Neurology

So I just had a lengthy conversation with one of the CICU doctors about the neurological exam with the NICU follow up team. I had no idea they want to watch babies with CHD's. Developmental issues can happen during utero due to heart defects, but then being on life support, there's not enough research done. They are finding more and more kids with CHD's and Heterotaxy with ADHD, Compulsive Behavior and severely disorganized once they reach elementary school. He told me that 1/3rd of babies with CHD's need remedial interventions in school. He apologized that no one explained this to me before we were discharged after OHS. They want to follow Zoe on every level, and if they feel she is not where she is supposed to, neurology comes into play. He's starting up extensive research on Heterotaxy here in Chicago. I asked about PTSD and he believes most babies who are in and out of the hospital, do have this. He thanked me for bringing this up as he's adding that to the list of items he's researching. He said although Zoe's heart is "repaired" and is not complex as most babies with Heterotaxy, we just don't know what lies ahead in the years to come as this condition is so rare. So add another list of specialists we have to continue seeing. He said they perfer having a "captain" to lead this ship who understands fully on all her development versus just PT.