Carl James’ Story
Hello! My name is Megan and I am so excited to have stumbled across this site!!! I have been looking for something like this for years. Me and my family are from Utah. My husband Carl and I have been married for 8 years and we currently have 4 children with one on the way. (one boy, three girls, with a boy on the way) Our oldest Carl James who has SB, our identical twin girls Morgan and Kylee, and our youngest daughter Jaidyn, next we will have a boy :). We first found out that Carl James has spina bifida at our 19 week targeted ultrasound. The technician kept going back to his spine and I saw the sac and knew something was wrong. I had taken some medical classes in high school and something inside of me remembered something about this and knew it was bad but I couldn’t put my finger on it. Later the ultrasound technician left the room to have us talk to our doctor. My midwife informed us that our baby had spina bifida and that could mean that he would be in a wheelchair for the rest of his life and incontinent of bowel and bladder and it could mean he would be perfectly fine. They had no way of telling at this point. I remember being so grateful that my husband was there and that I was sitting down. I sank into his chest sobbing. I of course started researching everything I could on SB and the appointments with the perinatologists and primary children’s started. He was born in the U of U and later taken to Primary Children’s where they closed his spine at 1 day old. His VP shunt was placed at 3 weeks old and later he was casted for his club foot. The first 3 years seemed the busiest and the roughest medically. Now it’s harder socially. He is now 8 years old. Constipation and shunt revisions are probably our biggest complaints medically. He walks unassisted in our home but has an unstable gait and should use a walker in the grocery store and such but he refuses to do so. When he was in school he used his walker so he didn’t bump anyone in line and so he could keep up with the class. (He is homeschooled now) He definitely needs a wheelchair for places like the mall or the zoo where a lot of walking would be taking place. He has recently become much more independent with his toileting needs. Unless he is soiled badly he will change his own diaper on his own time. I think that’s pretty responsible for an 8 year old boy!!! We are at a point now where we are really hoping to get him out of diapers but still can’t figure out how to get his BMs moving on a regular basis. Having a child with special needs has been one of the hardest things I have ever done but it’s been one of the most rewarding as well. Watching him grow and accomplish things despite his struggles puts me in awe. Finding the balance between pushing him and nurturing him is always hard but well worth the struggle. I have seen him figure out how to do things I never thought possible or never thought to have him try either because my husband made him do it or the physical therapist made him. There would come a point where I just got used to putting on his shoes or pants and I would forget to let him try at some point. I like having an outside view to help me see these times.
I have heard so many stories where parents have been pushed to terminate the pregnancy when the baby had spina bifida and even a story where the parents opted not to have a shunt placed so the child did not make it. This saddens me. My son lives an amazing life and inspires so many people around him with his bright attitude, his perseverance, his humor and his creativity. I am so grateful for the modern medicine that has been able to keep my son alive yet it is so nice to see other mom’s out there looking for alternative options for chronic issues. I look forward to getting to know everyone on here and to hearing your successes!