What are common questions and concerns you hear from patients and families?

I think every parent wants their kids to be the best that they can be. We would ideally love for them to be happy and be fulfilled; to feel comfortable with themselves, be as successful as possible in school and to be healthy. I think parents also want their child’s health care provider to be someone that they can come to with a variety of problems, both medical and social, that relate to the overall well-being of their child. Common themes are fear — to be a parent is to have fear, whether your child has heart disease or not. It’s pretty universal. But all parents are concerned with what’s safe for their kids. That extends to exercise, medicines and sometimes even diet. Of course for children who need interventions, which is many of our more complex congenital heart disease patients, parents want to know when a surgery is necessary, when a catheterization is necessary, are we operating or catheterizing too soon or too late, and is their child getting the very best intervention.

We strive to give parents our own view and the perspective of our colleagues, with some sense of how the problem would be handled around the country. For each of those decision points that we reach, we try to consider the risks and benefits of the intervention, and to a great extent, we balance the risks and benefits and you try to come up with the best ratio of benefits to risks. We aim to pick the strategy that gives you the best long-term outcome. Helping parents to be comfortable with those decisions, to understand our thought process and partner with us in that decision-making process is very important.

– Jane Newburger, MD, MPH, pediatric cardiologist


I think one of the most important things you do is try to give them an accurate diagnosis. And that is both a positive diagnosis and negative diagnosis. It’s identifying the anatomy and physiology behind whatever the concerns are, but as you do that, you emphasize what they don’t have. At the other end of the spectrum, there are dangerous conditions, so giving families a real clear management plan and separating the real anxiety from the reality can help a lot. One of the most common questions is, “Is this terrible?” And I think the next is “How do we make the symptoms better?” I try to see whether you can find a plausible answer for most symptoms, and then if the plausible answer is innocent, then communicate that. If it isn’t, then we can offer them therapy for that; some families will say it makes sense, and others will say it doesn’t make sense for them, which is okay.

– Mark Alexander, MD, pediatric cardiologist and electrophysiologist


It depends on circumstance. From experience, when you’re talking about prenatal diagnosis, it’s an emotional shock. When expectant parents are being told that their unborn child has something wrong with the heart, this is a major problem, without exception. This is one category. In my experience with my practice, this is probably the most common circumstance when I’m the first person to tell the parents. Once you get out of the realm of fetal diagnosis, then the majority of patients that come to me have already had a diagnosis made, and the child has already had one, two or more procedures. The patients that come to me from far away mostly come because they are either very complex, or they are seeking the best possible care. Most of them have quite complex congenital cardiac anomalies. They’re coming to us with the hope that we will “fix” the heart. Then the challenge for my colleagues and I is to try to come up with an ideal balance of working with sometimes false parent expectations on the one hand, and to give them realistic hope on the other. So we talk about finding balance and providing realistic expectations.

– Tal Geva, MD, pediatric cardiologist and electrophysiologist


Parents often want to know what their child is going to look like long-term. Are they going to walk? Are they going to eat? Are they going to go to college? Are they going to get to play soccer? Most of the time, those questions are hard to answer with a newborn. I like to tell parents that sometimes it’s a good thing when we can’t answer all of these questions. Saying we feel really good about how your child is doing and we’re really hopeful that your child is going to be able to do all the things they want to do, that’s probably the best answer we can give. But we believe that providing therapy and intervention now will enhance their likelihood of getting them to those outcomes.

The other thing I hear from parents is that it can be really challenging to play the role of a parent in the hospital; that they can’t provide the care that they anticipated they would be able to provide for their child. It’s heartbreaking to hear that parent feels like they can’t be a parent and I think that’s something we work really hard on in the Cardiac ICU and all across Boston Children’s Hospital – family-centered care and providing support for the family so that they are able to do the majority of caregiving for the baby and child, even in the challenging critical care environment.

Comforting, daily caregiving and soothing needs to come from the family. That’s where the developmental rounding comes in, where we advocate for the family to provide these types of caregiving like diapering, holding and having the patient see, touch and smell their faces. Many babies can’t be held, so it’s like a puzzle for us to find an opportunity for the baby and parent to attach. We have some creative recommendations sometimes. I think it impacts the child’s long-term by providing the best environment for the baby while they’re in the hospital.

A lot of the time, I think babies just want to be comforted and held; but normal interactions like that become complicated when they’re sick with different lines, tubes and nurses appropriately concerned about the child. Often babies will be really upset, screaming, but I think sometimes we forget that amidst all the chaos, there’s also normal chaos too; they’re still a baby.

– Samantha Butler, PhD, developmental psychologist