Kayleigh's Story
Dear Oprah:
I have thought long and hard about what to say in my letter to you. How do I get across the importance of what we are trying to do? How do I convince you to champion our cause and help us raise awareness and with awareness, money for research? After weeks of thought and deliberation, I've come to the realization that the only thing I can do is to pour out my heart to you and hope that you hear not only my cry, but also the cry of all the other parents that cry with me.
My beautiful daughter, Kayleigh McKenna Dubois, was born on the 1st of April 2007 with a Congenital Heart Defect (CHD) called Hypoplastic Right Heart. One of every one hundred babies born is born with a CHD. Kayleigh was that one. She was not unlike many before her. She was given a 10% chance of survival. Parents of CHD children do not start their struggles when their children are born; they start them as soon as their children are diagnosed, usually around 20 weeks of pregnancy. "How come I've never heard of this? Where can I find information? What research is being accomplished to help my child live?" These are only a couple of the questions that all of us face when given this diagnosis.
Fortunately, I was a lucky one. My daughter was born and after intense medical care, she and her twin brother came home after only three weeks. We are lucky ones in that scenario; many don't go home for months, and worse yet, many don't go home at all.
Kayleigh is a beautiful child; full of love, hugs and kisses for her family. She has such a fun personality and an infectious smile and laugh. She is such a strong child, to have gone through what she has and still be a beautiful, fun-loving little girl. I could not imagine life without her and thank God everyday for the miracles that keep her alive.
My daughter had her first heart surgery at four months of age. How can I possibly describe going through that experience with your beautiful baby who is just learning to interact with you and their environment? She was laughing and babbling and for the first time starting to display the true personality she would have. We didn't see that again until four months after the surgery. These events are so hard on these children. It is the hardest thing any parent will have to go through; seeing their children go through this kind of pain and not be able to do anything to relieve it. Repeatedly I would have to physically hold her down while they tried to put in an IV in veins so small, I couldn't even see them. Over and over again, my beautiful baby girl was forced to endure such painful procedures and I could do nothing but hold her still until the doctors or nurses were done. I do not know of a parent who would not have taken this upon themselves in a heartbeat to relieve their child of the burden. If only it was that easy.
Kayleigh had her second surgery when she was 22 months old. She was learning to talk and so she could express herself to me. "All done Mommy! All done!" she would cry when they came to do another IV or blood draw or X-ray or ultra sound. She would look at me as if to ask, what did I do wrong, why am I being punished? These images are forever burned in my brain and my heart is still broken from her cries. All I could do is hold her, dry her tears and mine, and know that everything that was being done was for her best interest. And it was; 10 days later we were home with another scar, and a surgically repaired heart. She has been running around non-stop since then. She is a miracle. She is my angel from God.
How is it possible that people do not know that CHD is the number one birth defect? How can so many children be born with CHDs and yet the WORLD is not standing up and taking notice? Not a day goes by that I don't hear an ad on the radio or see a commercial on TV talking about how many children are born each year with Autism; 1 in 150 children. How many are born with a CHD? 1 in every 100 children born! CHD is the leading cause of infant death in the US and in every country around the world. And yet hardly any money is going to research the causes of CHDs or prevention. There is nothing I wouldn't do to give my daughter the best chance at life. But to do that, awareness has to be raised and money needs to go to research. Oprah, we need you to champion our cause. We need you to bring CHD's startling statistics to light. Help raise awareness of how prevalent CHDs are and how little is being done currently to combat this epidemic. Muscular Dystrophy has Jerry Lewis; Parkinson's disease has Michael J. Fox, spinal cord injuries had Christopher Reeve until his passing, Autism has everybody, Cancer has everybody…etc. We are in desperate need of someone of influence to announce to the world that CHD is the number one birth defect. We need you Oprah. You are the answer to our prayers. Please, please, please help. Help my beautiful daughter, and the thousands like her, live a long, fulfilling life.
Sincerely,
Suzanne K. Dubois