GRACE’S STORY

I’m 19 months old and I love to smile and wave at everyone!  I especially love my big brother and sister (they are always loving on me and helping me learn new skills), my dogs (they let me tickle them and even pull on their hair and tail), and my mommy and daddy (I’m really a daddy’s girl, but mommy totally understands).  My favorite thing to do is tickle people because I love to see others smile.  People always tell me that I have encouraged them and / or inspired them in some way, but I’m just being who God created me to be, extra chromosome and all!

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

I was diagnosed with coarctation of the aorta and unbalanced AV canal defect (right dominant) at 30 weeks via ultrasound and my parents learned that I would be genetically enhanced with an extra 21st chromosome (Down Syndrome, which we call Up’s) at 32 weeks.  I had the coarctation of my aorta repaired at 2 weeks old at my local hospital in Houston, Texas (Texas Children’s) and they were planning to move me closer to becoming a single ventricle at about 6 months old. However, God led us to Boston in an effort to have a biventricular repair (single ventricle palliation in children with Up’s does not typically have a good prognosis long term).  I had a staged surgery in preparation for the biventricular repair (in an effort to grow the left ventricle), where they closed my ASD and common valve. My mitral valve had always been very small and stenotic.  I was ready for the full biventricular repair at 14 months and I had an amazing recovery, however a few days after being back home in Texas, I was having trouble breathing, so they had to admit me and everything went down hill from there.  I had to be emergently intubated and flown, via air ambulance, back to Boston.  They learned that my mitral valve had developed severe regurgitation, so they tried to repair it.  I didn’t recover well from that surgery, so they decided to replace it with the Melody®.

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

So far, I have had 5 open heart surgeries.  My home hospital didn’t think that there was much hope for me to survive after I got sick with severe mitral regurgitation and they weren’t very excited about putting in a mechanical valve because of all of the risks.  The decision to put the Melody® in the mitral position, by our team at BCH, was such a huge blessing because I made a miraculous recovery after getting the Melody®.  Everyone prayed that the Melody® would make my heart and lungs happy again and those prayers were answered.  My mommy was especially happy because the Melody® can “grow with me,” but the fact that I don’t have to be on Coumadin is a huge blessing too because there have already been plenty of times that I have bonked my head and if I was on Coumadin those bonks would have required an emergency room visit.

What would you like to tell everyone?

I second exactly what Ari said!  That’s exactly what I would want to tell people too!

A few words from Grace’s parents

Grace Astrid Ross has blessed our lives in ways that we never could have imagined and she’s only 19 months old.  Somehow this little girl blesses everyone that she knows or even meets in passing.  We have witnessed first hand the life that the Melody® in the mitral position has given our daughter.  She was so very sick before receiving her new special valve and now, just 3 months later she is not just surviving, she is thriving.  Our prayer is that other families and children would be blessed with life abundantly, thanks to the innovation of the doctors at Boston Children’s Hospital and Medtronic for making the Melody®.  The only way to improve upon this life changing story would be to customize the Melody® to be better suited for the mitral position and to get it FDA approved for the mitral position, so that hospitals across the country could offer this life saving strategy to their patients. Thank you for your commitment to our children (and countless others) and the betterment of medical technology.