Home is where the heart is for congenital defect children

By Piriya Mahendra

The American Heart Association (AHA) recommends that children with a congenital heart defect deemed as being at high risk for developmental disorders are treated under a "medical home" model of care.

Children born with a congenital heart defect are at a greater risk for neurodevelopmental issues such as poor social skills, speech and language problems, attention deficits, behavioral and emotional issues, as well as physical limitations, compared with those without the condition.

Children who are at high risk for developmental disorders include neonates or infants requiring open heart surgery, those with other cyanotic heart lesions not requiring open heart surgery in the neonatal or infant period, and those with a combination of congenital heart disease and other comorbidities, according to a new AHA scientific statement.

"If your child fits the high-risk criteria, go to the physician who coordinated your child's care to obtain evaluations for neurodevelopmental, psychosocial, and behavioral and emotional issues," advised Bradley Marino (University of Cincinnati, Ohio, USA), co-chair of the statement's writing group, in a press statement.

"Your child's cardiologist should continue to handle the physical issues related to your child's heart disease, but other caregivers need to join your child's 'medical home' to ensure the best ongoing, comprehensive care," he added.

A medical home, he explained in the press statement, is usually the child's primary care provider, who should coordinate care between various specialists. The writing group recommends that the medical home model of care may be effective and beneficial in the management of congenital heart disease patients.

According to the medical home care model, each time a patient visits their medical home, their risk for developmental disorders should be reassessed and categorized into low- and high-risk.

If a child is considered to be at high risk, referral to early intervention services or childhood special education services before confirmation of a specific developmental diagnosis is warranted, the authors say.

Periodic re-evaluation for developmental disorders and delays at 12-24 months, 3-5 years, and 11-12 years of age is also recommended.

Moreover, the authors say that high-risk patients may benefit from higher education or vocational counseling as young adults.

"If we identify developmental problems earlier, we're going to help prevent issues from coming up in school that prevent these children from achieving their fullest potential," explained Marino.

"In the past, we were happy if they survived. Now, we want them to survive and thrive."

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