Thriving After Pediatric Stroke
The other day I received a message from a patients’ mother I took care of more than 15 years ago, during my residency. “He made it. Medically, mentally, physically, and academically, he did it!” She also attached his graduation picture. He is a man now. Where did the time go?
Max is a child who grabbed my heart in a very special way from the moment we met. By that time, he and his family were well accustomed to the hospital atmosphere; everyone knew Max and loved his smile. He is still one of the most adorable children I have ever known.
Max was almost 2 years old when I met him on the inpatient unit after admission for an infection. His mom had this air of confidence about her because she knew her son better than anyone in the world, yet she put up with those of us who were inexperienced residents still learning. During her pregnancy, ultrasound detected a small heart defect. At 6-8 weeks of age, he was taken to the catheter lab to have the defect fixed. He was still symptomatic after surgery, a repeat echocardiogram found a hole between the upper chambers of his heart, known as an Atrial Septal Defect or ASD.
He was two and half months when they performed open heart surgery to repair his ASD and during that operation, he sustained a stroke. The recovery was lengthy. The risk of stroke in children is higher in males and highest during the first year of life. Of those who survive, 50-80% have permanent neurologic deficits. Long-term disability is common including cognitive and sensory disorders, seizures, speech and language delays, poor attention, behavioral problems and poor quality of life. Max was in the hospital and quick diagnosis helped him not only to survive but ultimately, thrive.
Having a congenital heart defect is one of the major risk factors for stroke in children. Misdiagnosis is common because the symptoms are very different when compared to adults. In newborns, the first symptom is often seizures involving only one arm or leg. Max had other setbacks to overcome along the way including an arm abnormality which required multiple operations and other health issues complicated by his history of stroke. It seems like yesterday he was two and three years old and would come bounding into my clinic for well child and sick appointments like he owned the place.
There are a few reasons I decided to write about Max. First, I would like both him and his mother to know how proud I am of all they accomplished over the last decade and a half. He will graduate soon and plans to go on and attend an Art Institute out of state. Second, I hope this story gives hope to parents of children with congenital heart defects, prematurity, or any other disease or disability you feel stands in the way of your child achieving their dreams. Anything is possible.
During my final year of residency, I received an award for the Best Continuity Clinic. As a pediatrician who planned to return and practice in my hometown, it is an accomplishment of which I was proud. Max is part of the reason I received this award. He and his family taught me about the full spectrum of pediatric care: seeing him in my clinic, admitting him to the hospital a handful of times, and after one hospital discharge on a holiday weekend, making my first official “house call” to check on him.
In my opinion, the physician-patient relationship is the most powerful force existing in medicine today. It has kept my love for this career alive even on the worst days. Being part of a childs’ life and changing it in some small way for the better is something to treasure. Thank you for sending me school pictures over the years and thank you for letting me share this story. “Medically, mentally, physically, and academically, he did it!” There will be many triumphs for Max, there will also be many for other children who struggled early in life to survive.