Jun 1, 2021

When you are expecting a baby, you have so many hopes for the future of your child. What if you learn that your child will have physical or developmental disabilities? I'll discuss your pediatrician's role in your child's care on today's Scope.

Often parents will ask me if I'm able to take care of a future sibling of one of my patients. The answer always is of course. Some parents will then get a little more quiet and say, "But my baby isn't normal." And I'm like, "Are any of us normal?" Seriously, if you've ever studied embryology and seen all the things that can go wrong during development, it's amazing any of us come out okay. When it comes to seeing new babies who may have some physical or developmental challenges, I honestly tell them I would be honored to be their new child's pediatrician.

When I was five, we moved to a house where the neighbors behind us had a son my age. His older sister had Down syndrome. In the five years that we lived at that house, his sister became one of my best friends. We would play school together, go to the pool together. She actually became a swimmer on the Special Olympics team. We did all sorts of things that friends do. Our families have kept in contact this whole time. And I've been so proud to see all she's accomplished.

I learned early on that just because someone has an extra chromosome and has some differences as a result, they're still an amazing person. They still have so much to offer. I mean, I was the asthmatic kid, allergic to everything. And I was in the school nurse's office all the time. So I also felt like I was a bit defective. We all are a little off in our own ways.

Parents are often overwhelmed when they have a new baby with special needs. And as their pediatrician, I serve as sort of a gatekeeper for all the specialists. My job is to take care of the well child visits, the usual colds and ear infections, and help manage some straightforward issues that most pediatricians are comfortable doing.

When a child needs a specialist, I know exactly who to refer them to. And the specialists and I coordinate together to make sure the child has all their healthcare needs addressed. It's called the medical home model. It's basically a community of doctors all working together, like a wheel with all the spokes of the wheel being the specialists, and the hubcap being the pediatrician. Depending on the needs of the child, the pediatrician also gets home health nursing involved or speech or physical therapists. Often we're the ones that fill out a lot of the paperwork for the insurance companies too and refill prescriptions for supplies if a child has a feeding tube or needs diapers long term.

Often one of the specialists is a pediatrician who has had additional training and certification in complex care management. That is someone I routinely refer my patients to, because they are an amazing resource and also help coordinate the specialists. They often try to make sure that a patient, if they are coming for a visit, have all of the specialists in the visit at once, so it's easier to make sure everyone is on the same page and can get extra help from dieticians, care manager nurses, and social workers if needed. Again, all part of the community of doctors caring for special needs kids.

Trust me, we as pediatricians love your kids as much as you do. And when they make certain milestones, we celebrate with you. I get so excited when I see my cerebral palsy kids walk into a clinic on their own. And I know that every child I see with Down syndrome means I'm guaranteed extra hugs that day. Special needs doesn't always mean limited, negative quality of life. Although their care will be certainly filled with challenges, it's our job as pediatricians to help you along your child's journey to reach their full potential.

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