Advocating for your Heterotaxy Hero

After my son, Noah, was born, we spent the first few months in the hospital just trying to get him to survive. It was when we finally came home, and I started to do my own research, that we saw just how unique heterotaxy is. No heterotaxy child is the same. As I connected with other heterotaxy parents on Facebook, I learned more and more about my son’s diagnosis and what to watch out for. Invaluable information that many times health care providers cannot or do not provide. I think most doctors have good intentions, but ultimately most heterotaxy parents have more knowledge about it than them. Specialists can tell you how they would treat a child within their area of expertise, but oftentimes they don’t know how that will affect the rest of the child’s body.  For example, one complication of heart surgery is vocal cord paralysis because one of the nerves that stimulates the vocal cord runs close by the heart. My son had this happen during his second open heart surgery. When we talked to the ENT doctor, they said not to worry too much because the other vocal cord compensates for the paralyzed one, and it doesn’t cause any problems down the road. I asked about his third open heart surgery and the possibility of paralyzing the other vocal cord nerve. They said it was not close to where they would be operating.  But my concern was that they didn’t know exactly where that other nerve runs because of Noah’s heterotaxy, and it might be different than normal, and they agreed. So it’s things like this that are always in the back of my mind when a health care provider talks to us.

 

I think it’s important to know that most pediatricians have never treated a patient with heterotaxy, and that’s okay. The key is that they take this diagnosis seriously, research it themselves, and are open to your concerns. No one is more committed to your child than you. We, as parents, have the extra time and motivation to do the research to help our children. Its okay to ask questions, and doctors should not dismiss them.

 

Noah is now 4 years old and has come a long way from the scary times we spent in the hospital his first few months of life. His diagnoses include TAPVR, DORV, hiatal hernia, asplenia, and microgastria. He has undergone 3 open heart surgeries and 1 GI surgery. He coded a day after his first open heart surgery and was placed on ECMO for 3 days. Later we would find out that he suffered a stroke while on ECMO and was diagnosed with mild hemiplegic cerebral palsy (fancy name for one sided weakness). You would never know anything was wrong with him if you met him today. We just got back from Colorado where he dealt with the altitude better than the rest of the family. He went fishing, swimming, tubing, ziplining, golfing, and ice skating. He will be going to his second year of preschool this fall. He is absolutely perfect in our eyes. We thank God for him every day. He is our hero, and we could not love him any more. His next milestone is being promoted to big brother this October J.

Alana Madden - Mom to heterotaxy hero, Noah