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Title V Technical Assistance Meeting

 Real Life Story

Asha.jpgBy Asha Purhoit 
Ryan Colburn Scholarship Awardee

When you're born with an obvious congenital defect, like a cleft lip and palate, the care coordination is likely to start from day one. Growing up, my mom told me the story of the self-assured plastic surgeon we met before I'd even seen my pediatrician. He swooped into the room all smiles and confidence and reassured her, "we'll do this…and a little bit of this," (while motioning his hands) "and it will be all done!" Granted, the long-term care required for a craniofacial defect is a bit more involved. Following the two surgeries to repair my cleft lip and palate as an infant, there were numerous procedures including multiple tubes in my ears, orthodonture, repair of my sinuses, and orthognatic repair of my jaws.            

Although I was in the neonatal intensive care unit (NICU) and followed closely as an infant, it was my pediatrician who heard a murmur, leading to the diagnosis of a bicuspid aortic valve (BAV). Growing up, all I knew about BAV was, structurally, what it meant for my heart and that any time I had dental/orthodontic procedures (pretty darn often), I had to take a large dose of antibiotics, a recommendation that has since changed. I don't recall ever being told that I may someday require a valve replacement, but I know my parents were. In middle school, I experienced some palpitations and was fitted with a Holter monitor. Nothing specific was found, and this is the last time I recall having any contact with a cardiologist…until I was 24.

From what I gather, this is where my care dropped off. I should have been followed throughout childhood, adolescence and transitioned to an adult cardiologist. Instead, my mom happened to have a conversation while volunteering with a cardiologist at a free clinic. When she mentioned my BAV, he told her pretty clearly that I needed to get a baseline and be followed. In July 2013 I saw my adult cardiologist for the first time and was told my aorta, although slightly enlarged, seemed fine. Given we had no baseline measurement of my aorta or of the valve, we planned to follow-up a year later. In July 2014, I was diagnosed with a thoracic aortic aneurysm. My activity was restricted, as I had been training with a CrossFit gym, competing, and lifting heavy weights very often. However, I was told not to worry, we would follow-up in another six months.

When I want to know about something, I read. So, I began reading everything and anything I could find about thoracic aortic aneurysms, dissection, and at what point surgery is indicated. The biggest thing I kept taking away was that the condition was asymptomatic. I shouldn't feel anything. So when I started to have chest pains six weeks later, I ignored them. When I finally went to the ER, my aorta had grown significantly and I was transported and admitted for surgery.

In the case of my cleft lip and palate, I had a clear transition plan from doctor to doctor, and procedure to procedure. My BAV was not monitored in the same fashion. What I can hope is, much of this would have been different if I was born later, given the increasing focus on care coordination and parent education in the health field. However, just because changes have been made, doesn't mean there isn't room for further improvements. Based on my own experience, while there may be one primary and more pressing diagnoses, we cannot forget the necessity of care coordination and transition as individuals deal with multiple and complicated health care needs that can span a lifetime.