09/02/2021
It's Congenital Heart Defect (CHD) Awareness Week. The Heart Institute at UPMC Children's helps children, teens, and adults with congenital heart disease live their lives to the fullest. Hear from one of our CHD families below.
“When our son Jake was only 6 days old, he was diagnosed with a critical congenital heart defect called tetralogy of Fallot. I remember Dr. Weinberg delivering this news to us, but when the words ‘open heart surgery’ came out of her mouth, we were all in complete shock. How could this beautiful baby have been born with a life-altering condition?
Determined to send our child to the best heart surgeon in the country, my husband, Nick, Jake’s grandparents, and I went to work researching the nation’s best pediatric cardiothoracic surgery programs. It took less than one day before we realized that the best care in the world is right here in Pittsburgh at UPMC Children’s. After speaking with Surgeon-in-Chief Victor Morell, MD, who co-directs the Heart Institute, our decision was made: Jake would have open heart surgery at UPMC Children’s on June 19, 2019. He would be just shy of 3 months old.
On that Wednesday morning in June, we brought our infant son to the Heart Institute for his repair, and by noon, baby Jake was wheeled off to the OR. Five hours later, the surgery was complete; Dr. Morell informed us of Jake’s successful repair and that he was able to spare the pulmonary valve.
Jake’s operation was only the beginning of his journey, as it was followed by a longer than anticipated stay in the Cardiac ICU. What made Jake’s recovery bearable, though, was his care. The unit is staffed with one-to-one nurses who monitor your child 24 hours a day and hold mom’s hand, too.
I can’t begin to explain how hard it is to see your once-happy baby hooked up to all of those machines. I wasn’t my best self then, seeing him like that. I cried many times. But from there, things got better. We were discharged nine days later and were able to take our son home. Not everyone is so fortunate.
It has been a year and a half since Jake’s open heart surgery. Despite ongoing follow-up visits and the extra precautions taken amid the COVID-19 pandemic, Jake is a healthy, happy child, who enjoys a relatively normal toddlerhood. Now almost 2, Jake loves to sing songs and read books, loves his toy farm animals, and can’t get enough pool time.
He is so strong, my Jake. It’s amazing to think of all he’s been through.” – Mia, Jake’s mom