After a routine ultrasound twenty weeks into her pregnancy, Jodi Lemacks heard the words no parent ever wants to hear:
Your baby has a heart defect. It is one hundred percent
fatal unless he has three open-heart surgeries. She and her husband, Mark, were devastated. This was the couple’s third child. They had two healthy boys and no history of heart defects in their families.
Immediately, they began looking for options that would allow the best chance for their child to survive. They also looked for people to talk to who had been through the same thing. Despite support from family and friends, they felt very lost and alone. Unfortunately, there were no support groups for families with children with heart defects in the Richmond area.
Two years later, in 2005, with the support of pediatric cardiologist William Moskowitz of VCU Medical Center, Lemacks founded the Mended Little Hearts (MLH) chapter in the Richmond area. MLH is an off-shoot of Mended Hearts, a national non-profit Organization providing hope and support to heart patients since 1951.
Today, with Jennifer Smith and Rebecca Mannion at the helm, MLH strives to connect families with children who have congenital heart defects and to provide Education and support. Smith, whose third child was born with a congenital heart defect, joined the group to network with other heart moms. Mannion, whose 7-year-old daughter was born with dilated cardiomyopathy, says, “I have found such comfort in hearing the other stories from heart families, even if their child doesn’t have the same diagnosis. It is an amazing, instant bond that heart families have with each other.” Mannion says uniting parents and families not only gives hope, but also provides comfort when someone is there to answer the non-medical questions they might have. “Kids with heart defects also can connect and find others like them with the same scars,” adds Mannion.
Throughout the year, MLH sponsors programs with safe and stress-free activities for kids, and educational and medical Speakers for parents, including pediatric cardiologists, surgeons, nurses, technicians, social workers, and others who care for their children. Families can also learn about early intervention programs, stress management resources, school programs, and outreach opportunities like Starlight Escapes for families coping with chronic illness.
“Many people feel like one of the best services MLH provides is the care bag program for families who have children in the hospital,” says Mannion. Most children in Richmond born with a heart defect requiring surgery will have surgery outside of Richmond, many unexpectedly. MLH gives these families care bags full of items to make the families hospital stay easier. “Parents often tell us that when they get the care bag they feel like someone truly understands them, and they have more hope they will make it through this very difficult time.”
Ultimately, according to Jennifer Smith, meeting other families who are dealing with similar circumstances through MLH is Reassuring. “When you interact with people who have kids who are six or seven – or even seventeen – you see that life goes on and that there is some degree of normal down the road,” says Smith. “And that’s very important when your children have a rocky start.”