Our Journey With CDH- Finding Dr. Kays

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• published: 03 Mar 2015
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***(NOTE: Dr. Kays is now at All Children's Hospital (Johns Hopkins Medicine) in St. Petersburg, FL.)*** To read more about our experience with Dr. Kays, and Adam's CDH, visit: http://www.caringbridge.org/visit/miracleswithadam Find us on Instagram/Facebook at tinyheroorg Finding out you are going to have a baby born with CDH is shocking and devastating. Searching for the right place to have your CDH baby is overwhelming and stressful. Please read and watch our story; a message of real hope for CDH babies, and how we found an amazing CDH doctor named Dr. David Kays. For more information you can email: tinyheroorg@gmail.com. Dr. Kays has moved to All Children's in St Petersburg, Florida. On January 24, 2014, our little family went to a routine ultrasound appointment to see our 6th baby in motion, and confirm we were having a boy. We were surprised and shocked to find out he would be born with left-sided congenital diaphragmatic hernia, which happens in about 1 in 3,000 births. About 10 days after diagnosis, we found out that along with his stomach, intestines, and spleen, Adam's liver was also (up) in his chest, and that his chances for survival had now decreased to 20-30%(liver up, LHR less than 0.75). Babies who have their liver down have over 90% survival. The national overall survival rate (combining liver up and down cases) is only about 50%. We began a whirlwind 8 weeks of diagnostics, phone calls to hospitals across the nation, research, and long conversations as a family to decide where and how to best care for our son. After much research, divine intervention, and lots of support we found Dr. David Kays and his wonderful team, at UF Health Shands Children’s Hospital in Gainesville, Florida. We consulted with top rated, nationally recognized hospitals, but there was such a glaring stark contrast in their approach vs. Dr. Kays. Dr. Kays is a gifted surgeon, who has a deep, personal interest, and dedication to CDH babies in his care. His continuity of care was unprecedented- he was the only one in charge of Adam from the day he was born until discharge. The NICU team was also exceptional, and several nurses and therapists were well-trained with extensive experience when it comes to CDH babies. They also have a dedicated NICU pharmacist who pays close attention to the pharmaceutical, as well as overall medical needs of the babies. Thankfully, our insurance plan was fully accepted. Adam was born about full term, on June 2, 2014, with a team of numerous people, as well as Dr. Kays, in the room to administer immediate life sustaining care. He was as severe as predicted and the decision was made to have his CDH repair done on the day he was born, when he was about 6 hours old. This was an aggressive move, but knowing he would almost inevitably need ECMO, it was the right choice. It was a long and complicated surgery; he only had about 5% of his own diaphragm on his left side. They were able to keep Adam off ECMO for 72 hours after surgery, which was a huge win for our team. We know this was due to not only our's and Adam's will to fight, but also because of such an amazing doctor, nurses and team of people caring for him. Adam spent 23 days on ECMO, and then was able to be weaned off the ventilator to CPAP a week later, at 5 weeks old. Tests showed he had severe reflux, as expected, and getting him to eat was the next hurdle. He had a Nissen and G-Tube surgery when he was about 8 weeks old, and was then finally able to eat. Mom pumped breast milk all that time, and Adam was able to successfully breastfeed at 9 weeks old! We took Adam back to our home state of Utah after 90 days in the NICU where he continues to thrive in a loving home environment full of the sounds of family life. He is still on oxygen, but we plan to wean him off over the next several months. We feed him through his G Tube at night to get him extra calories for growth, and he both breast and bottle feeds during the day. We have an incredible amount of gratitude for Dr. Kays, Joy Perkins, and the amazing people in the hospital who cared for not only Adam, but our entire family during our stay. Much gratitude to The Bartam Apartments for "the CDH apartment," and giving us a home away from home. Our hearts go out to all CDH families everywhere- we are all victims and survivors in one way or another, and the heavens are filled with too many CDH babies who left this life too quickly. We know God’s hand is in the details of our lives, and praise Him for guiding our every step in this journey. To read more about our experience with Dr. Kays, and Adam's CDH, visit: http://www.caringbridge.org/visit/miracleswithadam Find us on Instagram/Facebook at tinyheroorg Much gratitude to Drew Holcomb and the Neighbors for their permission to use their beautiful song "Live Forever". Buy it on iTunes!!