Pediatric Cardiology by Sarah

Pediatric Cardiology by Sarah - August 2017 Scholarship Essay

Giving back to society can be done in numerous ways. In my mind I see giving back as fighting against injustice to make a difference. Injustice, from my recent perspective, is epitomized by the life of the patients and their parents in the pediatric cardiovascular intensive care unit. Through no fault of their own, children are fighting for their lives, enduring countless procedures, and their parents are on an emotional roller coaster with hope and dreams raised and dashed repeatedly. It is just not fair. Amazing care is provided, and the outcomes, with all the advances of medicine, can be nothing short of miraculous. It is the few, the cases which seem so unjust which have captured my heart, my conscience and inspired me to shift my career path toward health care law.
Pediatric cardiology is an ever advancing field with progressive technology and techniques. Neonates born with complicated congenital heart defects are surviving into adulthood and living full lives, something which would never have happened thirty years ago. As medicine improves and perfects its techniques, arrogance arises amongst the providers. The push for new and better tends to overshadow the past practices which have led to these improved outcomes. The unanswered and often unasked questions hang in the air: are these procedures for comfort, for realistic improvement or are they experimental with little hope of improved outcomes?
The case that changed me brought up all these unasked questions for a family with a medical background. At a twenty week ultrasound this couple is given the worst news, the structures of their unborn child’s heart are not developed the way they should be, doctors being using the phrase ‘Hypoplastic Left Heart Syndrome.’ Depending on the severity of underdevelopment in the heart, the doctors share the grim outlook for survival. Now instead of planning for celebration and the birth of this much anticipated baby, they begin to plan for a funeral. As the due date approaches, a time which should be joyous and celebratory causes anxiety and sadness. Instead of planning for a life, parents plan for coping mechanisms just to get through. When that baby is born and defies the odds, makes it through a surgery no one imagines possible, the parents get a glimmer of hope. They let their guard down and plan for a life of birthdays and baseball games.
For what these parents do not know, understand or cannot let themselves understand is the battle is far from over. When the day before discharge an infection sets in and the doctors say the chances of survival are slim, they must again set hope aside and wait. Wait to see if they will take home the active thriving little boy they so desperately want or wait to see if they return home to bury their first born. Who fights for this family through the ups and downs? Who asks the questions and can offer explanations in terms the parents will understand? When a doctor says - ‘your child has Hypoplastic Left Heart Syndrome and will require a three staged palliation - Norwood, Bidirectional Glenn and Fontan. The chances for survival are fair but there is a chance for stroke, hemorrhage, ECMO, and neurological deficits.’ Does any of that make sense? There is a missing link and lack of advocating for these patients and families to understand the complexities of the medical world.
Improved prenatal care affords babies to be born with such complicated hearts even the world’s finest surgeons are unable to palliate. Despite all the diagnostic testing available, babies are born with undiagnosed complicated heart abnormalities, necessitating emergency surgeries. Routine surgical repairs, which should have been straightforward, have unforeseen complications creating adverse outcomes. It is this work and this life that has ultimately led me to pursue a law degree. There will always be a heart that is too complicated to palliate but for the others, the missed diagnosis, the delayed treatment and the complications that occur, these injustices need the voice of an advocate.