Our Family's Double, Heartfelt Riley Connection
Our Riley story actually began several years before our son Mason was born. My husband Mick and I both worked in the inpatient pharmacy at Riley at different times. A mutual friend introduced us in 1998, and our Riley connection began.
Fast forward a few years, after our wedding and the birth of our first child, Maggie, our Riley story developed a new meaning. When Mason was born we noticed that his fingertips were blue, he had a rapid heart rate and things just seemed a little off. We were kept a third night at the hospital for observation and then sent home.
The first two weeks were difficult. Mason wouldn’t nurse well, wasn’t gaining weight, would tire easily and would fall asleep when nursing. We ultimately discovered Mason had a ventricular septal defect (VSD), several holes in his heart and a congenital heart defect. Our pediatrician asked me to take Mason to Riley immediately and to pack an overnight bag for both of us.
I cried when we got in the call, while I was packing and then when we got in the car. Then the crying stopped and I was overwhelmed with mixed emotions:
Sad because we have learned that our son will need heart surgery;
Concerned because we had so many questions;
Relieved because we knew we would get some answers;
Worried because this all sounded complex;
Happy that Riley was less than 20 miles away from our home;
Confident that Mason would receive world renowned care by quality staff, nurses, doctors and surgeons.
Mason’s diagnosis is Truncus Arteriosis. In normal hearts, the main artery branches off to take oxygenated blood to your body and to your lungs. Mason had one major trunk for an artery; he lacked the branch that takes blood to his lungs. The ventricular septal defect that goes along with this condition was actually saving his life. The hole between the septal walls and the other two holes in his heart were mixing the un-oxygenated blood and oxygenated blood in his heart and keeping him alive.
On Mason’s surgery day, immediately after they wheeled him into surgery, Mick and I went to the Riley chapel. We prayed. We cried. We worried. We walked around a little bit, remembering our pharmacy delivery routes. We were worried, concerned and scared; but we knew we were in a good place. Mason’s surgery was a success, thanks to Riley Heart Surgeon Dr. John Brown.
Mason has had two other Riley stays since then, once for nerve damage that affected his diaphragm, and once for a flu virus. We are truly blessed that Mason is thriving and his heart has been healthy all of these years. It's remarkable that he will be ten this year, and that he leads such an active and healthy life. We are thrilled with his stamina and energy. Our cardiology outpatient visits at Riley are lighthearted and fun, as Dr. Eric Ebenroth treats our son like another “cool dude.” Mason will have another heart surgery between the ages of 10 and 15. We know he will receive the best care at Riley and there's no other place that we would rather be when it comes to open heart surgery.
Our family enjoys attending events and fundraisers each year through Riley Children’s Foundation, and Mason has even raised money for Riley by asking for donations in lieu of birthday gifts. We loved visiting Riley’s research lab, the Wells Center for Pediatric Research, where we learned about the advancements that the researchers are making for children with congenital heart defects. It’s an honor for us to share our story to inspire others to donate to help support Riley’s great patient care and pediatric research programs.
Words cannot express the gratitude for everyone at Riley who cares for kids like Mason. We are thankful and blessed.
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