Jackson's Story - Congenital Diaphragmatic Hernia (CDH)
Write here…December 12th 2017, 23 weeks pregnant, is a day my family and I will never forget. We were at our follow-up anatomy scan when the tech said “I need to go get the doctor.” It was at this moment I knew something was wrong. The doctor came into the exam room and confirmed my fears, “I have some serious concerns.” Jackson was diagnosed with right-sided CDH. We were immediately referred to another hospital for the confirmation of his diagnosis.
On December 14th, my parents and I met with the Advanced Fetal Care team at University of Maryland Medical Center. Treatment options and statistics were discussed. We were told that survival rates are 50% nationally for CDH and right sided was considered more severe. We were also informed that this hospital only treats 2-3 CDH babies per year, and whoever is on call does the repair surgery, regardless of CDH experience. Termination was discussed, (and continued to be brought up for the next few weeks). I knew at that moment that this was not where I wanted to deliver Jackson!
I spent the next few days crying uncontrollably, but this is also when my mother and I began our extensive research. We considered all the “local” hospitals, (UMMC, Johns Hopkins in Baltimore, and CHOP). I reached out to friends who are NICU nurses at CHOP and was ready to make the call for a consultation when I joined the Facebook group that led me to Dr. Kays and his team at All Children’s in Florida. My doctor in Baltimore warned me to “be careful of his statistics, there’s typically a reason a hospital has such high numbers,” insinuating that Dr. Kays only takes the “easy” cases.
Despite being told this, I requested a consult, and with the help of Joy Perkins and Tiny Hero, my parents and I were on our way to Florida to meet Dr. Kays and his team in early February. After 2 days of MRI’s, ultrasounds, and echo’s, we had our consultation. Dr Kays met with us for several hours, explained his treatment methods, explained CDH and the difference between left and right sided, and asked my parents and I questions about ourselves to get to know us. Then he gave Jackson a 95% chance of survival! And at the end of the consult, he hugged me. That was all we needed. My mother and I decided after that first consultation we were relocating to Florida for Jackson’s birth and repair surgery.
Fast forward 3 weeks, 2/27, just 4 days before we were set to move to Florida, just 3 days after an overnight admit to the hospital due to contractions, Jackson was born 6 weeks early. All of my fears were realized and I immediately contacted Joy. She made no promises, but told me if there was a way, they would try to come get Jackson and transport him to Florida. Meanwhile back in Baltimore, Jackson had a rough second day of life. First, his ventilator malfunctioned and it took the nurse and respiratory therapist what felt like hours to stabilize him. Then throughout the night, his condition deteriorated. His blood pressure, heart rate, and oxygen all dropped dangerously low. The decision to put Jackson on ECMO was then made Thursday morning. I thought this was it, there’s no way we were getting him to Florida now! But I didn’t give up hope! I had continued to be in contact with Joy to give her updates. I informed the team at UMMC that I planned on transferring Jackson to Florida. They were resistant to the idea at first, but after talking to Dr. Kays and his team were agreeable and ready to help in any way they could.
Friday morning I got the call from Joy! “We’re coming to get Jackson.” Dr Kays decided to make the trip to Baltimore at the tail end of a nor’easter to transport my critical baby on ecmo, back to JHACH.
Dr. Kays and his team arrived Sunday afternoon in Baltimore and spent 4+ hours preparing Jackson for the flight transferring ecmo and vent machines. Dr. Kays was also concerned about the freezing temperatures and keeping Jackson warm enough during the transfer but the team was successful! They made it back to JHACH shortly after midnight Monday morning, and I was right behind them, coming in at 1 am. Jackson appeared to look better almost immediately! His swelling was decreasing and his coloring was improving. Over the course of the next few days, Jackson had stabilized, was weaned off ECMO, and had his repair surgery. He was then transferred to the NICU and a few days later was extubated and I finally got to hold my baby, 18 days after he was born!
We were discharged from the hospital after 53 days! Then we spent an additional 2 weeks in Florida making sure Jackson was gaining weight. My parents, Jackson, and I made it home May 6th and Jackson has been thriving ever since! In fact, as of June 6th, Jackson has gained 4lbs since discharge, weighing 10lbs 7 ounces!
I know in my heart that I made the right decision to transfer Jackson to Dr. Kays care. It was a risky decision, but I believe he not only survived, but also thrived, due to his expertise and the amazing team surrounding him! I will be forever grateful to Dr. Kays and his team that saved my baby’s life!