Luke’s CDH Story
I received Luke's diagnosis at my 22-week sonogram. It was missed at our anatomy scan, but since I had a high-risk twin pregnancy, I was already getting sonograms every two weeks. I will never forget that day. My husband stepped out to take a phone call, and the ultrasound tech kept reviewing what looked like a black hole on baby B (Luke). My stomach sank. I knew something was wrong. My husband came back in the room and, the second the ultrasound tech walked out, I said something is wrong. He calmed me down as we waited to see the doctor. "Baby B has what appears to be CDH… this is a big deal". He told us he had a 50/50 shot, that I needed new doctors and a surgical team, and that their hospital was not equipped to handle this diagnosis. He handed us tissues, and we made the somber walk to check out.
I went home and began to research, which, in turn, caused multiple anxiety attacks. It took a solid two weeks before I could actually research without having a full meltdown. Upon my research, I found Dr. Kays. I pretty much ruled it out, as it would just be impossible. I was pregnant with twins, and the thought of moving away from home and having a newborn and one in the NICU felt impossible! One day at work (I'm a hairstylist), I was talking to one of my clients, who is a nurse, about Luke's diagnosis and Dr. Kays, and she urged me to join a support group. That is how I found Tiny Hero. I posted in the group asking if anyone had relocated to Dr. Kay's and I got SO MANY responses. Pictures of beautiful and healthy babies, toddlers, and children. For the first time, I felt real hope. I thought joining a support group would be somber and sad, but it was quite the opposite. It was everything I didn't know I needed.
After my post in the group, I waited for my husband to get home from work, and I showed him story after story about babies who were given horrible prognoses and survived. We sifted through so many stories. I told him that if the worst-case scenario were to happen, I wanted to be in what I thought was the best place, and that was with Dr. Kays. He told me that we should still meet with Children's Dallas as it is a well-known hospital, and if Luke's prognosis isn't bad, then we should stay and be treated locally. I agreed and we waited for our meeting with Children's. Another meeting I will never forget.
We met with the surgeons at Children's over Zoom. They looked at the last sonogram I had and told me that Luke's chances of survival were less than 30%, that he would need ECMO, but he would probably be too small, and if he wasn't, I should think about if I wanted to put him on it because it would be prolonging the inevitable. I asked if they needed an MRI or an ECHO, and the surgeon leaned back in his chair with his arms behind his head and said, "Nah, I don't need it." I sat in that meeting with my list of questions I printed from Tiny Hero, and I never needed to ask a single question. They raised every red flag within the first five minutes. I knew I would not trust them, even with a broken pinky toe. We were done.
We began working with John Hopkins to figure out what type of insurance we needed to be treated. Once that was squared away, it was official! I flew to Florida to have my MRI and ECHO and to meet Dr. Kays. Funny enough, Dr. Kays was sick when I arrived, so I had to wait two weeks to get the results of my MRI. That felt like a lifetime. We met with Dr. Kays over Zoom and he told us that he believed Luke's case to be right in the middle - not severe, but not easy. He gave him a 95% or higher chance of survival and did not expect him to need ECMO. I immediately burst into tears. He said, "Tell me why you're crying." I explained to him that our local hospital told me he would die, and I will never forget his words. He said, "I fully expect you to take a healthy baby home with you."
At 31 weeks pregnant, I kissed my husband goodbye at the airport and sobbed my way through security to relocate from Dallas to Florida. He had to stay in Dallas to continue working, but with the support of our community and some amazing donors, we had enough money for him to fly down every Friday and fly home every Sunday. We welcomed Luke and Carroline into our family at 37 weeks and five days. Carroline was born first, and Luke was whisked away quickly by the CDH team.
Because of the CDH unit's private setup, I could visit every day with Carroline, which was a huge relief. Luke had his repair surgery on his fifth day of life. His left lung was flattened like a pancake, and his hole was small enough to be sewn back together and did not need a patch. We spent the next couple of weeks weaning off the ventilator and CPAP. This part seemed to fly by, and we were excited to start feeds. Luke, not so much. He was very uninterested! We spent weeks and weeks and weeks working on feeds. Finally, we decided to opt for a G-tube as we were ready to be home. Once we got the G-tube, it was just a matter of a week, and we were being discharged to come home!
Luke is now eight months old. He is a tubie graduate and doesn't need oxygen. I am so thankful for the care we received at John Hopkins. The entire CDH team on that floor is incredible. I will never forget them. I am also so thankful for the Tiny Hero community and the hope I received when I had no hope.
