I am Danielle… I happen to have a heart defect.
On December 1st 1985, I was born as a classic ‘blue baby’ diagnosed shortly after birth with Ebstein’s Anomaly, a defect of the tricuspid valve. Throughout my childhood, I was much slower than my peers, becoming cyanotic ‘blue’ and short of breath easily. I had never met anyone else with a heart condition as a child and thought I was meant to be different. Like so many other patients, different was my normal. Although my physical ability was limited, it did not stop me from experiencing life. I credit this to my parents who although over protective, they also knew if I had my mind set on something I was hard to reason with. So even though I was always picked last or the worst player of whatever game or sport I was interested in, I still participated, if only to be able to hang out with my friends. Until I was an adult did I have an appreciation of how significant my heart condition was and how it has and always will impact every aspect of my life. After being fairly ‘normal’ throughout my childhood and teens, I became symptomatic when I was a senior in high school. I had my first surgery when I was four and did not remember any details. Throughout my life I had been hospitalized several times, undergone a number of caths and other minor procedures, but I thought this would be all I had to deal with. When I was 18 I found out that my tricuspid valve was failing and the medication I had taken for ten years was not helping me anymore. It was advised that I have another valve replacement. At this point I was in the middle of classes at art school and had to quit, indefinitely. During the initial surgery I went into complete heart block and had to have a pacemaker placed to keep my heart beating. This time in my life was extremely psychologically difficult. Out of sheer boredom, and to ease the psychological burden, I returned to work two weeks after I was discharged from surgery. Shortly after returning to work I met my now husband. Prior to my surgery I was informed I would have a bio prosthetic valve originating from a cow. The use of animals in research fascinated me and I wanted to be able to give back to the animal(s) who not only gave me a second chance at life but who service us as research, working and companion animals. With a push from my then boyfriend (now husband) I redirected my education from photography to veterinary technology. Fast forward several years, I am now 30, accomplished my intention to work with research animals at Cincinnati Children’s Hospital. I am able to care for aquatic animals, who help researchers discover the genetic aspect of Congenital Heart Disease. I am so thankful that I have been able to come full circle and I am able to participate, in some small way, in giving back to the research animals and other patients. Between the ages of 18 and 30 I had 2 more valve replacements and a new pacemaker. During this time I have found something that has truly helped me through any hard time, my voice. As a very shy, meek child my grandmother asked me recently, “Where did you learn how to speak up?” I credit this to the wonderful heart families I have met who were the first to encourage me and validate that my story mattered. The past seven years I have participated in several congenital heart disease related non profit organizations that have given me the courage to share my story. I have met other patients and families who have not only become close friends but inspire and push me to continue advocating for Congenital Heart Disease. Through meeting these beautiful families I realize how fortunate I am. Many congenital heart patients lost their battle far too early. I keep a picture of a heart angel, Emily, in my locker at work to remind me on the hardest days, why I come to work and I have no excuse to give up. Through my work with several different organizations, I have found a special interest in Adult Congenital Heart Disease (ACHD) advocacy. Due to advancements in medicine, treatments and surgical innovations made possible by research, ACHD has a continuously growing number of patients. There are more adults living with congenital heart disease than children. Living with congenital heart disease impacts several aspects of an adults life. Although the majority of congenital heart disease related organization’s goals is to raise money to support research which will extend patients’ lives, once a patient reaches adulthood there is very little support for them compared to pediatric patients. ACHD patients become lost to care, because they believe or were told they were ‘fixed’ as a child. This misconception can be extremely detrimental by dissuading patients to stay in contact with a ACHD specialist. I work closely with Cincinnati Children’s Hospital ACHD specialists to provide education, peer support, medical referrals/resources, social events and community outreach opportunities. One of the most crucial types of support is peer based. Speaking with another patient who has gone through the same struggles and triumphs as you is something that cannot be clinically duplicated. Knowing you are not alone is a truly sustaining comfort. Peer based support can also encourage patients to seek appropriate medical care by facilitating patient to patient referrals. With the help of some awe inspiring ACHD patients we have formed a peer based support and educational program, Adult CHD Survivors of Cincinnati. Our group hosts educational meetings with medical professionals, provides opportunities to socialize, encourages participation in fundraisers and community events. More recently we are thankful to partner with the Children Heart Association of Cincinnati to be able to support more patients and families. This summer marked the first Adult Congenital Heart Disease Patient Camp. Thanks to the Children’s Heart Association of Cincinnati, in partnership with the Cincinnati Children’s Adolescent and Adult Congenital Heart Disease Clinic, we were able to provide 24 adult patients a day of adventure, education and the opportunity to meet and socialize with other patients. If asked if I wish I was born without congenital heart disease I would say no. My heart condition has given me first hand knowledge and the opportunity to serve others. The amazing, courageous and kind people I have met through my journey and the opportunities I have had completely outweigh the struggles and uncertainty I have living with congenital heart disease. Everyday I wake up, I am thankful; each new day brings an opportunity to make a difference, to support and love others. I try not to live through my heart condition, to remember I am not a congenital heart disease patient named Danielle.
I am Danielle… Someone who happens to have a heart defect. But since my heart condition and I are in it together, I might as well make the most of it.