The Adult Congenital Heart Association—Helping Adults with Congenital Heart Disease Thrive, Not Just Survive
“She’ll never live.” These were the first words a new mother heard from the attending nurse when her child was born. The baby was blue, weighed less than four pounds, and had some type of serious heart “problem.” That child was me.
As a child, I never really understood exactly what condition I had or its severity. My pediatrician only noted that I had a heart murmur. In hindsight, I can appreciate that in the late 1950s, medical science and diagnostic tools weren't where they are today, making an accurate and complete diagnosis difficult. I only knew that I got tired easily during gym class, couldn’t run as fast as everyone else, and had trouble keeping off weight.
Not knowing the severity of my condition and any limitations it posed, I was determined from an early age to attend the Naval Academy. My dad was a U.S. Naval Academy graduate and was killed serving his country when I was six months old. It was my long-standing goal to honor his memory by attending the Academy and becoming a career officer. Finally, it seemed that my wish would become reality--I was thrilled when I was in the first group of women selected to attend the Academy, pending medical clearance.
It was when I had to undergo the pre-admission comprehensive medical exam that my complete congenital heart issues were made clear. I had Ebstein’s Anomaly, a rare congenital defect. I was denied admittance to the Academy because my heart posed too much of a risk. I was devastated.
This was the first time I had experienced any major limitations or discrimination based on my heart disease. I was angry, and vowed I would do my best to stay as fit and healthy as possible.
I always felt somewhat alone with my disease, having a condition that many doctors didn't even know about. I would go for checkups and more often than not interns would come in to listen to my heart. Then, one day while at work, I was discussing weekend plans with a colleague. I mentioned that I was going to Boston for my annual cardiologist visit. She inquired why I was traveling so far (I worked in New Jersey at the time) and I informed her that I had a rather rare condition called Ebstein's Anomaly. She broke down in tears, and I couldn't understand why. Through her tears, my colleague told me that her baby daughter was just diagnosed with the same condition. She had been told that most children born with Ebstein's do not make it to adulthood. She said knowing that I have this condition gave her hope. Seeing her pain turn to joy planted in me the desire to one day work with women and children with heart disease.
Somehow, somewhere, I found the Adult Congenital Heart Association’s website, www.achaheart.org. In reading through its mission, I immediately felt a connection and knew that I wanted to volunteer with this wonderful organization.
The mission of the Adult Congenital Heart Association (ACHA) is to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research. The ACHA website, print materials, media outreach, educational events and advocacy events allow ACHA to reach out to adults with CHD and advocate for the ACHD community. ACHA offers information directly to patients and families, and provides materials and services through health-professional members. ACHA was founded in 1998 by a group of adult congenital heart defect survivors and their families as a national 501(c)(3) not-for-profit organization.
ACHA is dedicated to promoting excellence in ACHD care. Thanks to medical improvements, the number of adults living with congenital heart disease is now greater than the number of children. It is critical for these adults to receive life-long care with a cardiologist specializing in adult congenital heart disease. Advocating for the availability of such care is a main goal of ACHA.
It has been an honor and privilege to volunteer with this wonderful organization. Through the ACHA Heart-to-Heart Ambassador program, I am able to provide one-on-one peer support and encouragement to those living with congenital heart disease. The Ambassador program not only provides one-time matches but 3 month matches, enabling Ambassadors to help those with longer term concerns, such as preparing for surgery.
One of my most memorable experiences with ACHA was volunteering at the Congenital Heart Walk in Boston, Massachusetts. In spite of the nasty rainy weather, hundreds came out to walk a mile in support of or in memory of those with CHD. Along with raising funds for congenital heart research, these walks provide a communal opportunity for congenital heart “families” to support and encourage each other.
The ACHA has been there for me as well. I had my first open heart surgery—at age 57--6 months ago. The support, encouragement, and advice from fellow ACHAers was a true blessing. With ACHA, I no longer feel alone. With ACHA, I intend to provide support for other adults living with congenital heart disease for a long time, helping them thrive, not just survive.
Review from #MyGivingStory
My daughter was born in 1983 with serious complex heart defects. Today she is 29 years old. This site has helped with transition from pediatric to adult doctors. We have used the directory to find good ACHD doctors.
I'm the mom to a 13 year old girl who has a heart defect. I pray everyday that she will grow into an adult with a CHD. I like to read the blogs & watch the webinars to gain insight on what the future holds for her.
ACHA has changed my life. When I found out about the need for a second surgery in my late 20s, I was overwhelmed and felt very alone. I knew little about my condition, and had never met another person who understood on a personal level. My cardiologist introduced me to ACHA and the change has been dramatic. From raising awareness, to education to simply connecting those who understand, ACHA makes a difference. I'm so happy to have found the blogs, the fundraisers which bring us all together and the wealth of knowledge on their site.