As an infant, Miguel Munoz was diagnosed with Shone’s complex, a rare congenital heart condition consisting of multiple left heart valve defects. With close monitoring and treatment, Miguel managed to live a relatively normal childhood until his 12th birthday. Around that time, his mother, Ircar, began to notice something wasn’t quite right.
Ircar found that her son wasn’t following directions and she often had to repeat things. When she asked if Miguel’s auditory processing disorder was a result of Shone’s complex or associated medication, Miguel’s pediatric cardiologist, Amanda Cook, MD, suggested she visit the cardiac neurodevelopment program at Atrium Health Levine Children’s.
The program is designed to address cardiac patients’ cognitive, behavioral, and social concerns. Patients and families at the clinic have access to neuropsychologists, education specialists, mental health professionals, dietitians, and other innovative therapies – from birth to adulthood. As a result, the hospital and families can proactively meet challenges that young patients might face.
Five months after being referred, Ircar is singing the program’s praises.
“This is the kind of help that every family needs, especially when you have a kid with a heart condition,” Ircar says. “Sometimes parents forget there are more things (besides the heart) that need to be supported, like school, like development, or like nutrition or speech or physical therapies. It is very important to support our kids, and this team is the best answer for those kinds of things.”
A comprehensive approach to care
Approximately 40,000 children are born in North America each year with congenital heart disease (CHD). Approximately one-third are born with complex CHD requiring surgical intervention during their first year of life. For these children, neurodevelopmental disabilities are common, affecting approximately half of survivors as they mature.
In 2017, former Carolina Panthers tight end Greg Olsen realized that his now 7-year-old son T.J. needed additional support from side-effects of his complex congenital heart defect that he battled since he was born. Olsen and his wife, Kara, helped ensure that other families and children with heart conditions receive extra care through a $2.5 million gift to establish the HEARTest Yard Pediatric Cardiac Care Center at Levine Children’s, under the partnership of Atrium Health Levine Children’s, Atrium Health’s Sanger Heart & Vascular Institute and Greg Olsen’s heart care initiative, the HEARTest Yard. The Center will soon house the region’s only cardiac neurodevelopment program, which was first launched at Levine Children’s Hospital in 2017 thanks to a previous $750,000 commitment by the Olsen family.
To date, the Olsens have raised over $5 million for programs and initiatives that provide comprehensive care for Levine Children’s patients with congenital heart disease.
“The needs of the pediatric cardiac population – both for congenital heart disease and transplant patients – have always been there,” says program director Nancy Dobrolet, MD. With the new program and the Olsens’ generous donations, the pediatric cardiology team can provide more collaborative, specialized care to these patients.
Levine Children’s pediatric cardiology team has long delivered some of the nation’s best care. But now they’re joined by other dedicated medical professionals who can assist with psychosocial and anxiety issues, provide physical and occupational therapy, school support and academic readiness, and more. Now, a pediatric neuropsychologist recently joined the team.
“She rounds out the program further,” says Dr. Dobrolet, “She’s able to provide both psychological support for the families and children and patients, as well as formal neuropsychological testing, which will be really key for families.”
And that’s not all -- there’s even a dietitian to provide nutrition education and make recommendations about food and snacks for the patients to help keep their heart healthy. For 12-year-old Miguel, he has learned about having a well-balanced diet that is catered to his heart condition.
Family members need support, too
Kari Crawford, MS, APRN, CPNP, is the cardiac neurodevelopment program’s dedicated nurse practitioner. She said patients spend most of their visit with the team’s other specialists before seeing her or Dr. Dobrolet for final treatment recommendations and, if necessary, referrals to additional specialty care.
The care and treatment that patients receive can be lifesaving. It also can be life-altering for patients’ loved ones, a fact that Crawford stresses.
“I often tell my families, when the child is born with a heart defect, it doesn’t just affect the child, but the entire family,” she says.
Sometimes parents get stressed before bringing a child back to a cardiology visit if they have not been seen for a while. Sometimes siblings have difficulty adjusting when parents must devote their attention to hospital visits for long stents of time, and are focused on their child’s illness and meeting their care needs.
“We want to try to help them navigate all aspects of daily living,” Crawford says, “and if we need to refer them for counseling, then we want to help them as well.”
“[Counseling] has been an area that has not been served at all,” Dr. Dobrolet says. “The stress that being born with a congenital heart defect or having a heart transplant imposes on a family, every member of the family.”
Any infant, child or adolescent who has had cardiac surgery is a candidate for the program. Even patients who are doing well as they grow and develop can be assessed for reassurance or a checklist of things to watch for. It doesn’t matter where the pediatric surgery occurred – at Levine Children’s or another hospital – or at what age or stage of the heart condition.
“We know as a community of pediatric cardiologists that the neurodevelopmental needs will change and evolve as the child ages,” Dr. Dobrolet says. “So, we’re not just evaluating infants or school-age children, but also young adults struggling with executive functioning skills and self-care, as well as adults in the community not realizing they may have some challenges that nobody’s been able to pinpoint.”
And thanks in part to the Olsens’ generous donation, she has an entire, multidisciplinary team to assist in that effort.
