Our son Blane was life-lighted 2 hours away to Geisinger Medical Center in Danville, PA the day after I delivered him.
The day I delivered Blane in our home hospital was the most wonderful day of our lives. Then it became the most terrifying time of our lives. We starting seeing strange symptoms. He would not nurse, he didn’t have a meconium bowel movement, he was vomiting green bile, and his stomach started to distend. His pediatrician came in and brought up “Hirschsprung’s Disease” and said he needed to be taken to a different hospital right away. We had no idea what “HD” (for short) was or any idea what would be in store for us.
Once his father and I finally made it to the hospital our baby boy was in a NICU bed covered in wires and beeping sounds and the fact I had to see my son like that tore my heart apart. About a day later, Blane went in for a biopsy to see if he tested positive for “HD.” He did.
Along with testing positive for “HD” he also tested positive for a blood infection. My poor boy was only a few days old at this point and as parents we had no idea of really anything other than we wanted our baby boy to be healthy. Blane recieved a stoma and a colostomy bag at just five days old. After his infection was treated and we had learned about taking care of a stoma and colostomy bag, we came home.
The trials and errors during that time were unreal, but we made it through.
At 2 1/2 months old Blane went back in for another surgery to reverse his stoma and colostomy. This second surgery he recieved was called a pull-through in which they take down the bad colon and connect it to his tooshy! That surgery went excellent just like the first, thank the Lord! As of today Blane is 2 1/2 and living with Hirschsprung’s Disease. Hirschsprung’s Disease is an issue with the colon in which cells have not developed in which Blane or any other patients are unable to push out a bowel movement.
Today he is a very strong, happy, and healthy little toddler. The symptoms we still deal with on this journey include diarrhea with sometimes severe diaper rash, we have to watch everything he eats as some affect him badly, and his potty training may take longer than a toddler without “HD.”
So today I thank God that his condition is not worse. I’m so thankful we have not dealt with very many complications. We still deal with this disease daily but we are managing one day at a time!
March is the Month to Share YOUR Story!
Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.