Sarah's Heart Valve Journal

On January 19 our precious daughter Sarah Rose was diagnosed with congenital severe mitral regurgitation. We were told she would need open heart surgery to repair her mitral valve. Needless to say the last month and a half has been extremely difficult for our family. The entire focus of our life changed. Instead of preparing for pilot season (I was hoping to go back to work on one of two wonderful projects) or discussing Kindergarten with all the Mom's of Sarah's friends, I had to shift gears and plan for Sarah's Surgery. Because Sarah's condition is extremely rare in children, (in effect she has an old person's disease) it made picking a surgeon very difficult. Repairing the mitral valve is an extremely complicated surgery and requires a super specialist, a surgeon with expansive technical expertise. The inherent contradictions confused and overwhelmed us - We were eventually guided by Dr. David Adams at Mt. Sinai, a world renowned adult mitral surgeon specialist, to Dr. Pedro Del Nido at Boston Children's Hospital. Dr. Adams was the first surgeon we met and he became our guardian angel in the process. The team at Boston Children's, lead by Dr. Del Nido and Dr. Jane Newburger are so wonderful that after spending 7 hours with them for extensive testing on February 15, Sarah felt so taken care of, she actually said, "Mommy, this is the best day of my life." It probably didn't hurt that we stayed at The Four Seasons that night, where upon our arrival they presented Rachel and Sarah with toys and a tray of decorate your own cupcakes Sarah is scheduled for her open heart surgery on March 16. We will travel up to Boston on March 14, her 5th birthday (none of this has been easy - and going up on her birthday makes it even more poignant.) She will have a full day of pre-op testing on March 15. Her surgery time on the 16th is TBD. The operation should take approximately 4 hours. Because it is open heart, she will have to go on a Heart Lung Bypass - (no matter how many times they explain it to me I can't wrap my head around the fact her heart will be stopped) She will be in ICU for two days and barring any complications should be discharged from the hospital in 7 days. We will be staying at The Four Seasons during our entire two week stay in Boston. There is so much more I want to say - I will post as much as possible throughout the next two weeks to keep you updated... Please say a prayer for Sarah and our family on March 16.....

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On January 19 our precious daughter Sarah Rose was diagnosed with congenital severe mitral regurgitation. We were told she would need open heart surgery to repair her mitral valve. Needless to say the last month and a half has been extremely difficult for our family. The entire focus of our life changed. Instead of preparing for pilot season (I was hoping to go back to work on one of two wonderful projects) or discussing Kindergarten with all the Mom's of Sarah's friends, I had to shift gears and plan for Sarah's Surgery. Because Sarah's condition is extremely rare in children, (in effect she has an old person's disease) it made picking a surgeon very difficult. Repairing the mitral valve is an extremely complicated surgery and requires a super specialist, a surgeon with expansive technical expertise. The inherent contradictions confused and overwhelmed us - We were eventually guided by Dr. David Adams at Mt. Sinai, a world renowned adult mitral surgeon specialist, to Dr. Pedro Del Nido at Boston Children's Hospital. Dr. Adams was the first surgeon we met and he became our guardian angel in the process. The team at Boston Children's, lead by Dr. Del Nido and Dr. Jane Newburger are so wonderful that after spending 7 hours with them for extensive testing on February 15, Sarah felt so taken care of, she actually said, "Mommy, this is the best day of my life." It probably didn't hurt that we stayed at The Four Seasons that night, where upon our arrival they presented Rachel and Sarah with toys and a tray of decorate your own cupcakes Sarah is scheduled for her open heart surgery on March 16. We will travel up to Boston on March 14, her 5th birthday (none of this has been easy - and going up on her birthday makes it even more poignant.) She will have a full day of pre-op testing on March 15. Her surgery time on the 16th is TBD. The operation should take approximately 4 hours. Because it is open heart, she will have to go on a Heart Lung Bypass - (no matter how many times they explain it to me I can't wrap my head around the fact her heart will be stopped) She will be in ICU for two days and barring any complications should be discharged from the hospital in 7 days. We will be staying at The Four Seasons during our entire two week stay in Boston. There is so much more I want to say - I will post as much as possible throughout the next two weeks to keep you updated... Please say a prayer for Sarah and our family on March 16.....