What is the Cardiac Neurodevelopment Program (CNP)?
We know that children who have heart disease and surgery in the newborn period are at risk for long-term difficulties and delays. However, we believe the earlier we can get involved and actually provide interventions, the more we can change long-term outcomes for many of these children.
Parents are really savvy; they’re on the internet and have a lot of information. Most of what they’re dealing with is juggling expectations for the worst potential developmental outcomes that they could possibly have. I think hearing from someone in the hospital that there is something we can be doing about this and there are therapies that we can begin immediately can be more hopeful and positive than things they read. Parents can also see online that there are patients doing neurodevelopmental interventions, so it’s not as unusual a concept as it was 5 years ago.
– Samantha Butler, PhD, developmental psychologist
From a cardiac standpoint, we expect children to survive, so now our focus has changed so that each child should do the best that he or she can do. We begin in the infant period, when children are undergoing surgery. We have a developmental psychologist who begins to see those children in the intensive care unit and particularly focuses efforts on the ward, so that our entire nursing staff is very aware of ways to help the development of children. We refer children at the time that they’re discharged from infant heart surgery out to early intervention. For most cardiologists, as opposed to developmental specialists, if the children are growing and eating and moving their arms and legs, we’re pretty happy; but there are many fine points that we could miss. It’s important for individuals who are skilled, particularly in development, to be keeping an eye on the children.
The first formal evaluation done at this institution is at six months old by a neurologist, and then another one is done at 18 months by a neurodevelopmental psychologist. Our children sometimes need physical therapy, occupational therapy and speech therapy, and each child is different. So there are some children who don’t need anything, and there are others who need a lot more assistance. That assistance is predicated on the belief and knowledge that we have tremendous plasticity when we’re young, so you have the ability to form new connections in the brain. We really believe in getting in there early – evaluating children early, rather than a “watch and wait and see if it’s still there” philosophy – we advocate strongly for intervening as soon as possible and with as much strength as possible.
We also do a tremendous amount of work with older children. Our psychologists and educational specialists have more detailed tests that they can use to identify very specific domains where they are having difficulty. Attention deficit/hyperactivity disorder (ADHD) and trouble with executive function are particularly common. Executive function is the ability to organize, keep many different tasks in your head, order them and prioritize them; it’s what we all do in a busy job when we have to multi-task. That function is particularly hard, as a group, for cardiac kids. We are testing interventions to help with this and hopefully in a few years we can tell you more about this.
We have specialists ranging from neuropsychologists, developmental psych, a geneticist, a cardiologist, cardiac surgeons, transplant team and the ICU team. We are very fortunate to have a parent advisory group and are hosting our first family symposium this summer. All together, these are really patient-reported outcomes, parent preferences and child preferences, and we are all coming together in a really nice way. There’s also advocacy, which is really important. How can people get the services they need? That’s a highly complex topic. The program works directly with schools. The educational specialist even goes to some schools.
– Jane Newburger, MD, MPH, pediatric cardiologist