Column: Moms looking out for daughters who need special medical treatment

Published May 9 2018
Updated May 13 2018

Five years ago, shortly after celebrating Motherís Day, my mom watched as her oldest child was wheeled into brain surgery to undergo a procedure to help cope with the symptoms of early Parkinsonís disease.

The operation, known as Deep Brain Stimulation or DBS, was performed by Dr. Donald Smith at Tampa General Hospital. It calls for inserting wires in the brain that snake around the back of your head and connect to neurotransmitters implanted in your chest. Despite the obvious risks of brain surgery it has improved my quality of life immensely. So has the care and attention provided by my Parkinsonís specialist, Dr. Robert Hauser, head of the University of South Floridaís Parkinsonís Disease and Movement Disorder Center.

It takes a special kind of mom to be the mom of a chronically ill child and it takes a special kind of doctor to handle chronically ill patients.

Iím lucky enough to have both. So is 8-year-old St. Petersburg resident Annabelle Brassfield, a twin born with a severe congenital heart defect. The condition was discovered prenatally, so Annabelle has had a team of specialists caring for her since before birth.

"Having that continuity of care is so important for people with chronic conditions or who are medically fragile," says Kate Brassfield, Annabelleís mom.

Others may not be so lucky as Annabelle and myself.

By 2025, 25 percent of Americans will have some kind of chronic illness. But the Association of American Medical Colleges, which represents medical schools and teaching hospitals, reports that "the United States faces a shortage of as many as 90,000 physicians by 2025, including a critical need for specialists to treat an aging population that will increasingly live with chronic disease" according to a March 2015 Washington Post article.

Then, in 2016, the American Academy of Pediatrics, the nationís largest group of pediatricians, released a statement warning that "a shortage of pediatric medical specialists combined with growing numbers of children with chronic health problems and special medical needs" was prompting a call for revamping the way graduate medical education was funded.

It is Annabelleís pediatrician, Dr. Lori McAuliffe, and her pediatric cardiologist, Dr. Stephanie Kurtz, whom Annabelleís mom raves about the most. "All the usual childhood ailments take on a greater concern when you have a kiddo with half a heart," says Brassfield.

While no one would think Annabelle and I have anything in common, we both have moms who care deeply about us and our health and doctors that share certain qualities.

First, our doctors have developed relationships with their patients so while you may be part of the hundreds of patients they see, you feel like the most important one.

"Our pediatrician is able to make little adjustments and recommendations specific to Annabelle because she has that relationship with us," Brassfield said. "She knows Annabelleís specific needs and what our family as a whole needs."

I knew Dr. Hauser was the right doctor for me when he didnít shy away from treating a journalist with endless questions. The first time I visited Dr. Smith he rejected me for DBS saying my Parkinsonís wasnít severe enough. I was encouraged that he was not advocating needless surgery.

Second, our doctors and staffs are consistently available and frankly, awesome.

When Annabelle was hospitalized in March with a respiratory problem her regular cardiologist was not on duty. "No one knows my childís unique anatomy and physiology better, so while I trusted the hospital medical team on staff, I still texted the cardiologistÖand having her in the loop made all of us feel better ó me, theÖ doctors and nurses..and of course, Annabelle!"

Kelly and Tara in Dr. Hauserís office and Terri and LuAnn in Dr. Smithís office promptly answer my emails or calls. They are always helpful, reassuring and honest. They make me feel I can cope with what lies ahead. Both Annabelle and I live in a world of endless doctor visits. Weíre lucky those visits make us feel better.

Just like our moms make us feel better. Happy Motherís Day to my mom, Sylvia; Kate Brassfield and all the moms of chronically ill children ó be they adults or children ó and thank you to the doctors who take care of us.

Marilyn Garateix is a former editor at the Tampa BayTimes and Kate Brassfield is a former copy editor at the Times.

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