In the year 2000, during the months of November and December, four baby boys were born within fifteen miles of each other. All were born with a very rare and serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). None of these families knew of each other or knew much about Congenital Hearts Defects. All four of these boys underwent their first open-heart surgery, the Norwood procedure, which is part of a three-staged surgical repair required to re-route their tiny hearts. After surgery and recovery were complete, these babies were sent home from the hospital. Surprisingly, they were all followed by the same home care nurse. We call Nurse Nancy our angel.
Ethan was the first miracle to be born. Nurse Nancy started coming out to monitor Ethan as he recovered from open heart surgery and helped ease the minds of his first time parents as they learned to use the NG feeding tube and to make sense of his confusing medication schedule. Not long after Ethan was born, a little HLHS miracle named Christian was born. As first time parents, Christian’s mom and dad also appreciated having Nurse Nancy stop by to monitor Christian and answer questions. In December, the other two HLHS miracles, Tommy and Brandon were born. After their surgeries and recoveries were over, Nurse Nancy began checking in on these little boys too. She commented on how she was amazed that she was following four little baby boys, all with HLHS, and each one living so close to one another. Ethan ’s mom asked that she give her telephone number out to the other moms to see if they would be interested in communicating.
One by one, we all spoke on the phone. We each told ‘our story’ of how we learned of the HLHS diagnosis in-utero or how we didn’t find out until after our baby was born. Although each of our ‘stories’ were similar, we had our own unique experiences with varying degrees of problems and issues. Once we started talking and e-mailing each other, we all felt a common bond. We no longer felt as if we were the only parents who had a child with a heart defect. Instead, we became encouraged as we drew support from one another.
In March 2001, four moms and four babies met for the first time. It was a rewarding and comforting experience to be able to see each other face to face. That was just the beginning! Over the last four years we have shared so much…laughter, tears, dinners, picnics, birthdays, heart walks, parties, hospital visits, but most of all friendship and support. We carry each other through thick and thin and know that we can count on one another for anything. Some friends meet through school, some through work, and some as neighbors; we... are friends from the heart.
As time went on we each learned of other heart families and one by one welcomed them into our group. We called ourselves 'Heart Moms' and as we grew, we changed our name to Hearts of Hope. This past year we became an official non-profit organization called Hearts of Hope SE MI. Our hope is to share the support and friendship that we have with other CHD families.
We give many thanks to our home care nurse Nancy. She’s 'our angel' who brought us together and started what we are today.
With Hearts of Hope,
Sandy Bilpo (mom to Ethan), Karen Corey (mom to Christian), Colleen Schomaker (mom to Tommy), Julie Pendergast (mom to Brandon)