Nolan’s Story - Congenital Diaphragmatic Hernia (CDH)

Nolan was born 12/15/13 during a Seahawks game! He was our 1st born and undiagnosed. Prior to his birthday, I underwent numerous ultrasounds due to low weight gain and size. Nolan was delivered very quickly, needed the help of forceps, and had his umbilical cord around his neck, but otherwise healthy upon delivery. Two hours after birth, the nurse realized he was having a hard time breathing. (Now looking back at photos...he was very blue the minute he was delivered and after!) Nurses listened to him with a stethoscope and couldn't hear anything on his left side. They took him away to be furthered checked out.

Doctors did an X-ray and showed it to my husband. They told him about the diagnosis of CDH, and he told me the news. We finally got to see him in the NICU, but they told us he would have to be life-flighted to Seattle Children's Hospital an hour and a half away, and we couldn't ride with him. We got discharged 8 hours after he was born, and as we walked to the truck, we saw Nolan's helicopter leaving the top of the hospital! We made a mad dash to a hospital we had heard of but never been to. The drive was agonizing since we were in complete shock and didn't even know what CDH was or if Nolan would survive! Nolan had surgery on day 3 of his life. He did not need a patch, but his hole was the size of a half-dollar. He had almost everything in his chest, and his heart was pushed over. Once they moved everything out of his chest, they were surprised at how much his left lung was developed. He was at Seattle Children's for 3 weeks and mostly had stomach issues and difficulty eating. He went home with no equipment and thrived. He continued to have digestion issues, reflux, but no one would know he has gone through so much. He is truly a Tiny Hero.

He will be going into 1st grade. We decided on a virtual academy since he still deals with asthma and lung issues, as well as his two younger brothers, who have their own health issues.