Congenital heart disease is considered the most common birth defect in children. The March of Dimes lists CHD as No. 1, as over 25,000 babies are born every year with a congenital heart defect. Worldwide, it is a leading cause of birth defect-related deaths.
February is Congenital Heart Defect Awareness Month, and Wayverly Mouse-Evangelista shares her child’s story to help raise awareness of CHDs. Her son, Tai Honu, was just 3 weeks old when he was diagnosed with double outlet right ventricle, or DORV, which means there is a hole in the middle of his heart.
“He spent the first six weeks right after birth in a neonatal intensive care unit. For three weeks, he had been breathing very rapidly,” she said. “They were giving him medicine for that, but the medicine wasn’t working. His admitting doctor ordered a a second echocardiogram, and that’s when they found the heart defect.”
Mouse-Evangelista’s son was prescribed Sildenafil and Digoxin to lower his heart rate, since that was the current course of treatment at the time. She conducted research into her son’s condition and discovered that open-heart surgery may be needed.
“He had surgery May 27, 2010, at The Children’s Hospital at St. Francis in Tulsa,” she said. “The cardiologist told us they wanted to wait until he was a least a year old before he had his open-heart surgery.”
According to Mouse-Evangelista, the reason he had the surgery when he was 10-1/2 months old was because he went into heart failure.
“His name means ‘strong turtle,’ and we didn’t have any idea he had heart disease when we picked out his name,” she said. “My dad also has heart disease, and when he found [his grandson] had a heart defect, it just brought them closer together. He’s been to every birthday party that he’s had, and also his heart anniversary. We celebrate the day of his open-heart surgery.”
Her father has helped with fundraisers, and has met people in similar situations and passes on information to them.
“He tells them, ‘Give her a call and she can give you more information about what may happen in the future,’” said Mouse-Evangelista. “He’s very supportive in the volunteer work that I do.”
Mouse-Evangelista is a contact person for Mended Little Hearts of Tulsa, and is also the national care bag coordinator. Mended Little Hearts, a nonprofit, volunteer-based organization established in 1951, has community support grounds in Tulsa and Oklahoma City and around the nation. The group provides hope, help and healing to heart patients and their families.
“Right now, along with the DORV, [Tai] has three ventricular septal defects,” she said. “VSDs are holes in his heart, and he also has pulmonary stenosis, which is the narrowing the pulmonary valve.”
The parents have to pay particular attention to the pulmonary Stenosis as Tai gets older. They visit the cardiologist once a year – which, given the child’s condition, is good.
Tai Honu’s grandfather, Bobby Mouse of Tahlequah, hadn’t heard a lot about CHDs until his grandson was diagnosed.
“Nobody knows anything about little hearts like his,” said Mouse. “I didn’t know anything about it until my grandson [was diagnosed with it]. Now every time she has a meeting or something like that, I usually take time to go see them and help them with what they’re doing. I’ve done quit a bit with her.”
The Tulsa Mended Little Hearts group has a Facebook page, and meets the second Monday of month from 6:30 to 8:30 p.m. at St. Francis Heart Hospital, 6151 S. Yale Ave., on the basement level in classrooms A and B.
Tahlequah does not have a support group, but Mouse-Evangelista urges families that need the information and support that’s offered by Mended Little Hearts to contact her.
“We pretty much serve the greater Northeastern Oklahoma area,” she said. “We don’t just have members in Tulsa. I’ve had contact with a family in Marble City and Kansas,” she said “[The mother in Marble City] is actually doing a care bag drive during the CHD Awareness Week, Feb. 7-14.”
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