Lucy Jane's Story - Congenital Diaphragmatic Hernia (CDH)

At 28 weeks gestation, I was told that my unborn baby had a Congenital Diaphragmatic Hernia (CDH). This meant she had a hole in her diaphragm and the organs below her diaphragm could go up through the hole and into her chest cavity. They would then take up the lung space and impede them from growing. As well, the organs pushed the heart over to the right side of her body.

We lived in Dallas, TX at the time and knew we needed to find the best doctor and hospital in the country to deliver our baby. We found UF Health and Dr. Kays pretty quickly and knew that’s where we would go. We arrived in Gainesville 1 month before she was born in order to see the doctors throughout the month and make sure we were in town when she was ready to come.

I was induced on November 7th and on November 8th, 2011 she made her appearance into the world. I gave birth in an operating room at UF Health at Shands Hosptial, because they needed so many doctors and nurses to fit in the room. We were told that she would not cry when she came out because she wouldn’t have much lung capacity. But as it turns out, she’s a fighter and the first thing we heard when she came out was a cry. They rushed her off to the side of the room and started to work on getting her intubated and set up on a breathing machine. Then rushed her off to the NICU. Dr. Kays and his team got her stable and let her rest for a day and recover from birth.

On day 2, she went in for surgery to repair her diaphragm and see how much lung tissue she actually had. They found that she had 80% of her diaphragm, 70% of her left lung, and 100% of her right lung. Because she had a good amount of her diaphragm, they were able to stitch it back together, rather than getting a patch. Over time, her heart moved back to the correct position in her chest. After surgery, she continued to be on a breathing machine for another 8 days as she learned how to breath on her own. In a 24-hour period, the doctors took her off the breathing machine, put her on a c-pap, took her off the c-pap and put a nasal cannula on her. At 10 days old, we were able to hold her and feed her for the first time. A few days later, they moved her into the step down NICU to learn to eat and gain weight.

While still in the NICU, they performed a MRI on her to get her ready for discharge where they found a blood clot in her brain. A few days later, they did another MRI and it showed that the clot had changed slightly in size. They felt like over time the blood would find alternate routes around the clot. She was released from the hospital at 3 weeks old with no supplemental oxygen or feeding tubes! This is a big feat for babies with CDH. We ended up going for a check up MRI 6 weeks later to see if her blood clot had changed, and at the appointment they told us it had completely dissolved. We truly believe Lucy Jane is our little miracle, and we know that God has used her and her story to share His love to a lot of people.