Congenital heart disease has a robust history of patient pioneers – the first people willing to take a chance on medical options or to find treatments not currently available to combat the reality of being born with a severe heart defect. History doesn’t always remember the names of those brave individuals that have been asked to be the first ones to take a risk for the hope of a bright future. However, for Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS), there’s one family name that will always be remembered – Rubeck.
In 2013, April and Ryan Rubeck found out they were expecting a little boy. They were thrilled and filled with joy and then hit with the devastating news that their unborn baby boy was missing half of his heart.
“We were referred to a hospital a few hours away but the doctor there told us to plan to take our son home to pass away. They never really gave him any options. We knew that wasn’t going to work for us so we immediately got online and started searching for other solutions,” recalls April.
That’s how the Rubecks came across Mayo Clinic so they packed their bags and traveled to Rochester, Minnesota to be seen by care providers specializing in congenital heart defects. It was there, waiting in the lobby to be seen by the doctors that they saw a magazine featuring the Todd and Karen Wanek Family Program for HLHS program that highlighted ongoing research studies at Mayo Clinic.
“We knew right then and there that we had to meet with Dr. Nelson, the director of the HLHS program. In addition to all the information Mayo provided us about clinical options, Dr. Nelson explained a new clinical trial using stem cells collected from Roman’s own cord blood that had never been done before,” recalls April. “If Roman was to participate in the clinical trial, it meant that he would be the very first child to receive stem cells. I remember looking at Dr. Nelson and asking what was in it for him and if he would do it for his own children.”
It’s hard to truly comprehend what a parent goes through when trying to decide if a clinical trial is right for their child, let alone a clinical trial that has never been done before. A first-in-child clinical trial means that there is no other child that has had the treatment. As a parent, you have no idea what to expect. It means that you don’t have another heart warrior family to help gauge expectations because no one has been down the path before. It means that you are handing your child’s future to a team of doctors and researchers and hoping that all of their efforts have led you to the right place at the right time. It means you and your child have been asked to be pioneers in order to help future heart warriors that you haven’t met and probably never will.
One could argue it’s the hardest decision a parent could ever make in their entire life - one filled with the uncertainty that will never be forgotten by anyone that was actually in the room at that moment.
And yet, April and Ryan Rubeck made the decision to give their beautiful, happy baby boy every chance at the brightest future possible including participation as patient number one in a new clinical trial. They did it for Roman who inspired everyone, every day with his larger-than-life, infectious smile. And they did it for every baby with HLHS to come.
The first decision the Rubecks had to make was to collect umbilical cord blood at the time of birth. This part of the clinical trial was straightforward and made without hesitation as it presented little concern for the safety and well-being of both Roman and April. However, like many infants born with HLHS, the first days, weeks, and months in the hospital presented new challenges and highlighted how strong and fragile these babies are with ever changing realities. The daily decisions and conversations about what is next, what could happen, what should be expected forces the most resilient families into uncertainty and fear of the unknown. Families become dependent on the trust and commitment of their health care team to guide each step down a path.
Then the day came for the second open heart surgery. It was during this surgery that the stem cells collected from Roman’s umbilical cord blood would be injected into the heart. The care team had prepared for this day unlike any other. Even though years of work led to this point in time, this procedure had never been performed in a patient with HLHS and, thus, the cloud of uncertainty was experienced by everyone involved. The true pioneers of that day were the Rubecks. Their choice meant that there could be new solutions in addition to the three open heart surgeries. It meant they might be able to provide Roman’s tiny, fighting heart with the extra strength it needed to carry him through each day.
But, above all, it meant hope. Hope for today and hope for the future.
Roman received stem cells on October 8, 2013. This was the first time in the world that any baby had stem cells injected directly into the heart muscle at the time of open-heart surgery. It was a first that will never be forgotten as Roman paved the path for children with HLHS. Roman did extremely well following this cell-delivery and surgery. He was a thriving infant and began meeting major milestones that were placed in front of him. However, in addition to cardiac surgery, he also required multiple surgeries in his belly. Three months later, a perfect storm of unpredictable events settled in to precipitate a series of challenges that would result in outcomes that every HLHS family fears. In the years of mourning following their loss, any family would look back at every decision in retrospect from every possible perspective. One prevailing and enduring truth is the legacy that Roman, April, and Ryan pioneered during a time of vulnerability and uncertainty. Their commitment to endure the undulating reality of congenital heart disease on top of the uncertainty of research and innovation is not comprehensible by most and intensely respected by few.
It is because of the Rubeck family’s courage, trust, and hope that children throughout the country now have participated in the first FDA-monitored clinical trial that will soon come to completion. Their bravery and willingness to give all babies with HLHS a new hope for a more certain future is an irreplaceable gift to the HLHS community. The Todd and Karen Wanek Family Program for HLHS will be forever grateful for the trust, commitment, and partnership that the Rubecks have pioneered.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.
Liked by Lisa Lucier, Connect Moderator