We found out about royalty entering our family in the summer of 2016. Biologically, this was my second baby; Samual’s dad’s third. I had a history of preeclampsia. I was diagnosed on the day my first, Franklin, was born at 26 weeks and 2 days. He was a NICU superstar, along with Samual. The boys spent almost the same amount of time in the hospital, and I often said that Franklin was my training for Samual. Little did I know, nothing compared to what CDH had in store for us.
Like many, the first time the doctors could see that there was a problem was the day we found out we were having a boy at our 18-20 week anatomy ultrasound. When I was pregnant with Samual, Franklin called him his superhero, our Super-Sam.
Samual was born at 34 weeks and one-day gestation because of absent blood flow through the umbilical cord. We had intermittent blood flow issues before that, but they seemed to resolve with bedrest before that day. I had three ultrasounds a week to monitor his condition, so that day, as soon as we started I literally said, “Let’s go,” after begging the doctors to hold off. Samual was ECHMO weight eligible, which he ended up not needing.
After Samual was born, he got a clot early in his 1st PICC, and it caused a blood staph infection. The doctors said he may lose a leg later in life because the clot stopped blood flow at the groin. Because of the staph infection, we had to go on an oscillator. I describe it like an oscillating fan in his lungs that pushed the air through to get better oxygen flow. He did amazing with that.
After a month, Samual had a dual surgery two weeks earlier than expected because of the need of a Broviak port for blood draws. As he had to start Heparin therapy, he got referred to a hematologist because they couldn’t figure out why he clotted every line. (The Heparin therapy was replaced with Lovenox shots, but I do not regret the port because it made blood draws easier.)
His surgery was long; the doctors thought it would take four hours, but it was the longest 6 hours of my life. The doctors had discovered more of his liver was up than anticipated. But they successfully repaired him with a muscle flap. The outside of him was healed before my cesarean incision. We had one more surgery after that to take the Broviak out.
He was off of oxygen in no time and took over half of his feedings by mouth. That’s when the doctors taught us how to place the NG, a temporary feeding tube from his nose to his stomach for the food he couldn’t finish in his bottle. The hospital trained us to give his Lovenox shots (which I was on throughout pregnancy to prevent preeclampsia). We were sent home four months before we anticipated according to everything we read and planned for. It was amazing; we were finally living life as a family.
We decided to take him to meet Papa Bear, his grandpa, and the rest of my family and friends in Wisconsin for two nights. He was a little tired, but we had been traveling. We were on our way home and he started crying a different cry. I thought he needed a rest as we had been driving for a few hours, so we pulled over to eat and stretch. I called the doctor because of the crying, and we decided to go to the hospital instead of directly home for an appointment the next day.
I went to the bathroom where we were eating, and when I came out, Olivia, one of the seven kids we cared for, told me that Kay, my mom, said that Samual wasn’t breathing. I ran to where we were seated and immediately took out his NG and started CPR. My mom even found a doctor that took over; it was like the EMS was already there. I kept asking to be taken to a hospital with a NICU, we were too far from them and the traffic was terrible. When we got to the hospital, they continued working on Samual for hours, but could not save his life.
We had so many questions, but months and months went by and we did not have any answers until the autopsy came back. Natural causes from complications of CDH and rhinovirus (the common cold).
It’s been devastating. It was a very hard first year. I became a shut in. We got pregnant very shortly after his death with Quinn, our rainbow baby. She was hand-picked by Samual and sent here from heaven. She even has a birthmark on her nose: I looked it up…an angel kiss. It is hard, every day is hard, but we find ways to honor him in our house. One of Samual’s brothers prays to become a doctor to go to heaven to fix him and bring him home. The kids going through it all, witnessing it all, really has been hard.
We have started his non-profit foundation to honor Samual and help spread awareness, as we had no idea what Congenital Diaphragmatic Hernia was pre-diagnosis. We are trying to find meaningful ways to help CDH families and patients to get tools to better their quality of life. Samual’s life was 110 days. He survived and overcame more in those days than most people ever have to face in life. He did it with the sweetest little smile and those big brown peepers. He taught me lessons on everything from perseverance, love, heartache, courage, and so much more. He is an amazing person; his story isn’t over.