My son Graeme was born on Dec. 21, 2012, at Children’s Hospital of Philadelphia’s (CHOP’s) Special Delivery Unit (SDU). My husband, Ian, and I found out at my 20-week ultrasound that something was wrong with our baby’s heart and were referred to CHOP’s Fetal Heart Program. There, the doctors confirmed that Graeme had transposition of the great arteries (TGA), a ventricular septal defect (VSD) and pulmonary stenosis (PS). I continued my OBGYN appointments at CHOP, where we could watch Graeme closely and prepare for his birth. My pregnancy was stressful, but I felt confident and as ready as I could be for Graeme’s arrival.
After being in labor for a brief 45 minutes, and barely making it to the SDU in time, Graeme was born! I will never forget when his cardiologist, Dr. Szwast, came to visit us in the Cardiac Intensive Care Unit on Christmas Eve. I think she was on her way to visit family for the holiday, but she stopped by to make sure we were okay.
Graeme had open-heart surgery (a B-T shunt) when he was 14 days old. This procedure allowed him to grow enough for his next surgery. I don’t remember much from those first eight months. Between pumping milk every few hours, tube feeding, administering medications and going back to work full-time, my husband and I were truly in survival-mode.
Graeme had his second open-heart surgery (the Nikaidoh procedure) at eight months old with Dr. Spray. After this surgery, Graeme began to thrive! He started to love food; play with his older brother, Oliver; and even catch up on milestones. While Graeme has been feisty since the day he was born, his personality began to shine, and he was an all-around happy baby.
Today, you would never know that Graeme has been through so much. Now 9, he is a healthy, normal kid who enjoys school, soccer, riding his bike, traveling to new places and just loves life. He has check-ups at the Cardiac Center every six months, and he will need future surgeries down the road. While we live a fairly normal life, I never take it for granted.
Our journey with CHD has been difficult, but with the support of family, friends, and other cardiac families, we’ve learned to appreciate life and not sweat the small stuff. The support and friendships I’ve developed with other heart moms has been so important. I find hope and strength in volunteering, connecting with other families and serving on the Cardiac Center Family Council. It’s important for me to share our story because it raises awareness about CHD, supports funding for CHD research and lets other families know they aren’t alone.
Philly Heart Moms Facebook Group
(Elise is an administrator. Email firstname.lastname@example.org to be added to the group!)