Half-heart, Whole Body: Part Two, B-R-A-I-N-S

Recently, at the behest of our cardiologist, we met with a neuropsychologist who administered a great many tests and even called our son’s teacher for an interview. There was no recent trigger for this visit, other than my intense interest in the “Whole Body” health care approach to CHD and our recent trip to the Single Ventricle Survivorship clinic at Children’s Hospital of Philadelphia.

The field of neuroscience is advancing rapidly, and the leading pediatric cardiologists are realizing that you can’t put a body on life-support multiple times during a child’s most active developmental years and not expect something to happen. They won’t know what that means unless they study it broadly.

As promised, I’m not going to talk about my son in particular.So, after spending an entire day in Aurora at Colorado Children’s Hospital and returning for an assessment, here are some very general things that I learned.

1. Psychosocial skills are really no different from reading or math skills in the sense that your brain needs practice to get good at them. Some people’s neural pathways develop super fast with these skills (that would be the kid who everyone wants to play with at school), and some people have genuine disabilities, just like people have reading disabilities such as dyslexia. When that happens, the best thing to do is retrain the brain, as soon and as much as possible. This is akin to cognitive-behavioral (how you think and act on your thoughts) modification through therapies such as one-on-one with a therapist or in a group of people learning the same skills, and lots and lots of practice.

Personally, I was extremely delayed with this function as a child and it was one of the hardest skills I ever had to learn. I’ve gotten pretty good at it, I think. So if you have a socially awkward child, heart child or not, take heart because progress can be made with patience, time, and support.

2. Executive function is another skill that is not dissimilar to other neurological skills. It’s basically the big-picture ability that allows you to arrange abstract details (I need to open the closet door before I can hang up my clothes, but before all that I need to finish the laundry) into a big picture goal. Some kids do well with this and don’t fluster easily. Other kids (and adults) struggle with organization both of time and space. Again, in my case I still struggle with this in a spatial way, but I’m a good planner in other ways. The point is, this is a skill, again like reading and math, that is learned over time, and some people learn it faster than others.

3. Cognitive function is the more academic piece of the brain-pie. This is your aptitude for things you would learn at school or on the job. Math skills and reading skills fall into this area, and it’s the easiest one for lay people (ordinary folks like us) to understand. We get that some people are better at math than others, just as some people are better at sports than others. I think if we could just apply this metaphor to all the other neurological skills that children are developing before adulthood, we would be much less judgmental about childhood behavior and much more likely to find the kind of skill-tutoring that is right for each struggling child.

4. Processing speed is kind of like the processor in your computer. Some or our neural networks are just not super efficient and we’re slower at processing different types of information. This is why some people do better with images and some do better with sound when learning.  Slow information processing doesn’t mean someone isn’t smart or capable, it just means they take more time to get the information from their senses to form a response like catching a ball or finishing a math test.

Really, what I learned is the brain is super complicated and needs time to develop the many functions humans use everyday, but I’d picked that up in Greene’s The Explosive Child years ago. That book was so incredibly helpful when I was a new mom and helped me understand my kids weren’t trying to drive me crazy, they were just trying to develop neurological functions. Also, while the title of the book included the word explosive, some behavior delays and challenges are not always disruptive and are more subtle but no less important to the overall health of a child and family.

What was different about our recent visit was the acknowledgement that open-heart surgeries and CHD itself may impair functions that were not already strong in a child and compromise natural strengths. We see many gross motor skill delays in CHD kids, but no one used to look at things like executive function or emotional growth in a clinical way. It used to be all about the heart, and now we’re seeing more of the whole body.

While a closer look can be scary, what’s wonderful is that we are finally seeing that collaborative care approach between specialties that has been needed for so long! That is lighting up the pleasure center in my brain and warming my heart.

My Advice?

1. Check out Greene’s book (mentioned above) from the library or buy it. It’s a great book and I think every parent should get a copy of it and be forced to read it before you take your baby home. It’s so insightful, not because it tells you exactly what to do or what not to do, but why your kid might be doing things that drive you crazy, any kid, even the most healthy ones. I wrote to Dr. Greene about this post and his nonprofit site Lives in the Balance, and he was kind enough to write back and share that the website contains “lots of free resources that I hope will also be helpful to people.” Really, if you’re thinking about taking steps two and three of my advice, Greene’s books and website are a good start so you know what kinds of questions to ask your physicians, clinicians, and schools. And I was not paid or even asked to promote this book, it just was really that helpful to me as a parent to find my bearings early on in my children’s lives and I think we’re all healthier for that.

2. If you’re a heart parent or an adult CHD patient who had pediatric heart surgery, talk to your cardiologist about what your center is doing in this cross-disciplinary area. Our own recent visit will inform and improve our child’s 504 plan at his new school. In the past I used the 504 as sort of insurance policy, should we need special considerations around long hospitalizations or unexpected complications. Now, it’s going to be a proactive tool that identifies both growth areas and strengths and sets our child up to achieve, not fall behind. We owe it to ourselves to learn more about how the heart and brain are connected so we can get our kids (or selves, ACHD folks) the services necessary to catch up on any delays that may or may not be the result of CHD.

3. If you’re not a heart parent or are concerned about a healthy child displaying difficulty in one or more of the areas listed above (they’re not exhaustive, read the resources in the links for more information) talk to your pediatrician about your concerns. We don’t talk about the variety skills children need to develop enough. Unlike the standardized math and reading tests, there are many more skills that can be measured and strengthened with the right resources and support.

That’s all I’ve got on brains for now. Next time I’ll write about how the Fontan circulation impacts the liver and what we learned at the Single Ventricle Survivorship Program last August.

Oh, and thanks, Dr. Greene for responding to my email and all the work you do to help not only children, but also strengthening communities to support kids and their needs!


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