Challenges and rewards of the job
The most rewarding is that, for the vast majority of patients, we really improve their health and make them better. The relationships that we have developed with families over decades is something that is a deep joy to somebody who provides care. For the children with chronic problems that we are managing but can never make them go away, it’s providing support for the family, and making sure that that child’s quality of life and the family’s quality of life is as joyous as it can be. And looking around corners for the family, anticipating where the bumps in the road are going to be for them and trying to make those bumps as gentle as possible. In terms of challenges as a provider, we really feel the pain of the family. If things are hard or don’t go in the optimal way, that is also painful for someone caring for the child. It’s like they’re your own children. That is the most personally challenging aspect of the profession that we’re in.
There are societal challenges; we have to fight very hard to get the kinds of resources that we know our patients need. There can be tests that aren’t approved by insurance that we know will make a difference. That’s a big challenge—being on the phone with insurance companies and explaining types of complex congenital heart disease that they’ve never heard of and why it’s necessary to do an operation or a particular test.
What’s very special about Boston Children’s and other CHD centers is that our focus is on the well-being of patients; despite the medical environment, the passion of every cardiologist and cardiac surgeon on our staff is to provide the very, very, best care for every patient. It’s what wakes us up in the morning and what we go to sleep with. It’s not a job for us; it’s a mission.
– Jane Newburger, MD, MPH, pediatric cardiologist
The most challenging thing is that some of their stories are heartbreaking. Some children have quite severe disease and we can help them to an extent, but they have a significant burden of illness and we can’t take it all away. It is hard to see a child go through that; it is hard to see a family go through it and it is incredibly stressful for all involved. Some of the sweetest moments are when you have those very challenging patients and despite that, they show you their joy. They show you love and sometimes they are the most grateful families you work with, although we know their child suffered a fair bit.
In the outpatient world, I have the privilege of seeing many children who are quite healthy. Just being told that you are healthy is the most remarkable words to be told as a family; they are extremely thankful and it is satisfying for all parties. I think there is a lot of joy and positivity to be gained in this field, whether it is taking care of kids who actually are well and are glad to hear that, or taking care of some very sick children.
– Susan Saleeb, MD, pediatric cardiologist
It’s bittersweet. There are so many families who we get to know when they’re here and I myself get very attached to them. When they’re doing well and discharging, I am so happy that they’re going home, but you also feel a little sad that you’ll miss them. Especially after you spend a lot of time with the little ones. The hardest piece is when children don’t make it. When you’re really attached to a kid, it’s hard for the staff and it takes a lot to recover after the passing of a child. That’s the hard part of the job and we all do our best. There are so many children who do well; that’s a rewarding aspect. We’re doing the best that we can for each patient. That’s why we keep going.
An important piece is that we are the neurodevelopment program, but we work very closely with the medical teams. We work very closely with the cardiologists and surgeons. Some of the surgeons are our biggest advocates. I’m attending the nursing orientations and nurses’ staff meetings in support of us all working together as a cohesive unit to provide the best care. While we are one program, we don’t stand alone. We couldn’t do this alone—nursing, child life, the other therapists, social workers—we all work together to provide for that one child.
– Samantha Butler, PhD, developmental psychologist
The most difficult part is when things don’t go well. Speaking for myself, we feel a tremendous level of responsibility for our patients, so we are heavily and emotionally invested in our patients. I am both involved in diagnostic imaging and am primarily responsible for caring for my patients. I work hand-in-hand with my colleagues in the cath lab and with the surgeons. Those are the folks are the ones working directly on the heart, sewing and cutting. I feel responsibility for the diagnosis, decisions and what happens. In that respect, we are all in it together. When things don’t go well, it is hard; it is difficult for us.
Hearing from patients and families’ experiences is extremely valuable. Because I don’t think you really know what somebody is going through until you walk in their shoes. It’s true for the families and patients.
– Tal Geva, MD, pediatric and adult cardiologist and electrophysiologist
There are a lot of things that are gratifying and challenging about the work that I get to do every day. A recurring theme is that when you’re talking to families whose child may have a heart problem or has a heart problem, they understandably want to know what things are going to look like down the road. There’s a tension between trying to give them as much information as possible, but at the same time, predicting the future is challenging, difficult and it hasn’t happened yet. Striking the right balance is delicate work. We want to provide as much information as we can, but we also don’t want to provide information that doesn’t turn out to be true, for fear that it may disappoint them or that they may lose confidence in the process. Even when the future is unpredictable, we make it clear that we will be 100% devoted to getting them and their child to the best outcome possible. And that part is always 100% predictable; we will be there.
– Andy Powell, MD, pediatric cardiologist and diagnostic imaging