Because my job involves being a liaison between health insurance enrollees and health plans, I frequently find myself talking to parents whose children need specialty care. Although they have “black and white” questions about benefits, providers, and copays, I hear something else in their voices. I hear the very non-definable and nondenominational parental prayer that everything will be okay.
As a parent, I have a sense of that place from which the parental prayer comes. I have been fortunate that neither of my children needed extended hospital care when they were young. My daughter’s broken foot at the age of three was a challenge but it has become more of a “childhood war story” than an experience that still affects her life and her attitude about the medical field.
When I had the opportunity to write this post, I consulted two friends whose children needed specialty care when they were young. J’s daughter had multiple surgeries for cleft palate when she was very small and has had other orthopedic procedures. N’s child was born with torticollis which caused plagiocephaly — as an infant he required a helmet, physical therapy, and many out-of-town specialist visits (as an older child he still needs specialized care for hypotonia, dyspraxia, visuospatial deficit and central auditory processing disorder). There were recurrent themes in each of their stories:
We know as adults what a pain it can be to navigate the medical system. Referrals, lengthy stays in waiting rooms, confusing lingo …. the list is endless. Dealing with coordination issues when your child is the patient is even more daunting. Both parents I spoke with talked about what a difference it makes when there is a concerted effort by the medical team to coordinate your child’s care. For example, J’s child needed two different dental procedures and the provider was persuaded to do them both while she was under anesthesia, instead of anesthetizing her twice. Things that don’t seem to make a difference on paper can make a world of difference for a child who has anxiety issues.
How Do They See My Child?
J. said it best: “At the moment that provider is seeing my child, I want it to feel like they are dealing with my child and my child only.” In my experience, specialists can be pushed for time, especially if they only visit your town monthly. Does the specialist put all that aside to look you and your child in the eyes, and then to explain to you as the parent what to expect?
What is the quality of their work?
One of J’s biggest recommendations is to research the success rate of a physician you are considering using for your child. If a facility is not transparent and forthcoming with data, think twice.
I am grateful to have an opportunity to share ideas about how to make the best choices for your child (and you) should they ever need specialty care. Thank you J and N for sharing your experiences.
The Hospital for Special Surgery (HSS), in New York City, is one option for pediatric specialty care, especially in the fields of orthopedics and rheumatology. HSS recently opened the CA Technologies Rehabilitation Center at the Children’s Pavilion providing comprehensive, individualized rehabilitation for both inpatients and outpatients from birth to 21 years. You can learn more about HSS via their website and their Facebook Page.
Both of my friends talked about the support and information they got from other parents. They encouraged anyone facing a specialty hospital stay for their child to take advantage of the hard-won expertise of parents who are farther down the road than you may be.
I promised you more about Gabrielle. As the parent of a dancer, I know how dismayed a motivated child can be to have physical symptoms keep her from dancing. Through HSS, Gabrielle has been successfully treated for pauciarticular juvenile arthritis. Her mother reports that she recently did a solo in a national competition and won a gold medal! Her complete story is here.
This video contains more information about the Hospital for Special Surgery:
I wrote this review while participating in a blog tour by Mom Central Consulting on behalf of Hospital for Special Surgery. A small donation to a charity of my choice was made in my name as a thank you for participating. You should consult with your physician or other health care provider before beginning any rehabilitation/therapy, sports training, or exercise program.
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.