Born with Congenitally Corrected Transposition of the Great Arteries, Amy Verstappen had a normal childhood. Although she had “a bizarre heart murmur and a weird EKG,” her life was on track until she decided to have a child of her own. “In my sixth month (of pregnancy) I had lots of shortness of breath, edema, and my Nurse-Midwife says to me `You’re looking funny and we’re worried; we think you need to go back to your cardiologist.’” The cardiologist dismissed their concerns. “`They’re just Nurse-Midwives, what do they know about the heart?’”
Amy successfully gave birth to her daughter, Lena, and was contemplating pregnancy again two years later. “Before my pregnancy I had very pristine heart function. Two years after my pregnancy, I was planning another child but I was very tired. I had been tired a long time but I had a little baby.”
Stunned to learn that her heart function had “really gone south,” Amy was also shocked to be told that she needed a heart transplant. When she asked questions about her condition, the answer was “Mrs. Verstappen, you are in denial.”
After searching for answers, Amy found a clinic where the doctors were familiar with Adult Congenital Heart Defects and were capable of giving her a correct diagnosis. The news was good: She did not need a transplant, nor was her heart enlarged. Her reversed Ventricles merely created that illusion. But one of her valves was wearing out, and she would need to have it replaced. “Instead of a transplant I had a valve repair,” Amy says. “Luckily my heart function really snapped back, and I have pretty much normal exercise function.”
Afterward, one of her doctors not so gently told Amy that was time for her to make a difference: “After I had my surgery, (Mayo Clinic Cardiologist) Dr. Carole Warnes looked at me and said `You are incredibly lucky. Very few people with your anatomy actually get to have surgery and you have a moral obligation to speak out on behalf of them.’”
Amy’s recent close call – and that moral obligation – led her to a fledgling organization known as the Adult Congenital Heart Association (ACHA). Joining the Board of Directors in 2000, Amy stepped off the Board in 2005 to become the Association’s first full time paid President.
In the past year, The Adult Congenital Heart Association has begun to transition from only dealing with adult issues to actively working for both adults and children with heart defects. The ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition.
“I’m very excited about the new legislation that we are drafting,” Amy says. Her face becomes more animated as she speaks, her passion for better Congenital Heart care reflected in every word. “We’re actively writing a bill that we hope to have turned into law. The working title right now is the Congenital Heart Futures Act. It will say – very strongly – that Congenital Heart Disease is a lifelong disease, and this country needs to make a commitment to treating people over their lifetime, not just in childhood.” ACHA has a list of twenty or more potential sponsors of the bill.
“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says as she looks toward the future. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together… that’s the long term goal and I am very positive we’ll get there.”
“You’ll see the ACHA working more and more with the Pediatric community. Remember that ACHA doesn’t just involve patients and families but also health care professionals. We’re really working to get the Pediatric Cardiologists together more with the Adult Congenital Heart Defect (ACHD) doctors and clinics because we still have a huge problem in this country in that we’re not getting good transitional care.”
“We designed a new brochure for parents, very specifically talking about what kind of care their children would need,” Amy recalls. “And when I presented a pilot version of this brochure to a group of Heart Moms – all leaders of some of the advocacy groups for children – three of them told me that no one had ever told them that their child was going to need this level of care. So what I would say to Heart Moms is that your kids can do great, they can thrive, you can have a high quality, excellent, full life…but the second thing I would say is parents should talk very specifically with their Pediatric Cardiologist and ask them hard questions. How often do you expect my child to see a Cardiologist? What kind of doctors do you think they might need? We don’t know all the answers right now but there are guidelines, like the Bethesda 32 report. The bottom line is anybody who has anything complicated, has to go at least every two years and be seen at a highly specialized Congenital Heart Center. And that includes those children with a complete repair.”
Amy turns quiet as she recalls an all too familiar event: “One of the saddest things about my job is to find someone who says to me, `By the time I got back to good heart care it was too late (for me).”
Tags: ACHA, Adult Congenital Heart Assocaition, Amy Verstappen, Carole Warnes, CC-TGA, CHD, Congenital Heart Defect, Congenitally Corrected Transposition of the Great Arter, Heart Defect, Mayo Clinic, National Congenital Heart Coalition