The emotional roller-coaster of having a child with a congenital heart disease can range from any number of feelings: shocked, scared, heartbroken, or even numb. Parents must make decisions on how to care for their newborns quickly to ensure their baby’s well-being and put their unwavering trust in caregivers while wondering what’s next for their little ones.
The same can be said for Andrea Francis, a mother of twin boys from Rochester. She and her husband, Shawn, learned while their twins were in utero that one of them, named Keegan, would be born with transposition of the great arteries (TGA), which occurs when the two main arteries going out of the heart—the pulmonary artery and the aorta—are switched in position.
When Keegan and his brother, Aiden, were born in April 2013, Andrea and Shawn were scared, holding onto hope and wondering what the future would hold. Keegan was rushed to the neonatal intensive care unit (NICU) at UR Medicine’s Golisano Children’s Hospital after birth. Shortly thereafter, his condition worsened to a point that he was transferred to the pediatric cardiac intensive care unit (PCICU). Keegan was placed on extracorporeal membrane oxygenation (ECMO) to provide respiratory and cardiac support prior to his surgery.
Keegan would need to have an arterial switch operation. All Andrea and Shawn could do was watch and hope for the best.
That’s where Mended Little Hearts of Greater Rochester came in.
“The representatives from Mended Little Hearts were a tremendous resource for us,” said Andrea. “They were there just to talk, share their story, be a shoulder to cry on, and comfort us because they had been through what we were going through.”
Mended Little Hearts, a nationwide group with local chapters, was started in Rochester in 2010 when Jennifer Kowal, saw a need for a peer to peer support group for families getting procedures and treatment at Golisano Children’s Hospital. She saw a need for a local chapter after her daughter was diagnosed in utero with an underdeveloped heart. Its mission was simple: to provide hope and support to families affected by general heart defects.
Keegan was just 13 days old on the date of his open heart surgery. The procedure, performed by George Alfieris, M.D., was successful and Keegan is now three years old.
The impact that Mended Little Hearts made on Andrea was so profound that it empowered her to get involved with the mission. She felt a need to want to help families who were going through what her family did.
“I know how scary it is. It feels unfair during the moment,” said Andrea. “But you have to hold onto hope, trust in the doctors and nurses, knowing they’ll do everything they possibly can to save your child to give them an opportunity at a healthy life.”
The care team at Golisano Children’s Hospital knows the importance of having a support group like Mended Little Hearts, too.
“At Golisano Children’s Hospital, we know that providing support and resources for families is fundamental in the care of our children with congenital heart disease,” said Jill Cholette, M.D., assistant professor of Pediatrics. “The nurses, physician's and staff at the children’s hospital are active participants in the Mended Little Hearts organization and we strive to work together to improve the health and well-being of the children and families we care for.”
Since Keegan’s surgery in 2013, Andrea has become increasingly more involved in Mended Little Hearts. She is now the Lead Coordinator and helping families like hers navigate through the difficulties of congenital heart disease.
To get in contact with Mended Little Hearts of Greater Rochester, visit http://www.mlhrochesterny.shutterfly.com