Griffin's Story - Congenital Diaphragmatic Hernia (CDH)
Griffin was born a fairly healthy baby on May 30, 2016. All he had was a small heart murmur and jaundice. After a few days in the hospital we went home and were ready for the world with our healthy son.
We had never heard of CDH before July 10, 2016 when Griffin was 6 weeks old. That day has forever changed our lives, and we remember it perfectly. We woke up with it being a normal Sunday. Griffin started crying in the morning and we had a difficult time calming him down. We thought, “Well, maybe this is what colic is.” He seemed a little pale and we got a very low temp. We called the doctor who said just keep a close eye on him. Soon his cry changed. I was in the other room doing laundry when Angie yelled for me that he sounded different. I asked if we should go or call 911. We left for Renown Children’s Hospital in Reno, NV, which probably saved his life.
I can remember exactly where we were on the freeway when his breathing changed. It was slow and labored. His breathing was similar to what I have seen too many times before when loved ones have passed. I watched Griffin take what easily could have been his last breaths. When we arrived at Renown Children’s ER, they tried to take his vitals and couldn’t get a read. They immediately rushed him back and a swarm of nurses and doctors came in to help save his life. Meanwhile, we are standing back completely dumbfounded and not having a clue of what was exactly wrong. We know they had trouble getting an IV in him as they had to drill in both legs and when that wasn’t successful either, they put in a PICC line. At one point in time, Griffin had twelve nurses and doctors in the room. The respiratory therapists and doctors tried to intubate Griffin 14 times before they were successful. After what felt like an eternity they were able to “stabilize” him and keep his breathing going. They took him up stairs for a CT scan. We anxiously waited for the results. Soon a pediatric trauma surgeon, Dr. Hulka, came to see us. She told us Griffin had a Congenital Diaphragmatic Hernia (CDH). His stomach and spleen had come up and collapsed his left lung. He would need immediate surgery. She assured us it would go well and she had done these before. We heard the word hernia and felt much better. Thankfully, his surgery went off without a hitch. The hole was small enough that she was able to stitch it closed and did not need a patch. It wasn’t until later we truly realized the severity of what had happened. Nurses kept coming by his room in the PICU saying “Oh wow! We heard about him! We are glad he is doing okay.”
That evening, I decided to Google this “diaphragmatic hernia” thing. It was then I realized the survival rate is only 50%. Griffin is a living miracle, but the road to recovery is not going to be an easy one. We spent 11 days in the PICU and were able to go home without any additional medical support. Although he has some of the usual CDH side effects of getting more severely sick, he is a fairly healthy and very happy two year old. He loves Cars and playing with his puppies!