“Giving back and helping others is one of the best feelings. To know you helped someone when they were feeling scared and alone.”
– Allison, Former Patient, Current Nemours Associate
I’m Allison and I’m 26 years old and I work in the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware in Wilmington. I was diagnosed at birth with Tetralogy of Fallot with anomalous origin of the anterior descending coronary artery from the right coronary artery. I had my first open heart surgery at 4 days old for the transannular patch to repair the ventricular septal defect (VSD). In all, I had three open heart surgeries (two in 1998 and one 2013), six cardiac catheterizations and two loop recorders (in 2020 and 2023, respectively).
I was also diagnosed at birth with hip dysplasia in my left hip, and I wore a Pavlik harness [a shoulder harness that attaches to foot stirrups] to try and straighten the hips. I also had a spinal fusion on my back in 2009.
As an infant I was also in the care of otolaryngology (ear, nose and throat, or “ent”) for multiple ear infections, ear bleeds and clogged ears. I got my first set of ear tubes in 2000 when I was 2 years old. My adenoids were removed in 2002 and I had a tympanoplasty (repair a hole in the eardrum) in 2008 to address marginal perforation of my tympanic membrane.
Treatment at Nemours Children’s
Nemours was a second home to me. I grew up at Nemours, whether it be an appointment or a procedure, I spent a lot of my childhood at Nemours. All the staff at Nemours treats you like family; they care for as if you are one of their own.
My last major cardiac procedure was in 2013 when I had my pulmonary valve replacement. A number of the cardiologists who have been part of my team still work at Nemours, including: Joel D. Temple, MD, Sean Daniel Connolly, DO and Erica Del Grippo, DO. Overall, I feel great. My heart is overall doing well and I live mostly a normal life. I am currently an echo sonographer at Nemours Children’s in Delaware. Being born with a congenital heart defect consists of lifelong appointments.
As for my ears, they also recovered well. I still get ear infections on and off and get ringing in my ears. And regarding the orthopedic care, my back is doing great; the biggest learning curve was to not be able to play contact sports after the surgery in 2009.
Advice for Patients and Future Plans
The most rewarding part about working in the Cardiac Center at Nemours is being able to give parents and current patients hope for their future. I’ve shared my story with countless people that I’ve met at Nemours, and I’ve mentioned how all my surgeries as a child were done here. The parents and patients feel more at ease to see that someone in their shoes can live a pretty normal life. Giving back and helping others is one of the best feelings. To know you helped someone when they were feeling scared and alone.
I plan to continue working at Nemours in the Cardiac Center doing echocardiograms. Working at Nemours is something I’ve always dreamed about; there is nothing more rewarding than giving back to the place that saved your life and to help others. I will never “recover” exactly, as congenital heart disease is a lifelong commitment consisting of medications, appointments and surgeries.
