CHLOE MAI’S STORY

I am almost 18 months old and I am big time into the Arts. I like to play my piano while I am listening to my classical music cd. I also like to paint like a big girl. I often use a brush to paint pictures on paper as well as other objects that happen to be close by. I also enjoy coloring in a coloring book with my sister. I am getting better at holding the crayons correctly. Do not think for a second that because I enjoy these quiet activities that I am not active. I love to chase my sister around and climb any object that I see. The higher the better. There are a few things I find challenging, but without the Melody®, I would not have the chance to overcome them.

What’s your medical story (the short version)? How does the Melody® fit in?

I was diagnosed at my 20 week ultrasound with a Complete A/V Canal Defect. This means my heart failed to divide into a left and right side and my mitral valve had only one leaflet. I underwent my first heart surgery when I was three weeks old, but my young tissue was too frail to hold the stitches that were used to form mitral valve leaflets. My second surgery was at 4 weeks old and had the same issue. Unfortunately the patches that were used in the surgery to repair my mitral valve did not hold either. My life was at a standstill, my pressures in my heart was being completely balances by the bi pap that I was on and my outlook was not good. At 10 weeks I got the Melody® in the mitral position. Since then I have had one balloon catheter to dilate the valve. It worked great.

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

I have had 3 open heart surgeries so far, and I know I have more; hopefully in the distant future. Had it not been for the Melody®, I would probably be on number 4 or number 5 already, looking at number 6. Because of the Melody®, it is now quite possible I can grow to adulthood, and then keep on going. Without the Melody®, parts of my heart would never be able to grow, and my chances would be much slimmer. I have complex cardiac issues, but things are looking pretty good. Without the Melody®, I would not have much of a chance.

What would you like to tell everyone?

Reading my story might make you think that I am ill-fated, but I do not see myself that way. Boston Children’s Hospital was where my life truly started thanks to them being innovative in just the areas where I needed help. There are kids all around the country and the world that need the kind of help I was able to receive. Please approve the Melody® valve for use in the mitral position, and so many more kids will get the same chance I got.

A few words from Chloe’s parents

Chloe Mai has a smile that simply warms your heart. She is very bright and affectionate. She has a way of working her way into your heart when you are having a bad day and lifting your spirits by just being herself. Without the Melody® valve, Chloe Mai did not have a chance and we know it. Every day now we wake up knowing Chloe Mai’s outlook is favorable. Please support the effort to implore the FDA to approve the Melody® valve. With the FDA, Medtronic, and the doctors at Boston Children’s Hospital, we can give more kids and families real hope for full and happy lives.

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