Finley's Story - Congenital Diaphragmatic Hernia (CDH)

Finley Cate Higgins, born 4.27.15

“You already have three healthy children. You should consider your options.” I was 19 weeks pregnant. After an ultrasound technician silently taking picture after picture of our baby girl in the womb for what seemed like an eternity, the perinatologist walked in. We had been sent to him because, during my anatomy scan, my OB noticed that our baby girl’s heart was shifted. He didn’t bother to sit down. He told us, “Your baby has a congenital diaphragmatic hernia. Hers is even more rare because it is right-sided.” We asked what this meant, if it was fixable with surgery. He was very grim. He told us that our baby might need ECMO, that ECMO was bad, and that if she were to even survive, she probably wouldn’t have much of a quality of life. He told us that after his long weekend, he would see if he could get in contact with someone at Arnold Palmer Hospital for Children to get more information.

We left his office, tears streaming down my face, my husband holding his back and trying to be strong for me, and knowing practically no more about CDH than before we had walked into that office. We never did hear back from that doctor. When we got home, I did some Google searches for info, and it sounded bad. I shut down. My husband immediately began researching, and he found one name that kept popping up, one doctor that everyone raved about: Dr. David Kays. I remember staring at a picture on the Real Hope for CDH website. It was Dr. Kays watching over a baby, and thinking to myself, “This man looks like a guardian angel.” The next day, my husband emailed Dr. Kays. To our surprise, Dr. Kays emailed back two hours later, giving us hope right off the bat, and asking for our contact information. He called us that very night and spent an hour on the phone with both of us, answering all of our questions, telling us about HIS survival odds, his methods, and gave us an idea of his prediction for our baby girl. I will never forget one of the first things he asked me. “Does she have a name?” and I told him. Finley. From that moment on, Dr. Kays always referred to Finley by name. That meant so much to us. The next day, Joy, an absolute godsend, called us and we began the process of scheduling appointments. 

When we met with Dr. Kays, he gave us a 91% chance of survival. Because Finley was right-sided, he told us that LHR was not something we should put much stock into because RCDH is just “different.” And so I cannot tell you what her LHR was because I don’t remember the precise number, just that it was right around 1. I believe it was right under. Her liver was up, but that is to be expected with RCDH. He explained to us what ECMO was and how it worked, in the event that she might need it. He spent time with us, answered every question, and we knew without a doubt that he was the doctor for Finley. At 36 weeks pregnant, we relocated to Gainesville, where Dr. Kays was at the time. I was induced at 38 weeks. We spent a total of five months, three hours away from home and our three older children (a girl and twin boys). They were still in school, so they stayed with my parents and were brought to visit whenever possible. It was hard, but it was what we had to do, and it was temporary.

Finley Cate was born much more severe than expected. She was placed on ECMO about eight hours after birth, and she spent a total of 33 days on ECMO, which consisted of two runs. She just was not able to remain off the first time she was taken off, which was a huge blow and incredibly scary for us. Dr. Kays put her back on, giving her the additional time that she needed. While on ECMO, Finley encountered quite a few complications. When she was just a few days old, things were looking very grim. She started going into renal failure and was putting out practically no urine. She was bleeding out of her mouth, her nose, and her bottom. The cause was unknown. Dr. Kays decided to run the ECMO machine without Heparin, which is what prevents blood clots (one of the biggest risks of ECMO), to try to stop the bleeding. That was the first time it had been done, but he knew that despite the risks, she needed it. That night, things turned around and she started peeing up a storm. After a couple days without Heparin, the bleeding stopped. At one point, it was found that Finley had an intraventricular brain bleed. Dr. Kays did not pull her off ECMO, because he knew she wouldn’t survive. Instead, he continued on, and we hoped for the best. Finley was finally stable enough to have her repair surgery at 16 days old, during which it was found that her stomach had perforated (another first), which was the reason for the bleeding. Dr. Kays repaired her stomach, and she was left with about half of a stomach. Finley was missing 97% of the right side of her diaphragm and a Gore-tex patch was used to close it. She only had 15% of her right lung. It took 33 long days, but when she came off ECMO for the second time, she stayed off! During all of this, Dr. Kays made sure that her brain was closely monitored and that everything possible was being done to preserve her brain because quality of life is just as important to him as survival. 

It was a rollercoaster, to say the least. With Finley, it seemed like she had to do everything twice, sometimes three times. It seemed like every time we would take one step forward, we would take two steps back. The CDH rollercoaster is rough, but you just have to keep your eyes on the prize: taking your baby home. After 134 days and having the Nissen procedure and a G-tube placed, she left the hospital on oxygen. One of the best parts? Her exit MRI showed no brain damage! She left the hospital 100% tube fed. She came home on quite a few medications for pulmonary hypertension, reflux, to help her keep fluid off, and a couple others. It took some getting used to the tube feeding and medicines, but in a short time, we got our routine down. At six months old, Finley was able to come off oxygen. Her medications began to be weaned. We worked hard with her, and within a few short months, she was eating completely orally. And she was able to have her G-tube taken out right before turning ten months old! Today, she is no longer on any meds. 

Before Finley was born, I was absolutely terrified of ECMO. I did NOT want her to need it. And that’s normal, to hope your baby won’t need it. But let me tell you, I am so thankful for ECMO. Of course you hope it won’t be needed, but when your child DOES need it, it is literally a lifesaver. If not for ECMO, if not for Dr. Kays being the one making every decision regarding her ECMO, we would not have Finley today. Look at the pictures of Finley. Look at what 33 days on ECMO looks like. Perfection. 

Finley just turned two in April! After leaving the hospital, she caught up remarkably quickly. She was fully crawling by the time she turned one, walking just before 16 months, and these days she is running, climbing, talking, getting into everything she possibly can, and she continues to blow us away every single day. She loves music, singing, and dancing. Her older siblings adore her, and she absolutely loves them! She is so smart, funny, and she has a sweet, loving, and sometimes sassy little personality. She is a typical toddler. If you didn’t know what she has been through, you would never believe it. The doctor who said she wouldn’t have much quality of life “if she even survived” - he was wrong. So very wrong. We are thankful every day for Dr. Kays and Joy, and the incredible team run by them, who took the best care of our girl. Nobody else would have given her the time she needed on ECMO. They would have given up after a set amount of days, or pulled her right off because of the bleeding. Dr. Kays gave Finley the time that she needed to grow stronger and fight, and never gave up on her. He slept in the hospital, down the hall from her, when she was at her worst. During that critical time, he wouldn't even let the nurses change her diaper. Only he could touch her. He didn't leave her. He had faith in her. Dr. Kays knows that every CDH baby is different, and he adapts and adjusts to every curveball and every “new” situation or “first time” that gets thrown his way. Because of Dr. Kays, we have our baby girl with us today, and we are thankful beyond what words could ever express.