“It's not a death sentence” - Claire's Story

Claire Elizabeth, our third child, was diagnosed with CDH at a 24 week anatomy ultrasound. We were at a satellite office of the fetal medicine doctor, so the fetal medicine doctor told us the news over the phone. I remember him saying “its not a death sentence.” The rest of the conversation was a blur. I blamed myself for the defect and stayed up many nights wondering what I had done to cause the problem. We soon learned that our local hospital in Huntsville, Alabama, did not have the capability to treat Claire, so in order to save her, we would have to relocate our family of four to a different city. We spoke with surgeons at three different hospitals all over the country - none of the news we learned at these 3 consultations was good or gave us much hope for baby Claire. Furthermore, while these surgeons might be able to save our baby, it was unclear to me what Claire’s quality of life would be after discharge. In frustration, I posted on a Facebook group about our search for treatment, and a former mother of a Dr. Kays baby contacted me. She and I spoke for an hour and in a few week’s time we were on our way to Florida for our consult, where we ultimately relocated and delivered Claire. We relocated to Florida the week before Christmas 2014. I delivered Claire in front of a team of medical personnel a few weeks later. Claire’s hernia was severe, so she was immediately intubated. Claire had her first surgery at 12 hours old, and was placed on ECMO shortly afterwards. She was on ECMO for 6 days, during which time she suffered a stroke. There were several moments where I questioned whether she would make it, but Dr. Kays and his team remained incredibly positive. After 67 days, Claire came home on oxygen and mostly tube fed. I had no idea what to expect of this baby I had barely held. To be honest, I was little scared of her!

Claire is now 17 months old, talking, eating all food by mouth, and walking! She is the happiest of my three children. She adores her brother and sister, and acts very much like a typical toddler! Claire goes to weekly physical and occupational therapy which has focused on developing her core strength and combatting any gross motor delays she has due to the stroke. She has made tremendous progress and is meeting most milestones! She is monitored by a local neurologist, gastroenterologist, and pulmonologist because we are so far from Florida. All of these physicians have been shocked by how well Claire is doing and believe she is an anomaly, even though I can attest many of Dr. Kays babies are doing just as well if not better! Claire is on no medications or supplemental oxygen. Every day we have with her is a gift, and she has absolutely changed my perspective on many of life’s challenges. We owe her survival and amazing quality of life to Dr. Kays and his team.

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