Jeffrey's story
Hypoplastic Left Heart Syndrome
My name is Lenore and I'm mom to Jeffrey who was born on June 06, 1996. When he was 10 days old he went into respiratory distress and was later diagnosed as having Hypoplastic Left Heart Syndrome (HLHS).
After being presented with our options of 1)heart transplant, 2)three staged palliative surgery or 3)compassionate care, we chose the last one and took Jeffrey home to die. Fortunately, with the urging of many of our good friends we sought a second opinion and when Jeffrey was 18 days old he had the first of the three surgeries at Children's Hospital of Boston.
We call him a miracle child not just because he was born with a serious CHD but because he did not receive surgery until he was 18 days old. Without medical intervention most of these babies die days after they're born.
Today, Jeffrey is a happy and healthy little boy. You would not know by looking at him that he has had two open heart surgeries. He runs and plays like any child his age. He may not be able to run a marathon when he gets older but if he's like his mother he wouldn't want to. His future is unknown since it's a relatively new surgery (past fifteen years or so) but isn't the future unknown for us all?
When Jeffrey was diagnosed we did not have another parent to talk to nor were we given any written literature on HLHS and the surgical options. Because we were given a second chance, I felt it was important to give back and help others. I have since founded a support network called LITTLE HEARTS. Not only do we have many willing parents as members to talk with another parent but we donate information to Pediatric Cardiologists in the hopes they will use for their next parent.
Our most recent accomplishment is the picture of HOPE. It is a picture of kids with HLHS ranging in age from 8 months old to 11 1/2 years old. The most recent picture has 17 children in it. Parents came from neighboring states to have their child be in the picture of HOPE! The picture was intended for doctors to show them there is quality of life and hope for children born with HLHS. However, the biggest fan of the picture is the new parents themselves.
Anyone wish to contact me to learn more about LITTLE HEARTS or have any questions about Jeffrey, please contact me at LENORE1231@aol.com. Thank you.
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