The Nicklaus Children's Heart Program Alumni Association, a new initiative at Nicklaus Children's Hospital, formerly Miami Children's Hospital, held its first Patient and Family Education Day for families of children with congenital heart defects (CHD) on November 15. The weekend event was focused on providing parents with information on what to expect during their child’s school years, including participation in team sports, physical education as well as social, learning and attention challenges.

“We have learned so much from the many children with complex heart conditions who have grown to adulthood, thanks to the medical interventions in the past two decades,” said Dr. Gil Wernovsky, Medical Director of Patient- and-Family-Centered Care for Nicklaus Children's Hospital's Heart Program. “We have been able to identify many of the challenges that emerge over time for some of the children, and we are developing follow up practices and educational initiatives to help families identify any emerging issues related to movement, endurance and learning at the earliest and most treatable stages.”

Thanks to advances in heart surgery in infancy, children born with congenital heart defects are now living long lives. The population of people living with complex CHD continues to grow, and with that raises new challenges and questions about what patients with CHD can and cannot do in their daily lives.

Flavia Schimel, a pediatric nurse in the cardiac intensive care unit, recognized there was a growing need for a forum for families. “We have learned that as the patients grow up the parents have a lot of questions, some of which we may not have the answers to just yet. The Patient and Family Education Day was a way to get all of these experts from different specialties in one place to have an open discussion with parents.”

Nicklaus Children's Hospital presenters included Dr. Gil Wernovsky, Dr. Ann Hyslop, pediatric neurologist, Dr. David Drossner, pediatric cardiologist and Cathryn Sellers, MA Ed. The parents and clinicians discussed everything from team sports, differences in learning styles, ADHD treatment and even whether children with CHD should ride rollercoasters.

Adriana Alonso shared her concerns about sending her 16-month old son to preschool soon. “It is very reassuring to hear from others, not just his cardiologist, that he will be able to lead a normal life.  It helps to know that there are others that share the same questions and concerns.”

 
The Alumni association is committed to providing support, education and advocacy to the families with congenital heart disease.  Future Patient and Family Education Day events will soon be announced. For more information, please visit The Nicklaus Children's Hospital Heart Program’s web page by visiting www.mch.com/theheartprogram or visit The Alumni Association Facebook page at: https://www.facebook.com/MCHPAA