INDEPENDENCE -- Soraya Mejia squeals with delight as she bats the toys dangling from her colorful play gym.

Her eyes light up and a small giggle escapes her lips as her mother, Amanda, picks her up and showers her with kisses. Developmentally, this 8-month-old girl is on track. She crawls and pulls herself up. She claps and waves on demand.

Soraya appears to be a perfect picture of health.

Until her mother lifts up her little pink shirt to expose the nearly 5-inch scar on her chest.

Soraya was just hours old when a Covenant Medical Center nurse detected what sounded like a murmur in the baby's heart. The newborn was examined by her pediatrician. He referred her to Dr. Samir Chandra, a pediatric cardiologist for Covenant, who gave the parents the diagnosis -- aortic left ventricular tunnel. The rare congenital heart defect results in an extra tunnel for blood flow, which eventually weakens the function of the heart.

Soraya was transferred to the University of Iowa Hospitals and Clinics within 24 hours. There doctors performed open heart surgery to close the tunnel. The newborn bounced back quickly and returned home in less than two weeks.

"They told us they had never done one of these surgeries in Iowa City," said Juan Mejia, Soraya's father. "We still don't know if she will need another surgery in another month or another year or ever."

The Mejias said those first few days were the toughest as they adjusted to their roles as new parents and caretakers for an infant with a heart condition. The doctors did their best to warn the family of what to expect, but sometimes the Mejias had questions they couldn't answer. They needed the advice and comfort of a family who had walked a similar road.

"We can offer the medical care, but a lot of the families ask questions that aren't medical," Chandra said. "It's inspiring for families to see a child at 5 years old going to school and playing on the playground."

This intrinsic need for family support was the driving force behind the creation of Heart Friends, a support group for families of children with congenital heart defects. The group started in 2000 for all families treated in Iowa City. The organization holds biannual social events and meetings to focus on education, said Trudy Pierick, an advanced registered nurse practitioner and Heart Friends volunteer at the Iowa City Hospitals and Clinics.

Elly Steffen and Chris Schneider, both Waverly mothers of sons with a heart defect, tried to attend the Iowa City functions. They knew the value of meeting other families who have walked their paths, but found it difficult to carve out the time in their busy schedules. That's when they decided to partner with the Iowa City organization and Covenant Medical Center to begin a Waterloo chapter.

"We didn't have anyone locally when Jack was diagnosed. We had a family friend whose daughter had a similar condition but they lived four hours away," said Schneider, whose 4-year-old son Jack has a single ventricle, three-chambered heart. "I thought I was the only one who lived around here. … When you have that baby, it gives you hope to see an older child. Even now, I am looking to connect with someone whose child has the same condition to see what the next five years will bring."

The group hopes to meet every other month for educational and emotional support and to eventually begin fundraising for the American Heart Association. Steffen said everyone, including extended family members, are invited to attend. The Mejias have already said they will be regular participants.

"We want to meet as many people's needs as we can," Steffen said. "We want to provide support to the families and their kids, so we can learn from each other's experiences and celebrate these children. They are miracles, amazing miracles."

Contact Emily Christensen at (319) 291-1570 or emily.christensen@wcfcourier.com.