COOPER’S STORY

I will be four years young, next month. I share my birthday with my twin sister Chloe and we have a two year old brother, Carter. I go to preschool with my sister. I love cars, throwing baseballs, playing basketball, soccer and swinging a golf club.  Living in Florida near the beach, I enjoy building giant sandcastles. Thanks to the Melody® valve, I can now do all these fun activities and just be a kid.

What’s your Medical story? How does the Melody® valve fit in?

I have Shone’s complex and have undergone 4 heart surgeries. The first was to fix my extremely narrowed aorta. The second and third were to repair a very poor functioning mitral valve. The results of the mitral valve repair surgeries were short lived. I would feel good for a few months and then I would have a hard time breathing, be very tired and not want to eat. The doctors would use big words and tell my parents, it was because my mitral valve was too open or too closed.  This would make the pressures in my lungs increase. The only option I had left was to have my mitral valve replaced.  In February of 2013, I got to fly on the big airplane and go to NYC. Dr Bacha, my heart surgeon at Columbia Presbyterian Hospital, performs numerous heart surgeries on little kids like me.  Dr. Bacha’s team, with the help of Boston Children’s hospital, replaced my mitral valve with a Melody® valve. I am the first kid in New York to have the Melody® valve placed in the mitral position, at Columbia Presbyterian. I am lucky, though mommy and daddy say I’m really blessed!

How do you think your life is different because of the Melody® valve?

For for the first time in my life I have been able to run with my sister and climb all over the playground and go down the slide without feeling out of breath. I am able to run the length of the soccer field without calling for my dad to pick me up half way and carry me, the rest of the way. I now enjoy eating dinner with my family and not getting sick. I’m so excited to see the numbers on the scale go up (8 lbs. in one year!) and be just as tall as my sister. Before the Melody® valve I had heart surgery every six months and was taking many different medications daily. Since the Melody® valve I have not had any other heart surgeries and now I only take one medication a day.

What would you like to tell everyone?

My mommy did a lot of research on the Melody® valve.  Mommy and daddy knew that a mechanical valve would mean I had more surgeries, more often.  They were also not fond of Coumadin and how that would affect my life on a daily basis.  My mommy found the study that Boston did on the Melody® valve. She contacted one of the other mommies whose baby was in the study. She was able to get a lot of information from her and presented this to Dr. Bacha. Please approve the Melody® valve for the mitral position and help another child live a healthier life, like me!

A few words from Cooper’s parents

Cooper is only four years young, but he has changed the lives of many people he has touched.  He is our inspiration, and our guiding light.  He lives every day with a contagious smile, always making everyone around him feel special.  He is caring, loving, and a special big brother to his sister, and brother. We find it very difficult to have a bad day, when Cooper is walking around with his smile letting us know everything will be OK, now that he has his Melody® valve.

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