Sunday, August 5, 2018

Spina bifida

I don't share my history with families so they can make their own decisions.

By Mary Austin, M.D.

When you spend most of your childhood in doctors' offices like I did, it's easy to become fascinated with medicine at an early age. I was diagnosed at birth with spina bifida, a condition in which the spinal cord fails to develop properly, leaving the nerves exposed on the back. My first operation to repair the hole in my lower back happened within the first days of my life. Doctors warned my family I may never walk, but my mom, who was a physical therapist, refused to believe them. And she was right.

I never had trouble walking, but I suffered other complications over the years that would require multiple visits to clinics and hospitals. I met many excellent medical professionals who helped me cope with the difficulties I experienced. But I also met others who lacked the empathy and humanity I craved as a young patient.

By the time I was in kindergarten, I knew I wanted to be a doctor. As a teenager, I knew I did not want to be just any doctor but a doctor who would work to heal other kids like me—addressing their physical and emotional needs as patients. As a kid, I was embarrassed by my condition and kept it quite private only telling my closest friends.

All too often, I let my fear keep me from pursuing activities I loved, like running. I was scared my neurogenic bladder and bowel would embarrass me. In the small town of Kentucky where I grew up, I never met anyone else who seemed to be facing the same challenges.

It wasn't until I was well into my surgical residency at Vanderbilt University Medical Center I finally opened up about my medical problems, first to my mentor, a pediatric surgeon who ultimately became a dear friend, and later to others including my husband-to-be, a pediatric oncologist at Texas Children's Hospital and Baylor College of Medicine.

After finishing fellowships in surgical critical care and pediatric surgery at Children's Hospital Los Angeles, I was lucky enough to land a position as an assistant professor in pediatric surgery at McGovern Medical School at UTHealth, which has an academic affiliation with Children's Memorial Hermann Hospital. Shortly thereafter, I found myself working with a phenomenal group of physicians at The Fetal Center at Children's Memorial Hermann Hospital who were among a select group in the United States pioneering a specialized surgery to repair spina bifida lesions in utero.

As a pediatric surgeon, I get to meet with couples who have recently discovered their unborn child has spina bifida and help them understand their options. I don't share with them my history because I would prefer for them to make their decision based on the scientific evidence and their beliefs. But it is gratifying to be able to be a part of a groundbreaking treatment that is changing the way spina bifida lesions are treated. It gives children and parents a much more optimistic future.

I remain as awestruck today as I did when I was a kid about the capabilities of medicine to heal, to transform lives and to reach new heights. As a young woman, I never thought I would be able to have children because of my spina bifida diagnosis. Yet, I was able to carry and deliver three healthy daughters, even as I leaned on my high-risk obstetrician and my colleagues at The Fetal Center to help me deal with the complications that arose during my pregnancies.

Motherhood has only galvanized the commitment I made many years ago to do everything I can to help children and families struggling with tough diagnoses. I'm grateful every day for the chance to be a part of their lives and to hopefully make a positive difference.

No comments:

Post a Comment