Erin
My name is Nancy Kelley and I am the mother of a 15 1/2 year old daughter, Erin Ann Kelley, who was born with 5 heart defects. We live in Nashua, NH. Erin has bravely fought congenital heart disease for her whole life. She has been my shining star. She was diagnosed at the age of 8 days and it was one of the worst days of our lives. We did not have any concept or knowledge of CHDs but we were quickly thrust into the "Heart World". She developed congestive heart failure at 3 weeks of age and was put on two medications to manage her symptoms. As she got older she got stronger and we were able to discontinue her meds at the age of one.
Erin had her first open heart surgery at the age of 8 and her second at the age of 10. She bounced back quickly from her surgeries and was amazingly strong and brave. Unfortunately during her 2nd surgery she suffered an injury to one of the nerves in her heart, leaving her with a conduction disturbance . Although she is stable for now, the possibility of the need for a pacemaker and further surgery is in her future. She also has a residual defect (uncorrected) after her 2nd surgery which means that she will have to be followed regularly by her pediatric cardiologist for the rest of her life. It is difficult for a teenager to live with a chronic life threatening disease, but Erin does not let it slow her down. Right now she has no physical restrictions, although she does have an AED (automatic external defribrillator) which she must be present when she is in gym class and at all of her sporting events. Erin plays field hockey and lacrosse for her high school and is one of the best players on both teams! She must rest often during games and practices, but otherwise she plays just as hard as any other member of her team.
Erin is a heart warrior and hero. She is one of the "success stories" of CHD. She is one of the "lucky" ones. We thank God each and every day that her defects were so amenable to repair. We are so proud of her and all she has accomplished in her life so far.
Each summer Erin attends Camp Taylor, a free camp in California for children and teens with heart disease. It is the one place where scars don't matter because everyone has them. The kids do most of the things "normal" kids do: swim, have water fights, go horseback riding, climb rock walls and brave the high ropes course (unless they have cardiac restrictions), and just act like kids. I am a volunteer counselor at Camp Taylor and as such, have experienced some of the most incredible moments of my life. I have met kids who have undergone multiple surgeries and procedures and they have amazed me by their strength and courage. They are all heros and warriors in this war against CHDs. Next summer Erin hopes to be able to also attend Camp Taylor's Hawaii Family Camp to be a mentor to younger children with heart defects.
It amazes me that so few people know about heart defects and the uncredible toll they take on children and their families. So many people, when told of Erin's defects, said to us "yeah, but they can fix that right?" As if open heart surgery was as minor as removing a splinter. They do not understand the incredible fear of leaving your child in the operating room, in the hands of surgeons, anesthetists, and technitions who are going to stop your child's heart, cut it open, and (hopefully) start it again. But, to be fair, how could they know? They will never enter an OR and see a bypass machine being primed for their child's surgery. They will never wait for hours while their child undergoes some of the most risky surgery in the world. They will never see their child in ICU attached to tubes, wires, and monitors; listening to the machines as they "alarm" again and again, striking fear into a parents heart. They are lucky in their ignorance.
It has become my mission in life to educate people about the incidence of congenital heart disease, the affect it has on families and children, and the need for more funding for research and early detection. So many people consider heart disease to be a disease of the elderly and infirm, never knowing that 40,000 babies are born each year with this devastating condition. We must fight to educate all those who are in the dark and do not know of the existence of CHDs, or our children (and future children) will forever be fighting for their lives. Young hearts should not be so challenged by disease. Young children, teens, and their families should not have to live with the incredibly difficult future of living with heart disease. We must take a stand against CHDs. It is the only hope our children have of winning this fight.
Nancy Kelley