Featured Patient of the Week is CDH angel Nathaniel Claes. Kelly Claes, Nathaniel’s mom, had this to share about her son:
“I went into labor with my first child on the first Friday in May 2015, three days after his due date. It was Derby weekend in our adopted state of Kentucky and the promise of welcoming our son just added to the feeling of celebration in the air on that warm and sunny spring day. My husband and I headed to the hospital not knowing we would soon face a very different kind of race, one where we’d find ourselves on the wrong side of the odds.
Ten hours after I checked into the hospital, Nathaniel arrived. It was clear within moments something was wrong. He gave two small cries and then nothing. From my vantage point, I couldn’t get a sense of what was happening. All I knew is the nurses, though calm, were doing everything to encourage Nathaniel to breathe. I looked at my husband and asked: “Is everything okay?” He is not one to panic, so the uncertainty in his voice as he said “I don’t know” only worried me further. Moments later, they calmly informed us Nathaniel needed a little help to breathe and they were taking him to the NICU. They invited my husband to follow. He later told me they grabbed our boy and ran, not walked, to the NICU where he was swiftly intubated. We were told he’d likely have to spend the night there and promised an update soon.
The time we’d been told to expect an update came and went with no information. Finally, the neonatal nurse practitioner on duty that night in the NICU came in. She was unable to hide her uncertainty as she explained Nathaniel’s heart was in the wrong place and he was behaving like a preemie, despite being full term, and they didn’t know why. She promised us the on-call neonatologist was on the way and they’d have an answer as soon as possible.
Two hours later, we heard the words congenital diaphragmatic hernia for the first time. The neonatal nurse practitioner explained Nathaniel had a hole in his diaphragm, his organs were in the wrong place, and with surgery, it could be fixed. It sounded simple enough. In the days to come, we’d learn the words “simple” and “CDH” rarely belong together.
A transport team from the local children’s hospital came to get Nathaniel in the middle of the night. He left with my husband and father-in-law following behind. The hospital where I delivered worked with my doctor to have me discharged first thing in the morning — a mere ten hours after giving birth. My mother drove me to the children’s hospital where I arrived exhausted, emotionally wrecked, and, despite having a name for what was going on, still completely lacking an understanding of what exactly landed us there. The doctors and nurses did their best to explain what we were facing but I was in no place to comprehend it yet.
The seriousness started to set in further when the nurses asked twice where we would be spending Nathaniel’s first night at the children’s hospital before gently but firmly suggesting we stay there. Around 4:00 a.m. we awoke to a knock on the door of our “sleep room” (kind of like a college dorm room — but smaller and WAY less fun) informing us Nathaniel needed life support, known as ECMO, and it needed to happen ASAP. We were ushered to a room to sign the necessary paperwork and our boy was whisked off for the surgery needed to put him on the machine.
Little more than 24 after going on ECMO, our little boy had surgery to repair his CDH. Doctors closed the hole in his diaphragm without a patch and while his intestines and stomach had been in his chest, his liver had not. These were all positive signs. He spent the week after his surgery on ECMO — for a total of nine days on the machine — all of them uneventful. This was a blessing given the complications it can cause. We sat by Nathaniel’s side, talking to him, touching him as we were able, taking pictures, seeing him open his eyes and recognize our voices, watching him get his first taste of breast milk, and feeling encouraged by his slow but steady progress. The doctors and nurses were careful not to make any promises, but we were told to expect a long stay in the hospital. It certainly seemed like we were on the path to eventually bringing our boy home.
Just two days after we celebrated my first Mother’s Day together, Nathaniel began doing well enough to come off ECMO. His condition was good, but after about 24 hours he started to struggle. Pulmonary hypertension was making it difficult for him to keep his oxygen saturation up. On the final day of his life, he was placed on a different type of ventilator while the doctors sat us down and said he might have to go back on ECMO. But, steadily, his blood gasses improved and it was decided ECMO wasn’t needed again after all.
While my husband, my father and I were downstairs, eating a quick dinner, our sweet Nathaniel began to struggle again. We returned to the NICU but were told we’d need to wait to re-enter his room. Once we were allowed back, we discovered he’d gone into cardiac arrest and there was a massive effort underway to save him.
It didn’t work and our beloved baby left this world less than two weeks after he’d entered it. That night, I rocked him and told him how much I loved him and how sorry I was that this happened to him. I’d waited nine long months to hold this boy in my arms and this was the first and last time I ever got to do it. My heart still shatters every time I think about that.
It’s been nearly five years since Nathaniel came and went so quickly. While he is physically gone, the impact CDH has on our lives is not. It lingers with every subsequent pregnancy (two — both thankfully ending with healthy babies), on every birthday we celebrate without him, each time someone asks me how many children I have and in so many other moments. I didn’t find CHERUBS until after Nathaniel died (the doctors told us not to Google — and for once in my life, I didn’t). I joined a local support group for perinatal loss, which was helpful, but it was also nice to have a place where I could connect to others who’d been through CDH. I’ve found joy in following the journeys of CDH survivors and felt my heart break over and over for those who had to say goodbye as we did.
We have worked hard to move forward and keep this tragedy from breaking our family, but there is still not a day that goes by where I don’t think of Nathaniel. He is ours and, as the quote from the book “Love You Forever” goes “I’ll love you forever. I’ll like you for always. As long as I’m living my baby you’ll be.””
