In May of 2005 our first son Ethan Markus was born... a joy-filled fighter.
At our 20 -week ultrasound, we learned that he had aortic stenosis with evolving Hypo Plastic Left Heart Syndrome (HLHS). Immediately we were thrust into a world we did not know existed.
We heard words like congenital heart disease, surgery, "if he makes it to birth". Words that pierced our hearts, and also words that sent us on the most amazing journey life could offer.
During Ethan’s in utero diagnosis we learned about an innovative procedure being done at Boston Children’s Hospital to open the aortic valve in utero and perhaps reverse the evolution of HLHS. On February 1, 2005 we were the 30th family to agree to Fetal Cardiac Intervention. We traveled to Boston from our home outside Chicago to access this innovative treatment for Ethan. We were propelled by hope. We wanted to give Ethan the best chance at life. We would do anything for our son. We would go on to travel to Boston many times in the next 7 years, ultimately sleeping over 600 nights in the hospital with Ethan, and living in Boston for collectively 2 years. Ethan would undergo some of the most innovative cardiac surgeries available to date to treat his heart disease. He was a pioneer. We were pioneers.
While Ethan faced some of the hardest times any child could, he was filled with joy. He always said “I will try”. He inspired the many hundreds of people who followed his story on Caringbridge. He brought immense JOY to our life through his witty and ingenious personality. He filled our house with laughter and music. He taught us that life is about loving each other, making a difference, saying yes to life even when it’s hard, and about dancing through it all.
Ethan died in June of 2012 after a 13-month hospital stay. During that year we moved our family between Boston, Milwaukee and our home outside Rockford, IL. Amidst living in crisis mode, we tried to think clearly and make the right decisions for Ethan. We gave birth to our 3rd son. We managed finances, worked hard to parent Ethan in the hospital and our other 2 boys in a rented apartment. We hired a nanny so we could split our time between our boys while Erik flew back and forth between Chicago and Boston to maintain his job. We gave our all. We were committed to doing anything we could for Ethan. We would have given him our very hearts if we could.
This foundation is not about a sad story of an amazing child who went through awful stuff and did not make it. It’s about hope. It’s about making a difference. It’s about taking our story…our pain… our joy…our love…Ethan’s love… and spreading it around to others. We stood on the shoulders of many families who came before us. Years before Ethan was born these parents and children agreed to surgeries that were perfected with years of struggle to allow us to experience the gift of Ethan. And the families to come will stand on our shoulders. The work of this foundation is born of our love for Ethan that we hope will extend to many families that will come after us.
It’s an honor and privilege to be Ethan’s parents and to use our experiences to build a better and stronger future for the families facing congenital heart disease (CHD). We’ve come a long way in treating CHD, but we have a long way to go. We must practically support families so they can access the best care for their child, we must improve communication between families and doctors as we continue to innovate and craft better surgical techniques and outcomes, and we must treat the whole patient. First children born with CHD are children with hopes and dreams. Second they are patients with sick hearts. We must provide places and spaces for children to be children as they travel the journey of their special heart.