I am almost 6 months old and have already figured out how to wrap my daddy around my finger. My favorite thing is when my mommy and daddy sing to me, and have dance parties in front of me when I’m in my swing. I’m always smiling and laughing. They think I’m having fun, which I am, but I’m also laughing at their dance moves. I love to be read to, in English and in French. I’m very happy my mommy is teaching me the French language so I can be bilingual. I may have a bit of a bumpy road ahead of me, in life, but with the Melody®, I am equipped to handle the obstacles.
What’s your medical story (the short version)? How does the Melody® fit in?
Twenty-four hours after my birth, I was diagnosed with mitral valve disease, as my mitral valve was severely regurgitating. I feel very lucky because I may have gone undiagnosed had it not been for a mandatory pulse oximetry test to screen for critical congenital heart defects. This newborn screening test, measuring oxygen saturation, is mandatory in the state of Ohio but it is not yet mandatory in all states. I had a rough first few weeks of life, but when I received the Melody® valve at 21 days old, thanks to the amazing team at Boston Children’s Hospital, my health made a complete 180 degree turn and I have been thriving ever since. They tell me I am the youngest baby to have received the Melody® to date. At some point I will need my first balloon catheter to dilate the valve, but for now I am enjoying a symptom-free life.
How do you think your life is different because of the Melody® valve?
The mitral valve I was born with was so dysfunctional that it couldn’t be repaired, it had to be replaced with the Melody®. This valve will limit my open-heart surgeries and with further research, may even eliminate the need for another open-heart surgery, since it can be dilated in the heart cath lab. I am a petite girl, so the hope is that this valve can serve me into adulthood, without having to be replaced for a larger one. There are many unknowns, but what we do know is that the Melody® was the only viable option for me, and it is the reason I am alive to tell my story.
What would you like to tell everyone?
In the entrance of my home, my parents have a canvas with a quote that reads “Your journey is unfolding exactly as it should be”. I believe I was put on this earth to make a difference. The difference I can make is to bring awareness to congenital heart defects and make some noise so that the Melody® valve can be approved for use in the mitral position. This would save lives of other children all around the world.
A few words from Milana’s parents
We didn’t have the easiest introduction into parenthood, but we cannot imagine life any other way. Milana is a true blessing and the strongest soul we know. Every day she teaches us a new lesson and she allows us to see life in the most beautiful way. Without the Melody® valve, we likely wouldn’t be able to share our lives with our amazing daughter. That is a scary thought. We ask you to please support the effort to implore the FDA to approve the Melody® valve for the mitral position, giving children with defective mitral valves a real chance at life.