Twenty-five years ago, most newborns with complex heart defects did not survive.
Medical advances have led to miraculous results for this group of patients. Today, most survive because of new medications and open-heart surgeries, the introduction of ultrasound and improved capabilities of intensive care units.
“As we got better and better at taking care of these kids, we began to realize that some of them were having developmental problems,” says J. William Gaynor, MD, holder of the Daniel M. Tabas Endowed Chair in Pediatric Cardiothoracic Surgery.
As evidence of patients’ developmental issues mounted, the Neurocardiac Research Group formed in 1998, bringing together researchers from cardiology, cardiothoracic surgery, cardiac anesthesia, intensive care, cardiac nursing, neurology, genetics, biostatistics and developmental pediatrics. “We brought together people from multiple disciplines because that’s the best way to address a complicated problem,” says Gaynor, the group’s director.
Today, evidence shows that nearly half of children with complex congenital heart defects experience neurodevelopmental problems, such as impaired fine motor skills and learning difficulties; as many as 30 percent have attention deficit hyperactivity disorder (ADHD). The Neurocardiac Research Group is examining why these problems occur, what are the best therapies for current survivors of heart surgery, and what can be done for prevention in the future.
A gift of $400,000 from the Fannie E. Rippel Foundation helped the group to start up, and it has also been supported by funds from the Fourjay Foundation, the Daniel M. Tabas Chair and the Alice Langdon Warner Endowed Chair in Pediatric Cardiothoracic Surgery. With this philanthropic support, the group has become an international leader in this area of research.
“When two kids have the same heart defect and the same operation, and one has problems and the other doesn’t, the question is why,” Gaynor says. “We plan on finding these answers so we can begin to individualize treatments.”
Congenital heart defects may not occur in isolation and may have secondary effects on other aspects of fetal growth, including brain development. blood flow to the brain is lower than normal in many infants with complex heart defects, before surgery. previously unrecognized genetic syndromes may be present in up to one-fourth of children with the most complex congenital heart defects.
The studies will help lead to treatments to reduce neurodevelopmental issues in the next generation of children with congenital heart defects. The Neurocardiac Research Group would also like to establish a comprehensive follow-up clinic to track development for years after surgery. Philanthropic donations would greatly help in the establishment of this important new dimension of care.
Heart patients would visit at periodic intervals as they grow into young adults and be assessed by physicians from various disciplines. The clinic would allow researchers to collect data, over years, on important factors affecting quality of life, such as school performance, clumsiness and attention and behavior issues. At the same time, it would benefit families and patients, who would see the same staff, including physicians, nurse specialists, physical and occupational therapists and speech pathologists. That continuity of care would mean families and patients could ask questions and seek advice over time.
“Nothing makes a doctor happier than to see a patient who was very sick as a baby grow into a happy, healthy child,” says Gil Wernovsky, MD, a Cardiac Center Cardiologist who has helped lead the neurocardiac research effort. “When our patients experience problems, such as having difficulty in school, then those are our problems, too. A multidisciplinary follow-up clinic would allow us to better support our patients, and their families, over the long haul. And it would further our research into the very serious neurodevelopmental issues some of our patients are facing.”
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