An open letter to physicians about health care for adults who have Down syndrome

Dear Doctors,

I am the mother of a fairly health son who is twenty-seven years old and has Trisomy 21.

He was born when I was twenty-years old and inexperienced.  I had no point of reference about what it felt like to be a mother, much less what Down syndrome meant or entailed.  In my limited experience, the doctors, the professionals, knew best.  I counted on their knowledge to navigate the months after my son was born.  For the most part, I was lucky.  I had excellent health insurance which afforded me access to some of the best experts in the medical community.  We saw specialists in many fields at the Children’s National Medical Center in Washington, DC.

The sheer volume of information that I was given was both a blessing and a curse.  We were fortunate enough to be told what to look for and rule out.  We endured numerous tests that were admittedly frightening experiences.  Despite the fears, it was comforting to know that we were privileged enough to be able to get answers from highly respected physicians who understood Down syndrome.

I’m afraid I took this exposure to specialists for granted.  We lived outside of a major metropolitan area and were able to make the hour-long trip to see them.  It seemed as though that was “normal”:  if you have a child with special needs, you see the physicians who are specifically trained to treat them.

Josh's first birthday

It wasn’t until I had the specific honor of being introduced to Dr. George Capone from the Kennedy Kreiger Down Syndrome Clinic that I realized just how extra-ordinary access to this level of care really was.  My son was born with strabismus.  The surgery to correct his crossed-eyes was recommended to me by his eye specialist as a ‘matter of fact.’  I was afraid of putting such a young infant under general anesthesia, but believed that the doctors knew better than I did what the risks were.  I thought that they should be the ones to evaluate those risks and suggest the appropriate course of action.  It was Dr. Capone that reassured me that I was “allowed” to be afraid and even ask for the surgery to be postponed until after he was a year old.  Dr. Capone also calmed my fears about my son having limited hearing by explaining the affect of large earphones on small ear canals that can be associated with Down syndrome.

My son and I have since moved away from Maryland, but the lessons and compassion that I received from the Down Syndrome Clinic have stuck with me.  Over the years I sought every opportunity to hear Dr. Capone speak at national conventions.  This past week, I was elated to find that he was presenting at the United Nations meeting on health and well-being on World Down Syndrome Day.

Once again, I was the student listening intently to what he had to say about the current state of health care guidelines for adults who have Down syndrome.  It was almost as if he was speaking directly to me and the other parents who trusted him with our infant children so long ago.  Our children were now adults and he seemed to be saying that we needed more – that HE needed more information in order to continue to serve that generation of parents and patients.

Dr. Capone explained that is “often difficult at the level of primary care” to give adequate health care to individuals who belong to a “complex group who have co-occurring conditions.”  He also talked about the current lack of medical guidelines for patients over the age of 21.

As my son and I enter the next phase of development in our lives we find ourselves in much different circumstances.  We currently live in an extremely rural area with no access to specialists and extremely limited resources.  I worry about my inability to provide the same level of care for him as he ages.  His needs are different now and will only get more complex as time goes on.

I urge all physicians, general practitioners and specialists alike, to take the time necessary to develop the tools that are needed to care for this “complex” population.   Our children are living longer thanks, in part, to all the hard work and dedication of medical professionals.  I would like to think that level of commitment will follow our adult children.  We need your help.  Issues like thyroid disorders, cholesterol levels and the medicines to correct them, sleep apnea, and of course, Alzheimer’s disease are just as frightening to a parent caregiver as the initial fears we had.  We need to know that the doctors care as much for the adult population as they do the beautiful young children they encounter.

Thank you for making it possible to spend twenty seven wonderful years with my son.  I look forward with hope to many more!  Special thanks to Dr. Capone – without you I would have floundered as a young mother – please continue to be an example to others of how to inspire trust and teamwork between patients, their caregivers, and the professionals who treat them.

Sincerely,

Stephanie and Josh

Josh, an adult who has Down syndrome and his mother
Josh and his mother

 

 

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