Every person born with congenital heart disease deserves to live for a lifetime, not just a childhood – so it is crucial for the medical community to plan for the future of all congenital heart patients.
This was the impassioned message put forward by Amy Verstappen, president and CEO of the Adult Congenital Heart Association (ACHA).
Verstappen (51), who herself has a complex congenital heart disease, used the Plenary on A Lifetime with Congenital Heart Disease, to call on paediatric cardiologists and specialists in adult congenital heart disease to work together to take account of and plan for the futures of people with congenital heart disease.
Born in 1961, Verstappen was one of the earliest group of patients who were treated for congenital heart disease.
“I am very lucky to have lived as long as I have,” she said. “What we have found out is that children who have had operations for heart defects usually do very well as children, but as people age, their chances of developing new, life threatening problems, increase dramatically.”
Verstappen started her organisation in 1998, the same year that she was fitted with a pacemaker. She and her team aim to assist the millions of congenital heart patients in the United States.
In an upbeat address, she described how she has managed to live a life which includes swimming, yoga, a two mile walk every day and a full time job with lots of travel. She said she firmly intends to dance at not only her daughter’s wedding, but also at the wedding of her grand-daughter.
Verstappen stressed that congenital heart disease is a lifelong chronic disease.
“It is not a childhood condition and there is no cure for congenital heart disease.
“The goal for every person born with congenital heart disease should be to live to age 80 and not to age 18. We all need to work together to achieve that future for everybody so each of us can thrive throughout the lifespan.”
According to Verstappen, when paediatric cardiologists first started treating children with congenital heart disease, this was seen as a simple problem.
“If the child was blue, you did an operation and they turned pink – and they figured the problem was solved. It was all seen as very straight-forward.
“But as these children aged it turned out that they are at very high risk for developing new problems and this is for two reasons: Firstly they still don’t have a normal heart and as their hearts age, they have all sorts of risks that are inborn in that anatomy.
“Secondly, the surgeries themselves cause problems. These are new technologies and we had no idea how people were going to age with them.”