Ellie’s Story

Our daughter Ellianna Grace was born January 27, 2005 at Children’s Hospital in Boston. While just twenty weeks pregnant, my husband Dan and I learned Ellie was afflicted with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Due to the condition, Ellie’s heart was not forming normally and she would need at least three open-heart surgeries over two years if she was to survive. Without the surgery there were only two choices: we could provide Ellie with comfort care at birth until she passed away after a few days or choose an abortion.

All we could think about was how to do the best we could for Ellie. While searching for the best surgeon locally, we learned of Boston’s fetal intervention program. At Children’s Hospital in Boston, doctors were performing aortic valve ballooning on babies while still in the womb in an effort to reverse or stop the progression of HLHS. After talking with the cardiologist in Boston and learning the risks were minimal, we opted for the surgery, which occurred in October of 2004.

The procedure was extremely helpful. As the pregnancy progressed, we saw Ellie’s heart function improve and her heart chambers grow. She spent three weeks in the Intensive Care Unit (ICU) after birth and was able to come back to Minneapolis without any cardiac intervention. While cardiologists followed her progress throughout Ellie’s life, our early concerns dissolved as we watched Ellie grow and thrive.

 We continue to feel grateful for Ellie’s health after the fetal intervention and for the support and help we received from family during four trips to the hospital. At Boston Children’s we met families from all over the world and saw children and babies fighting to live with heart disease. Their faces and struggles have stayed with us, even to this day.

Ellie lived for seventeen months, full of life and curiosity. Ironically, when her life ended, it was not due to heart disease but from an accident-related injury. As I write this, it has been two years since we lost Ellie; Dan and I are as equally heart-broken as we are grateful that Ellie was a part of our lives. We are sharing Ellie’s story because we cannot go on without looking back at all we experienced and learned. Our dream is to help others in similar circumstances cope with the financial and emotional strain of caring for children with congenital heart defects. For those reading this and those who will find their way to it, the Ellianna Grace Foundation was founded.

 

To learn more details about Ellie, please read on.