Each year, one in 100 babies is born with a congenital heart defect. Twenty-five percent of these babies will have a critical congenital heart defect, requiring surgical or catheter-based intervention in the first year of life.
Noah France is one of them, born with hypoplastic left heart syndrome, a congenital heart defect in which the left side of the heart is underdeveloped. This requires three open heart surgeries within the first three years of life. Noah recently underwent his third surgery at the Bernard & Millie Duker Children’s Hospital at Albany Medical Center.
Tyliana Bernier of Ilion is four, and also being treated at the hospital for her ventricular septal defect, the most common type of congenital heart defect.
In July, Noah and Tyliana received one of the Cardiac Care Bags provided to children who have recently had open-heart surgery. The care bags program was begun by the Cardiac Kids 518 group of the American Heart Association, a group of children born with congenital heart defects and their families.
“When your child has just had open-heart surgery, it’s hard to think about anything except their recovery,” said Jennifer Corcoran Conway, a lawyer for New York State, the parent lead of the Cardiac kids 518 group, past board chair of the American Heart Association, and mother of 11-year-old Aedan, who was born with hypoplastic left heart syndrome. “Our group began putting the bags together to support the fierce Heart Warriors that our children are, and to let their parents know that they don’t have to walk this difficult journey alone.”
After a pause caused by the pandemic, the families have again begun to gather regularly for fun and support. Their most recent trip was to the Valley Cats game at the Joe Bruno Stadium, where 12-year-old Colton Berlin of Mayfield threw out the first pitch. Colton was also born with a congenital heart defect, and he will be the Heart Hero of the Capital Region Heart Walk and Run in June 2024.
Because the Cardiac Kids hadn’t met for a while, they also hadn’t replenished the supply of the Cardiac Care Bags. Kimberley Branigan, pediatric cardiology nurse practitioner at Albany Medical Center, a member of the Albany Med Health System, brought the program back to life this year.
Albany Medical Center pediatric cardiologist Jess Randall, M.D., secured a grant from The Dominic Ferraioli Foundation to help fund the project.
In February, Albany County’s monthly reusable insulated grocery bag featured a design created by Gabe Greenberg of Delmar, the 2021 Heart Hero of the Capital Region Heart Walk, one of the Cardiac Kids. Branigan led the charge to have these bags filled with items that children and families will find useful while staying in the hospital, like parking passes, gift cards for food, notebooks, plush blankets, cardiac pillows, and books about congenital cardiac disease.
“I’m so glad we’re able to revive the care bags program as a way to provide more comfort and support to our heart warriors and their families, who inspire me every day,” said Branigan, who was also the winner of the American Heart Association’s Leader of Impact program this year. “It’s an absolute privilege to be a part of their cardiac journey and post operative recovery. I also want to thank the Dominic Ferraioli Foundation for helping to make this program possible.”
For information about the Cardiac Kids program, contact [email protected].