Challenges
Hoping for a miracle
The challenge is that the parents are always hoping for that miracle. And they hear about other patients that maybe that I’ve taken care of about how their child didn’t walk, but now is walking; that their child wasn’t able to do ‘X’ and is now doing ‘Y’. However, these parents are very appreciative, especially the parents of older kids because they understand that successes come slowly.
Brian Snyder, MD, PhD, Orthopedic Surgeon
Dealing with systems issues
There are systems issues that I find challenging–satisfying when it works out, but challenging at the time. It can be very difficult to do something as simple as getting four physicians in the same room at the same time to discuss a child’s care. Sometimes there are frustrating things that have to do with getting needed medications or equipment approved. It’s very frustrating when, for example, a child grows out of a wheel chair but because they got their current wheelchair recently they don’t fit the insurance criteria to get a new one. I think those frustrations drive a lot of us in this field to becoming advocates for our patients, to try to get them what they need and also to teach families how to become effective advocates themselves.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Need for advocacy
When parents get a new diagnosis of cerebral palsy, I don’t think they have any idea of how much of an advocate they will need to become to get their child’s needs met. Even when there are many resources, families need to be assertive to get them, and the health care system is not always set up to be as patient friendly as it should be.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Concrete resources
Sometimes, the overwhelming challenges are the emotional ones, and other times it can be the concrete things. How does the family get to and from appointments without a van? Who pays for equipment? How do they make time in the day for therapies? There have to be resources made available to families facing these challenges and, more importantly, an awareness that these are challenges.
Susan Shanske, LICSW, Licensed Social Worker
Transitioning to adulthood
When a child turns 18, they are legally an adult. This is not a process that happens on one birthday for anyone, but for young adults with CP, the process of transitioning to adulthood is often more complex. There are many issues to explore, including guardianship if necessary, and generally moving from a pediatric mindset to thinking about the care of an adult. This transition must be a process that families consider as the child develops, giving the young adult all the tools they can possibly use to be as independent as possible. It is always a challenge to consider the idea that independence may not be a possibility, and how the entire family will best be supported in the future.
Susan Shanske, LICSW, Licensed Social Worker
Winning the game
I think as a surgeon, it’s easy to try to set yourself up to do one job, do it perfectly, have exactly the right outcome, and therefore sort of “win the game”. But, I think that winning really matters to the individual and for the individual in the one thing you’re trying to accomplish. So, we’re trying to set our expectations realistically, and then convey what those expectations are to the family and not seem like we’re shooting too low. You always want do the most you can and people come here because they are hoping for a miracle. The frustrating part, the hard part is when there is an expectation that you–on your part or on the parents’ part–that may be unrealistic, and trying to achieve it at the sake of doing too much or not doing enough is a hard thing to reckon with. I think that what you can give them is a realistic idea of what’s possible, and if you know somebody else out there who can do a better job, then let them get there and help them get there.
Travis Matheney, MD, MLA Orthopedic Surgeon
Rewards
Appreciating what you have
I love working with families who are so invested in their children. I love the perspective that families get when they’re dealing with having a significant health and/or developmental issue. I think a lot of times people don’t appreciate what they have, but families who aren’t necessarily sure that their child is going to meet certain milestones learn to appreciate things that other people take completely for granted, like being able to walk or to smile. It is rewarding to share their joy in these accomplishments and it makes me able to appreciate different things in my life as well. I find that very motivating.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Connecting with children
I love when I learn how to communicate with a child who doesn’t communicate verbally, and when I can find a way to help them feel more comfortable around a doctor. With any kids I work with, I hope to make them feel like it’s fun and not scary to be around a doctor.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
A rewarding experience
One day a few months ago, I happened to be doing rounds at a time when the moms of two patients were not at the bedside. When I got to each of their beds, the children wanted me to pick them up and didn’t want to go back to bed once I was holding them. It just made me feel really good. One of them I’ve known for a very long time, and he had never asked me to pick him up before. The other one had been very scared of all doctors, and the first time I tried to examine her she cried, so for her to actually ask to be picked up was really nice.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Improving confidence
Anytime you help the children improve their confidence and they’re able to live in society and function at a high level or at least the highest level that they’re capable of, I think that’s very rewarding.
Gregory Melkonian, DVM, MD, Orthopedic Surgeon
Seeing a child smile and overcome challenges
I think for me the most rewarding piece is helping to improve the quality of lives for children and their families. Sometimes, you could also see that as the most challenging piece. The problems associated with CP are often times very difficult to change on a fundamental medical basis, although we have a lot of medical interventions to help with those problems and to slow them down and to improve them. But for me, just seeing a kid smile, seeing a family that used to really struggle around a certain issue overcome that issue is very rewarding. The things that affect a child’s quality of life, changes and improvements in those areas are really striking to me. That just makes this work all worthwhile.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program
The hardest workers you will ever see
The truth is that these kids are often some of the hardest workers you will ever see. I think the reason why a lot of us go into this field is because we like the attitude and the verve that the kids have. This particular population has to work harder everyday at whatever they do, so I admire them. I think it’s fantastic that I can be involved in that aspect of their life, and be in some way a facilitator for them by making their lives easier. On the family side, the families are often times made of some of the greatest people you ever want to meet. They are true, caring people. They look after things that you and I would curl up in a ball and cry ourselves to sleep at night about every night, and they deal with it on a daily basis and somehow find a way to make it a reasonable and doable part of their lives. From my perspective, the real cool part is really getting to be some part of that whole schema and seeing how parents interact and care for their kids and also being and making friends with them.
Travis Matheney, MD, MLA, Orthopedic Surgeon