Samuel's Story - Congenital Diaphragmatic Hernia (CDH)
Samuel was born April 27, 2015 at UF Health Shands Hospital. Our family is from the Tampa Bay area and we decided that going to Dr. Kays in Gainesville would be the best option for Samuel. From the second we met with Dr. Kays and Joy, we knew that they were the best chance of survival for our son. Dr. Kays sat with us during our consult, really wanted to get to know my husband and I, asked us our son’s name and then always called Samuel by his name. He personally walked us around the NICU, explaining to us what it would be like once Samuel was born. He gave us the hope that our son would be ok and the strength to keep moving forward. When the insurance denied us to go to Gainesville, Dr. Kays got on the phone and helped them understand why he was the ONLY option.
With the doctor’s plans to induce me on May 3rd, Samuel decided he wanted to come a week earlier instead. My water broke while still at home, and we jumped in the car for the three-hour ride to get to the hospital.
Samuel was born with LCDH. His stomach, spleen, small and large intestines were in his chest cavity. His heart had completely shifted to the right where his right lung was growing. Dr. Kays suggested we wait to do surgery so that Samuel could stabilize after the trauma of delivery. He said he did not believe he was at any risk for ECMO and did not see waiting to do the surgery to be an issue. We trusted him and agreed. Those next few days were the longest days of our lives (so it seemed). Watching your newborn baby lie there with wires coming out of every end, a breathing tube down his throat, and you're being told not to stimulate the baby. But you remain strong because you know he can feel your energy. He always knew we were there in the room. He would react to my husband talking or to my laugh. He knew mommy and daddy were there with him.
When Samuel was 5 days, old Dr. Kays decided it was time to do the surgery. The surgery took approximately 4-5 hours (honestly it felt like forever) and periodically Joy would come out and let us know all was going well. After all was said and done, Dr. Kays sat down with us and explained what he found. He explained that Samuel was missing 30% of his diaphragm but that he was able to stitch it up (no patch) and that he only had about 15% or so of his left lung. The heart instantly moved back to where it needed to be as well. Now we just waited for Samuel to make the next move. When in the NICU, you will often hear the doctors and nurses say “It’s up to the baby.” When will we go home? When will he be weaned from the ventilator? When will he start eating? These are all things that are left up to the baby, so to speak. There is no protocol, and there are no timelines during this whole process. It’s a lot of sitting, waiting and monitoring. As a mom who has her life "planned to a T," this was very hard from me to understand.
After about two weeks, they began to wean Samuel from the ventilator. By 15 days old, he was on high flow oxygen and I was able to finally hold him! A few days later, we were able to start feeding him.
Samuel spent 7 weeks in the NICU and came home on a very low flow oxygen. He remained on the oxygen for another two months before being taken off. Samuel is turning one tomorrow and I still cannot believe a whole year has gone by. He is sitting on his own and crawling (things the therapists said when we first got home that he would take a long time to do). He is the happiest baby you will ever meet and loves to cuddle! We are so very blessed he picked us as his parents!
