Thompson, Ryan Treasure

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At 35 weeks of pregnancy with my first child, the doctor ordered another ultrasound because my belly was too big, needed to make sure we didn't have a huge boy in there. That is when they noticed the baby's heart was not in the proper place, it was moved to the right. At that time, they told us it could be a CDH, tumor, or a chromosome problem. They did the amino the same day, which came out fine. They decided that it was a CDH, and referred us to Children's Hospital Oakland. My care had been switched to a different doctor also. We met with neonatologist and surgeons immediately, who told us our chances were between 50-75% survival. At 38 weeks 5 days they induced labor. After 3 1/2 hours our boy entered this world, the doctors immediately took him and put him on a ventilator, and prepared him for transport to the other hospital. They did let me touch his little cheek, and before they transported him, they brought my baby through my room for me to see for a moment. Ryan (my baby) was strong enough for surgery the next day, as soon as I was discharged I went and waited, the doctor came to me and said Ryan had made it and there was enough lung tissue for survival. Two days later they took him off the ventilator, that was a rough day, but he was strong and did well. A week later they removed the chest drain tube, I finally got to hold my baby ten days after birth, they also started to feed him breast milk through a tube. I knew from my research, that feedings were going to be difficult, they fed him through a tube for a few days they tried to nipple him, which was rough. After about a week of going round and round with nutritionist and doctors about how much Ryan needed to eat. They kept nippleling and then gavaging the remaining amount they thought he needed, and he kept throwing it up. They finally asked what I thought, I told them that I wanted to get him home and see what feeding schedule he wanted to be on, instead of making him conform to the hospital schedule. I told them I wanted to take him home, they said "Let's see if we can get them out before rush hour"! That was 20 days after birth. They sent us home with a feeding tube down the nose, and we were supposed to gavage what he wouldn't nipple. I had no intention of using the tube once we got home, thankfully, Ryan took to the breast immediately. Three days later, in the middle of the night, Ryan started to remove the tube, I woke to him coughing, we pulled the tube the rest of the way out. The next day, we had a pediatrician appointment, Ryan had gained weight and we didn't need to replace the tube. So our ordeal was the best of a horribly scary situation. 20 days in the hospital and now we have a baby with a scar and 1 & 2/3 lungs. We are so thankful for the outcome, especially after reading some of the stories on your website.


Written by Ryan's mom, Cara Thompson (California)
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