Padgett, Riley Tucker

[left:59703faca7]http://www.cherubs-cdh.org/Album/new/padgett-riley2.jpg[/left:59703faca7][Please note: To all the dads out there… this story is told from a mother’s point of view. My husband had his own experience with Riley’s CDH that is very different from mine. He was the one who delivered him to the wonderful doctors at Children’s Hospital. He was the one who barely slept for three days because he was afraid to leave our son alone. He talked to him, sang to him, and held his little hand. He was the one that kissed him before he was taken into surgery. I often wonder what he was feeling at Children’s Hospital, late at night, exhausted and worried. I’ll never know for sure – all I do know is that the experience has touched both our lives forever.]

Our pregnancy was pretty uneventful. The only drama was that I failed the triple-screen blood test and had to go to Denver for an amnio and a high-level ultrasound. It was a big shock – in my ignorance, I never thought that I would have anything but a perfectly healthy baby. We worried and panicked for ten days until the results came back from the amnio – and luckily, everything was normal. At 36 weeks, we had an unscheduled ultrasound because my blood pressure was high, and they wanted to check the size of the baby and the amount of amniotic fluid. Again, everything looked terrific.

My water broke the day before my due date, and we rushed to the hospital at 3:00 in the morning. After a lot of pushing and some help from forceps, Riley was born on Sunday, August 12 at 4:33 in the afternoon. We were so surprised and happy to have a boy. My husband, Devin, was so excited to have a son that he immediately started announcing his full name to everyone – even though we hadn’t formally agreed on it!

Riley scored two 9’s on his Apgars. I didn’t get to see him right away because it had been a stressful delivery, and they whisked him away as soon as he came out. They brought him to me for about 30 seconds after they’d cleaned him up, and I got to see him, but his eyes were closed, and he had an oxygen mask over his mouth (we live at high altitude). Devin went with Riley and the doctors to do some routine tests. They came back a little while later, and our pediatrician, Dr. Fahy, told us Riley was breathing very rapidly. He said that it was extremely common in the altitude and not to worry. The doctor said Riley would have to be on oxygen for at least 12 hours, and that he was sorry we wouldn’t be able to have him with us the first night. We assured him that it was okay; we just wanted what was best for Riley. As he was leaving the room, Dr. Fahy said, “Before I go home, I think I’ll do a chest X ray just to make sure his lungs are fully inflated.”

Some time later, maybe 45 minutes, doctors and nurses started hovering around us and acting a little funny. My OB-GYN was still there, and he looked upset. Devin was anxious because they had asked him to leave the nursery. Finally, Dr. Fahy came into the room and said, “Well, we found something on the X ray we weren’t expecting.” Then, he held the X ray up to the window and said (and I’ll never forget these confusing and horrifying words), “Now… see here, how the heart is on the wrong side of the chest?” WHAT?!

The rest of the day was just a blur, and I only remember bits and pieces. There was lots of talk about how they (the doctors) never would have guessed it – Riley was so pink and healthy looking when he came out. There was talk about the Flight-For-Life helicopter that was coming from Denver. There wasn’t going to be enough room on the helicopter for Devin so he started making plans to drive to Denver (four hours away) on the two hours sleep we’d had the night before. He finally agreed to let a friend drive him. We were waiting for our friend to show up when we got the news that the helicopter had turned around and gone back to Denver. It ran into bad weather over the mountains. They were going to have to wait for their airplane to return from Wyoming. It was very stressful because we didn’t know how stable Riley was, and we wanted him to get to TCH as soon as possible. The good news was that the plane was big enough that Devin could go with Riley.

There was talk about how wonderful the doctors are at Children’s Hospital in Denver. There was talk about how the Flight-For-Life people would put Riley in his own safe “space capsule” for the flight, and how they would take amazing care of him. There was lots of talk about diaphragmatic hernias – and it was so weird because, I mean, who had ever even heard of CDH? We were definitely in shock those first few hours.

Finally, five hours after Riley was born, the plane arrived. I was wheeled into the room to say goodbye to Riley – he was under an oxygen tent and again, his eyes were closed. I sang him a little song that we had listened to every day during my pregnancy and then that was it… they left. I had a Polaroid of him that I kept by my bed.

Devin was with Riley for the first three days of his life almost every single minute – I wasn’t able to leave the hospital until the day he was scheduled for evening surgery. Devin called me while I was en route and said there had been an opening in the O.R. and that they decided it was best to take him early. I was so relieved because I was anxious for him to have the surgery, but I was also panicked because I was afraid I might never get the chance to see my baby with his eyes open. When I got to the hospital, I found Devin in the waiting room, and about 15 minutes later, someone came out to tell him the surgery had gone well. A half hour later, we were both with Riley in the ICU.

They rest of the story is remarkable. We moved into the Ronald McDonald house for what we thought was going to be a long stay. But in a week, we were on our way home with Riley. They kicked him out of the hospital for being so healthy. We took him home on oxygen because we were traveling to a higher altitude, but he came off of that in six days. His doctor has referred to him as a “normal baby who had some stuff in the wrong place.” Although our time at Children’s Hospital was brief, I don’t think we’ll ever forget how it felt to be there -- the sounds, the smells, everything.

I don’t know why or how we got so lucky. Riley had a sizable hole in his diaphragm. But for some reason his organs didn’t decide to move up into his chest cavity until very late in the pregnancy. His lungs were fully developed, and he didn’t suffer from any serious complications. He is now taking part in a study at TCH on the effects of nitric oxide – he is one of the few babies that didn’t receive it, and so they are using him as the control patient.

We are full of gratitude every day to have Riley in our lives. It doesn’t seem fair that some of the little angels don’t make it through this ordeal. I cry sometimes when I see a helicopter, wondering if it’s Flight-For-Life, and my husband and I both cry when we stop and think about how things could have been different. I look at the pictures of the cherubs on the website and read their stories in the newsletter, and I feel devastated for the families who lost a child. What a brave battle so many of them fight to stay alive. They are all truly angels.


Written by Riley's mom, Nicole Padgett (Colorado)
2002