ALLIE’S STORY

My twin brother, Aiden and I were born October 27. 2010. We live in Louisiana. My brother is my best friend and I do not like to be separated from him. After my most recent open heart surgery, the only thing I wanted was to get home to Aiden so we could eat gumbo together.  The fact that I love to eat gumbo is a pretty big deal. You can read about why below.

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

Everything seemed fine. My Mom had a healthy, uneventful pregnancy with my twin brother, Aiden and me. We were full term twins; born at thirty-seven weeks.  I was quite petite (just under five pounds) but because I was a twin, no one seemed worried. Then, Aiden started thriving and gaining weight like crazy and I was struggling to eat and lived in what I call Vomit City. When I wasn’t in Vomit City, I was at my pediatrician’s office.  At first everyone thought I had colic and acid reflux but when I was ten weeks old I got very sick and was taken to my local emergency room. They took some crazy pictures where you could see my bones and in those pictures my super-sized heart showed up. After an echocardiogram and cardiac cath everyone started talking fancy and using lots of letters of the alphabet. They said I had two large VSDs, an ASD, coarctation of the aorta, mitral stenosis and a parachute mitral valve. I thought parachutes were pretty cool but they assured me that was not the case when it comes to heart valves. Bummer. My local hospital fixed my aorta and put a PA band on. My local doctor was a good doctor and wanted another opinion.  He found Dr. Lock at Children’s Hospital Boston. They hoped my mitral valve could be fixed by Dr. Lock in the cath lab but it turns out it was too far gone. At five months old I had my first open heart surgery. Dr. Emani closed my alphabet issues (VSD and ASD). He also took the PA band off my aorta and made what repairs to my mitral valve that were possible. It took me a long time to feel better.  Sadly the mitral valve repair only lasted four months and at nine months old I had my second open heart surgery. Dr. Emani had hopes of repairing my native valve but that wasn’t possible.  My doctors consulted and decided I was a good candidate for a Melody® valve in my mitral position.

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

I don’t mean to brag, but I am only the second child to have the Melody® valve placed in the mitral position.  Since receiving my Melody® valve things have only gotten better and better. Now I can keep up with my brother and I don’t throw up every time I eat.

What would you like to tell everyone?

I am what you would call “the baby girl without a chance”. Our local hospital didn’t have much hope for me. They could only do so much. Kids with a mitral valve problem as severe as mine struggle to get to their teen years and possibly need a transplant. The doctors originally predicted I would have a poor quality of life. Things looked really bad for me. Thankfully my mom and dad made the tough decision to take me on my first medical plane ride to Boston to get the best possible care for my beautiful heart. Thanks to Dr. Emani for putting a new song in my heart called the Melody® valve.

A few words from Allie’s parents

Allie used to be categorized as “severe failure to thrive”.  She was a pretty sick and miserable baby. Once we got her home she took off after receiving her Melody® mitral she was happy and finally looking healthy. Her throwing up and other side affects from her mitral stenosis went away. She was walking by just 16 months old! She has had a few cardiac catherizations since having the valve placed and another open heart surgery but this was due to separate cardiac defect (sub aortic stenosis). Today she is doing great. She is three and a half years old and not just alive but thriving. We think this is all thanks to the Melody® valve!