Evelynn’s CDH Story

When most people look at Evelynn, they see a happy, bright, fearless 2 1/2 year old girl who loves to play with her big brother and give hugs to her family. What they don't see is the long, tough, prayer- and tear-filled road it took to get here. 

Our girl was diagnosed with left-sided CDH at our 20 week anatomy scan, and we were referred immediately to The University of Michigan Mott Children's Hospital for care. Once we were evaluated at Mott it was found that she not only had moderate/severe LCDH with liver, stomach, and part of the intestine up, but also a large VSD, small ASD, coarctation of the aorta, and scoliosis. 

Evelynn was born four months after we received her diagnosis, at 39+1 weeks via elective c-section. We did not get to see her after birth; she was whisked away to the Nest and intubated, sedated, and put on oxygen as quickly as possible. After recovery in the surgical triage area, we were taken to our room right down the hall from the Brandon NICU where Evelynn was. Ben was able to see her that night. I saw her the next day once I was allowed out of bed. 

At 5 days old, Evelynn had her CDH repaired and she came through absolutely amazing! The surgeon said that once they were in and could see it clearly, her hernia was a C++, meaning there was no natural tissue on that side and a patch had to be used to close the hole. At 28 days old she had open heart surgery to repair her heart, which also went very well. Thankfully, ECMO was not needed at any point in her stay. Over the next four months, Evelynn would battle a nasty staph infection in her sternum after the heart surgery and spend several weeks on Negative Pressure Wound Therapy while the bone and tissue repaired themselves, weeks on strong IV antibiotics, and a run with necrotizing enterocolitis without perforation. She did not learn to take a bottle and was fed through an NJ tube. The surgery team told us that she was a candidate for a Nissen fundoplication with g-tube button placement, but she had been through so much and we wanted to wait. 

On December 19, 2023, Evelynn was finally cleared to go home. Her reflux was deemed manageable, she was on 2 liters of oxygen, and was past all of her infections. At four months old she finally got to come home, but not for long. She was readmitted on December 29 for severe reflux and aspiration pneumonia. Three weeks after readmission, we went ahead with the Nissen and g-tube. The surgery was successful and she was discharged a week later. 

Currently, Evelynn is 2 1/2, off of oxygen, still g-tube dependent, and having the time of her life! She is learning to walk, talking constantly, and trying new foods and figuring out how to eat with her mouth. She loves playing with her big brother, snuggling with her daddy and me, and telling everyone what to do. We are so very thankful to God, all of the caregivers, providers, and nurses that took care of ALL of us along the way. Now Evelynn is able to be a beacon of hope to other families who face these diagnoses and challenges.

Hail to the Little Victors!