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Our Kids
Today, Ethan is 3 years old and doing great. He has had his struggles and still sees doctors and therapists to help him with his needs and delays. Overall, he is just a 3 year old little boy who loves to play, run, climb and spend time with his dog Zoe. His smile is contagious and his spirit is strong. We are eternally grateful for Ethan and for this journey. We are better people because our life has been blessed by our special boy.
Our Mission
Our Mission
is to provide financial, logistical and emotional support to families facing a complex Congenital Heart Defect (CHD) who choose to travel for a Fetal Cardiac Intervention and follow up care to treat this defect.
Our Philosophy
We believe that each child’s life is special and unique. We believe that children with congenital heart disease deserve the best care possible. We make it our life’s work to support institutions that research and put into practice ways to diagnose, treat, and prevent single ventricle congenital heart defects. We seek to bring HOPE to families facing this difficult diagnosis and we commit to helping our communities be places where these families find support and where their children thrive.
Vision
Nationwide, other institutions are initiating or considering the development of a fetal cardiac intervention program. We are excited to see this trend and to know one day this prenatal treatment will be offered “closer to home”. As these programs gain the expertise, experience and demonstrate measurable results we hope to help families access their care as well.
Why the Fetal Cardiac Intervention Program?
The Fetal Cardiac Intervention is a pro-active treatment option for one of the most difficult to treat Congenital Heart Defects, known as Hypoplastic Left Heart Syndrome or Hypoplastic Right Heart Syndrome (HLHS/HRHS). Under the umbrella of single-ventricle defects, children born with HLHS/HRHS have had very challenging beginnings and lives. It's only in the last few decades that doctors have perfected palliative surgeries to help these children live and thrive. While great strides have been made, the future is unknown for many of these children. It is in this light, that the fetal intervention was initiated by a team of specialists from Children's Hospital Boston and Brigham and Woman's Hospital in 2001.
This prenatal procedure seeks to interrupt the progression of HLHS/HRHS by dilating narrowed heart valves in-utero. These valve dilations allow for increased blood flow to the defective ventricles to promote ventricular growth. Some children post-procedure have been born with two ventricle hearts and have not needed the palliative surgeries at birth. Others still need the palliative surgeries, but their defective ventricle is able to contribute to their circulation with the hope of preserving heart function in the long-term.
This program and the team involved have given great HOPE to many families. In turn, it is our hope that the future may be changed and brightened for children facing single ventricle defects.
Ellianna Grace:
The Ellianna Grace Foundation was established in memory of our daughter and friend, Ellianna Grace Dietzel. Ellie was a light of hope to many families and doctors by the way she excelled medically after a pioneering treatment for Hypo Plastic Left Heart Syndrome (HLHS) and by the way she took on her life with happiness and courage. Ellie died from an accident unrelated to her heart. It is in her honor, this 501c3 foundation was established to keep her light of HOPE growing and to nurture this HOPE in the lives of those touched by congenital heart defects.