A Family’s Special Story

My husband and I already had a healthy girl who was 4 1/2 years old when we decided to try to have another child. After 3 unsuccessful years of trying to conceive, out of nowhere we got pregnant with our second child. Everything was going just fine with the pregnancy, so we decided to find out what the gender of the baby was through an ultrasound. My doctor was doing the ultrasound and seemed quiet and focused. She asked my husband to go out with my daughter and gave me the news that there were some concerns.

"Hydrocephalus" she said, and she could tell by the shape of the head and size of the ventricles; there were areas of fluid in the space. She also told us it was a BOY, and then referred us to a specialist in Charlotte, NC. The appointment in Charlotte was not as positive. It was confirmed we were carrying a boy, but not only did he have Hydrocephalus, but also Spina Bifida. The doctors felt he was healthy overall but would be paralyzed and not be able to walk. The extent of the birth defect seemed grim but uncertain.

Dillon Paul was born at Presbyterian Hospital in Charlotte, NC on December 20th. We were very concerned about the unknown but also excited for the life that had been added to our family. Dillon Paul was the biggest baby in the NICU at 6 lbs 3 oz. He did have a hole in his back and very little extra fluid on his brain. At two days old, he had his first surgery to close up his back. Then, the fluid on his brain went from a little to a lot! At 7 days old, Dillon Paul had his 2nd surgery to place a shunt to pump the extra fluid off his brain. At 9 days old, Dillon Paul came home.

Since then, he has learned to smile, roll over, sit up, crawl, walk and talk. He is so curious and full of life! As a stay at home mom with a baby who was born with a birth defect, I needed some support. Dillon Paul's service coordinator with CDSA introduced us to Kaaren Hayes at Parent to Parent Family Support Network-High County (FSN-HC). It was a great resource! I needed to know I was not alone and also some other resources to help us financially.

Four years later, I have kept in touch with Parent to Parent FSN-HC, gone to many family support meetings, trained to be a support parent, recently attended a conference and shared my story. Dillon Paul has had 8 surgeries and countless other tests, including MRI's and CAT scans. He is not paralyzed, but we would not love him any less if he were. It has not been an easy road, but with Parent to Parent FSN-HC alongside my family, it has not been a lonely road.

With Many Thanks, 
Kristina 
Ashe County

Dillon and sister
Published: Sep 13, 2012 12:00am

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