More than 35,000 babies in the United States are born annually with congenital heart defects — structural problems that show up in the interior walls of the heart, the valves inside the heart, or the arteries and veins, according to
More than 35,000 babies in the United States are born annually with congenital heart defects — structural problems that show up in the interior walls of the heart, the valves inside the heart, or the arteries and veins, according to the National Heart, Lung and Blood Institute.
Dealing with this common birth defect, affecting eight out of every 1,000 newborns, can be confusing, consuming and emotionally taxing. Not wanting local families to struggle alone, Hawaii Island Kardiac Kids formed in October 2010, said member Grace Miyata.
Hawaii Island Kardiac Kids is a “very grassroots” support group for parents and children dealing with congenital heart defects. Members meet monthly to raise awareness about congenital heart defects and associated services. The group provides an outlet for members to share experiences, discuss emotions and talk about resources needed closer to home. It also allows members to be a resource to each other, Miyata said.
Parents provide each other with emotional support, encouragement and coping strategies that help them to support their child through countless medical procedures and surgeries. The group’s teen mentorship club allows older children to talk freely about their heart conditions, treatment, overcoming obstacles, implications, and restrictions pertaining to eating, exercising and other physically strenuous activities. They also learn lifestyle management, go on fun outings, provide positive support as mentors to their peers and do speaking engagements for community groups or at events, Miyata said.
If you’re a teenager with a bad heart, it can be hard to talk about the scar running from your neck down to your stomach or the valve in your chest. It can be difficult to explain the challenges of living with a heart condition that has necessitated multiple surgeries. You may feel embarrassed or self-conscious, Miyata said.
“This group gives kids a place were they don’t feel so alone and can feel normal. They have a bond that you cannot explain,” she said. “Through their own club, the teens have their own officers, feel like they can talk to people who understand what they are talking about and a chance to make in impact in their community. Their self-esteem, confidence, leadership and organizational skills have grown. At The Heart Walk in Hilo, there was complete silence as our teens moved people to tears by bravely sharing their stories and how far they’ve come.”
Kelsey Lactaoen, a 18-year-old Honokaa High School senior, faces the usual problems associated with being a teen, but she also has something few others her age must deal with: tetralogy of fallot, a defect that changes the normal flow of blood through her heart.
Lactaoen underwent surgery at 16 months old. She said her condition prevents her participation in sports — her only limit. Lactaoen listed various clubs, activities and classes she involved in, including serving as Hawaii Island Kardiac Kids’ teen club president. She said she’s proof children with congenital heart defects can live active, fulfilling lives.
“Kardiac Kids helps kids discover their talents and not lose hope,” she said. “Never limit yourself.”
Support is also offered to younger children and siblings. Hawaii Island Kardiac Kids seeks to orchestrate the smooth transfer of each adolescent’s journey to adult cardiac services. The process begins with the child obtaining a solid understanding of the cardiac condition, implications for adult life and what each individual can do to achieve best clinical, educational and social outcomes. Steps toward the mastery of self-advocacy skills and ability to navigate the legal issues, medical coverage, educational and vocational implications are crucial, Miyata said.
“Historically, most children born with congenital heart conditions would never see adulthood. Recent medical advances have reversed this and today adults with congenital heart conditions outnumber children with the same condition,” she said. “The Hawaii Island health provider shortage in the highest in the state. Children and teens with cardiac conditions are an especially vulnerable population. Hawaii Island Kardiac Kids recognize the critical relationship between empowering children and teens to take responsibility for their health.”
Hawaii Island Kardiac Kids has approximately 25 members, 15 of whom are from West Hawaii. It is going through “a revival” and looking to recruit more members. The group also wants to partner with a nonprofit organization to help it accomplish its goals and allow it to receive donations to send members to trainings, clinics and camps, Miyata said.
Kapiolani Medical Center in Honolulu brings leading pediatric heart specialists from the mainland several times a year, including this week. Hawaii Island Kardiac Kids wants to help lessen the expense for Big Island families to travel there to get these critical procedures, she said.
Dedicated parents currently run Hawaii Island Kardiac Kids with their own resources and the meeting place changes monthly, Miyata said.
Hawaii Island Kardiac Kids invites families dealing with congenital heart defects to its Family Fun Day at Konawaena High School’s farm. From 11 a.m. to 2 p.m. Saturday, attendees will tour the more than 3-acre farm, as well as get lunch, gift bags and prizes. Reservations are required and must be done by 4 p.m. Friday.
Call Miyata at 322-4882 to learn more about the group.
