How can families help their child cope with a heart condition?
Especially with the older children, my view is that it’s important to talk about the child’s medical condition early on – especially for those children who need to come back so often for surgeries and return medical appointments; talking about appointments in a developmentally-appropriate way for the child and talking about what they might need in terms of hospitalizations and surgeries. I know parents struggle with how to talk to children, if they should talk to children and what should we say. And we have a whole team in Child Life that is focused on exactly that. An important piece of coping with a heart condition is talking; not only talking about the heart condition is, but about what it’s going to entail in the next couple of weeks.
There are a lot of great books that focus on heart disease, even coloring books, and a lot of great avenues to talk about heart disease quite early. Having parents at the bedside during the hospital stay does help with the child’s coping. We also recommend bringing things familiar to the child into the hospital, and trying to keep things as similar as possible. If the child’s not used to doing a lot of homework at home, you might not want to try having them do a lot in the hospital. Just trying to be consistent is good. If they’re not used to having a lot of time with the parents or siblings, especially with older children, that may be harder in the hospital.
– Samantha Butler, PhD, developmental psychologist
I’ve seen many times that children – young and adolescent – once that they figure out that they can resist, it’s the only way that they can exert some form of control. They don’t comprehend the self-inflicted damage, but it’s their only way to control the situation. That can become a challenging situation with the parent, when the parent understands that the procedure needs to take place but the child is resisting.
I encourage these parents to see a psychologist. From my perspective, the first step is to acknowledge that this is a fundamental variable of care. My job is to take care of the heart, but if there are problems elsewhere, I can’t pretend that is not my problem. That is not what being a pediatric cardiologist is. Once you recognize it, you take care of the person, of everything. And if you don’t have the skills needed — like psychiatry — you work with a team that does. In a place like Boston Children’s, we work as a team. We also work with the mental health professionals in the community, which becomes especially important when you get to teenage patients and young adults.
– Tal Geva, MD, pediatric cardiologist and electrophysiologist
As kids move into adolescence, the willingness and ability of parents to give up medical control and let the child be the communicator and decision-maker is critical to helping people have control and cope with it. Helping families with substantial congenital heart disease make that transition is even more critical. Many of these disorders are not one-and-done diseases, so helping families make that transition lets them cope with the realities and decision-making as their child gets into adult life, which includes thinking about family planning, alcohol, work and all sorts of decisions that may not otherwise be hard for somebody with no medical condition.
A lot of what I do is basic pediatric-adolescent medicine principles. If I have anybody over 12 years old, I actively give my card to the 12 year old and I say, “You’re over 12, you get the card.” They often hand it right off to mom or dad, but it reminds them that they’re the patient, not mom and dad. I work to communicate that they’re the one that’s supposed to email me. That’s the expectation that I give the families early on — that the child is going to increasingly become in charge.
The adult congenital heart disease patients are a rewarding group to work with because it lets you smooth that transition to adulthood out over several years. I’m comfortable talking to them about pregnancy issues, I’m comfortable talking to them about drug and alcohol abuse and I’m comfortable with young adult medicine. I’m comfortable with that transition in addition to the more hardcore cardiac issues like, how do they cope with their pacemaker or arrhythmia sort of issues.
– Mark Alexander, MD, pediatric cardiologist and electrophysiologist
On coping with heart disease from a known genetic condition:
I start talking to them when they’re 14 or 15 and—boys and girls—and remind them what the risk is. I try to frame the risk as several parts: one part is what would the risk of pregnancy be for a woman with her disease. Some diseases pregnancy is bad for, and some pregnancy doesn’t really matter for. And then: what are the odds that they’re going to pass that onto their child. Mostly the way I frame it is that you want those choices to be on purpose, so I push them to think about birth control early, and push the guys to be respectful and think about birth control on their end.
We work pretty hard to make sure we’ve done effective family screening for the genes and diseases that are relevant. And every time we do that, that reinforces to the family that these are questions that they have to constantly cope with. We have a genetic counselor to whom we’ve sent a few families as a way of reinforcing the math when families are having a hard time wrapping their heads around it.
– Mark Alexander, MD, pediatric and adult cardiologist and electrophysiologist