesville the 36th week of pregnancy and I was induced in the 37th week. Anya's CDH repair was done the morning after she was born; there was a very brief window where she was stable enough to be operated on. Only hours after surgery she was put on ECMO, Dr. Kays had spent the entire day with her, guiding her care.
Anya was on ECMO for 30 days; during this run she had a bleed in her chest and needed a thoracatomy to remove it. She improved after the thoracotomy and was able to come off of ECMO.
Weaning Anya off the vent was a big challenge. She was extubated three times before she was successful. After the second failure she had a nissen fundoplycation and a g-buttton to treat reflux, the thought was that if she was able to digest feeds her lungs would be stronger.
She is still working on overcoming the CDH issues. She still uses a G-button to make sure she gets enough calories. She gets speech, PT and OT but is well on her way to catching up.
Adam, Arwen, Anya and I thank God for all of the blessings he has provided on this journey: family and friends who have been extremely supportive, the fantastic staff at Shands, and of course Dr. Kays as well.