South Merrick resident and mother of two Melanie Tucker always knew she wanted to write a book about congenital heart disease, after her son Asher was born with the condition Tetralogy of Fallot four and a half years ago. Last year, before his third-open heart surgery in October, Tucker wrote a children’s paperback picture book, “Super Scar,” which was published in August.
“[Congenital heart defects] are more common than people may think,” Tucker told the Herald. “Any baby can have one — and it doesn’t have to be genetic.”
Tucker, who works in publishing, has a CHD called bicuspid aortic valve, so there was a higher chance that her children would have one as well. She and her husband, Seth Tucker, found out that Asher would be born with a heart defect during her 20-week scan. Their older son, Levi, 5, has a normal heart.
According to the Centers for Disease Control and Prevention, CHDs affect 1 percent of all births in the U.S., or about 40,000 infants per year. There are more than 40 known types of heart defects, the Children’s Heart Foundation notes. The CDC’s website states that about 1 in 4 of these defects are considered critical, and they are a leading cause of birth defect-associated infant illness and death. Many can be detected prior to birth, and with proper treatment and monitoring, children are often able to live normal, healthy lives.
Asher’s condition, Tetralogy of Fallot, is characterized by four defects, his mother explained: pulmonary stenosis, the narrowing of the exit from the heart’s right ventricle; a ventricle septal defect, or hole in the heart; a right ventricular hypertrophy, the thickening of the right ventricular muscle; and overriding aorta, in which the aorta expands to allow blood from both ventricles to enter the heart. About 1 in 2,000 babies born with a CHD are diagnosed with Tetralogy of Fallot.
Tucker said that learning about Asher’s condition before he was born was helpful, because even through it was a shock, she and Seth were able to prepare for his birth, meet with doctors and learn more about the defects.
Tetralogy of Fallot, which is considered a “complex” CHD, is treated with open-heart surgeries and lifelong close monitoring. Asher had two open-heart surgeries as an infant, at 2½ and 5 months old. His most recent surgery was last October.
Tucker’s motivation to write the book was simple: as Asher got older, he became more aware of the scar on his chest from his surgeries. “Super Scar” tells the story of a young boy who has a heart surgery scar. Although he may face challenges, the scar reminds him how brave and special he is.
“I wanted a simple way to explain it to him, that yes, his heart is different,” Tucker said. “That’s why I got the idea to do this book. Now [Asher] has this super scar on his chest, and it gives him superpowers and confidence so that he can handle anything moving forward.”
Tucker self-published the book through Amazon, where it is available for purchase, and hired a freelance illustrator to create the pictures. Promoting the book on Facebook, she said that, so far, the reviews have been positive. “One person said it was a great boost of confidence for their kid who has a similar scar,” she noted.
Congenital Heart Defect Awareness Week takes place every year, Feb. 7-14. Many organizations, such as Mended Little Hearts and Conquering CHD, work closely with families to provide support, research and advocacy. The Children’s Heart Foundation funds CHD research and organizes a walk every year at Sunken Meadow State Park to raise money.
Seth Tucker said that they are already seeing the positive effects of the book at home: Levi has been understanding of his brother’s differences. “He’s naturally curious,” Seth said of Levi. “When Asher came home from his most recent surgery, he’s been very encouraging. He’s a very supportive older brother.”
“I wanted my son who’s older, and clearly sees his scars, to understand that there are people with this,” Melanie added.
“Super Scar” is “very basic,” according to Melanie, who said the intended audience would be children ages 3 to 6. “Nothing is too detailed to go over their heads or scare them,” she said.
She donated copies of the book to patients at the Morgan Stanley Children’s Hospital at New York Presbyterian in Manhattan, where Asher had most of his surgeries.
For him and other children with CHDs, “Super Scar” is all about boosting confidence. “My motivation was for him to see representation of himself in the book,” she said. “It shows how brave and strong he really is.”