Colton's Story - Congenital Diaphragmatic Hernia (CDH)

If there is anything I have learned from this whole experience it is to not be afraid to celebrate your child. Don’t be afraid to ask questions or ask for help. You will have an army of support behind you. Lean on those around you and never give up hope. Most of all enjoy, every second of your child. I wholly believe the saying "Everything happens for a reason.” I was 18 and newly married to my husband who is in the Marine Corps. I was just shy of thirty-eight weeks pregnant and had experienced a pretty normal pregnancy. I received news that would forever burn like a bad taste. The doctor started with "I'm so sorry," then proceeded with, "your child has a life threatening birth defect called a congenital diaphragmatic hernia.” He continued to explain what exactly it was, then ended our conversation with something that I'll never forget. "Please prepare for the possibility of not bringing your child home alive." That hurt really bad.

I was only eighteen my husband and best friend was three hours away in Pensacola. I spent that night in a sleepless blur. That following morning, I got the call due to Panama City not being ECMO equipped that I needed to go to Shands Children's Hospital in Gainesville. I had spent the night before packing, so we got in the truck, and I was lucky enough to be able to pick up my husband before we went down to Shands. We arrived late into the night, and I got up to labor and delivery where they were doing ultrasounds and other testing. They didn’t have intentions of keeping me, but due to the fact that I had been experiencing contractions from thirty weeks until then due to the extra fluid, they decided to keep me.

The next morning, we met with the whole team that was going to be hands-on with Colton’s delivery and care. They made the decision to start the induction the night before I turned thirty nine weeks, so I had to stay and do daily non-stress testing. Colton had other plans on Sunday. Two days before the planned induction, I was in full blown labor. Colton was born in the early hours of Monday. As they were intubating him, my husband, Jonathan, was able to get a quick picture, then they let me see him as they were wheeling him to the NICU. A couple hours passed and they allowed my husband to go see him. Through the day the team had come to my room to talk to us as they realized Colton had some sort of complications that caused his blood to be thin and possibly cause brain damage. He received a blood transfusion. They explained the blood issues ultimately eliminated the option of ECMO. We discussed a treatment for his brain, in which they started a 72-hour cool down process to minimize brain damage. They were doing head ultrasounds and monitoring his blood. Twenty five hours in, he started developing a brain bleed. That being the number one priority, they started reversing the cool down. They got Colton back at a normal body temperature, and pediatric neurosurgery met with us. At this point, it was a watch and wait thing.

Pediatric surgery met with us the second night after Colton was born. He was doing amazing and was stable. We decided that following morning to go ahead with the CDH repair. I remember that long day sitting in the NICU waiting room, and finally, we saw Dr. Larson walk in with a smile. Colton had a minor hole in the left side of his diaphragm that required just stitches. He only had a small portion of large intestine, a small portion of small intestine, and his spleen up. In the days following, Colton would progress amazingly. By one week old, we finally got to hold him and feed him, as he was only on a CPAP. The next day, he was moved to room air. As that next week went on with neurosurgery still involved, they noticed his pressure was rising due to spinal fluid not being able to flow properly as a result of the bleeds. We made the decision to have a VP shunt placed to help. So just at two weeks old, Colton had already experienced two major surgeries. By three weeks old, Colton was off all IV medication and was just working on bottle feeds. Christmas day, Colton was moved to another part of the NICU, as he was no longer considered critical care. We spent the next three weeks struggling with bottle intake and prepping for discharge, as we were supposed to be moving to North Carolina on February 9th. The lovely team at Shands set us up with doctors at Duke Children’s.

Forty two days- 6 weeks to the day- after Colton was born, we left through those hospital doors. Everything happens for a reason, and I will forever believe that. If anything about the past two years would have been different, we wouldn't be as strong as we are today, nor would we be the people we are today. I couldn't give enough credit to every single nurse and doctor that was involved with Colton’s care, They are angels. Most importantly, right after Colton’s diagnosis, we didn’t know how our life was going to be, Marine corps wise. However, I have watched countless of my husband’s fellow marines, as well as leaders, go above and beyond to stand behind us. They have truly had a huge impact on our lives as far as support. Colton will be two this December. He is so smart. He is in physical therapy to help him learn to walk, in addition to speech. Since his NICU discharge, Colton has been admitted to the hospital twice with issues pertaining to CDH. You wouldn't know what he has been through looking at him. This kid is the life of the party. He is our survivor, our CDH warrior, our Tiny Hero.