'Mended Little Hearts' Formed For Parents Of Children With Heart Problems

When Melanie Toth was 20 weeks pregnant, she was shocked to received news her child had congenital heart disease.

Toth and her husband, who live on Chicago's Northwest Side near Niles, had no idea what the rare condition, tetralogy of fallot,  caused by the combination of four heart defects, would mean for the kind of life their family would be living.  

The many types of congenital heart disease – heart problems present at birth – all have the same devastating effects on parents. It’s an unexpected diagnosis of often little understood conditions that can mean uncertain futures.

Toth’s doctor directed them to Bettina Cuneo, M.D., a maternal fetal medicine specialist at Advocate Lutheran General Children’s Hospital, who helped the Toths to begin understanding the disease. After the clinical care and physician assurances, Toth found herself searching for something more. She wanted to talk to families to find out more about day to day life with this condition.

 “We had a phenomenal experience at the hospital and everyone was very supportive,” said Toth.  “I felt like the only thing that I was missing were other parents to talk to about congenital heart disease.”

“Doctors kept telling me that Luke was doing great, but I wanted another mom to reassure me.  I wanted someone who had been through the same experience to be there with me and now I want to be able to support other parents,” she said.

To find this support, she began researching groups around the country. Mended Little Hearts provided exactly what she needed as a parent: support, education, and networking.

Working alongside Lutheran General Children’s Hospital nurse Natalie Rudolph, APN, CNS, Toth has established a Mended Little Hearts group at the hospital.

Partnering with hospitals, Mended Little Hearts connects families in crisis with other parents who have survived the shock of learning a child has a heart problem, helps them navigate the maze of medical decisions and procedures and map out a plan for the future.

Mended Little Hearts launched this month at Lutheran General Children’s Hospital, and will be hosting a series of educational speakers.  More information is available by joining the Lutheran General Children’s Hospital Mended Little Hearts Facebook group.

In addition, fundraising for the group already has begun at Chili’s restaurant in Skokie. The restaurant is donating 10 percent of purchases to Mended Little Hearts when customers show a coupon.  The proceeds will provide funding for educational programs and care bags which are provided to families of children having surgery.