Oliver’s Story - Congenital Diaphragmatic Hernia (CDH)

Hello everyone! I want to share my little boy's, Oliver, story. I had never heard of CDH until Oliver was born with it five years ago. Though it went undiagnosed, we started noticing something was wrong when he struggled to breathe after cutting his umbilical cord.

They worked on him for 55 minutes and then rushed him off in an incubator. I had no idea what was happening. It took 7 hours before I finally got to see him. Those 7 hours were the longest hours of my life. When I saw him, he was in the NICU ward, covered from head to toe in tubes. I had never felt so lost and helpless in my life. My heart absolutely broke when I saw my baby boy in the NICU. I was told he had CDH, and they needed to operate on him at 5 days old. His bowels were up in his chest, and his heart was pushed over to one side, which is why he needed surgery. He remained in NICU for another month, where he had several seizures. He had lost oxygen for 3 hours at birth, which had caused 2 bleeds in the brain and a blockage. They inserted a 'tap' so they could manually drain the fluid from his brain. When the blockage didn't clear, they put a VP shunt in his brain to permanently drain the fluid from his brain, which he will have for life. At 2 months old and after 3 operations, Oliver was discharged from the hospital. I hadn't gone back home since the day I left in labor; I didn't leave his side.

He went home with a tube for feeding but managed to come off it after a few weeks.

We were told he might never walk, but we would have to wait and see. When he was 2 years old, he stood up and took his first steps. It was an incredibly proud moment!

Due to the lack of oxygen at birth, he was diagnosed with cerebral palsy at 2 years old, which affects the movement down his left side and his right eye. He only has 1 fully developed lung. He struggles a lot with leg pains at night. He screams and cries, and I have to massage his legs to comfort him. He also uses a leg splint now.

Oliver is the happiest and bravest little boy I know, and he's never let any of this stop him! I still struggle some days with what has happened, and it kills me to think of what he went through and still goes through. He's in school and has lots of friends. He is so funny, loves life, and is obsessed with trains.

He is truly my Tiny Hero! And an absolute inspiration to everyone who knows him.