A child’s first year is full of many milestones— first smiles, first foods, first words. But for Sharon and Scott, new parents to a baby named Jonathan, a time that was supposed to be full of excitement and joy was quickly replaced with fear and uncertainty.
Instead of focusing on the exciting firsts that many parents look forward to, Sharon and Scott began writing a new list of firsts. The first time their son would no longer be awaiting surgery. The first time their son would no longer need oxygen or a feeding tube. And the first time their son would get to leave the hospital and finally go home.
'We were so worried'
When Jonathan was born one month early, his doctor in the newborn nursery discovered a serious heart defect, and Jonathan was immediately transferred to Children’s Hospital Colorado. He underwent major open heart surgery within days of being born, and Sharon found herself anxiously waiting for her son to get to experience the firsts she so desperately hoped he would.
“One moment we were thinking we could take our baby home, and the next he was facing the need for a life-saving surgery,” says Sharon. “We were so worried.”
Jonathan’s heart was only the size of a walnut when it was reconstructed. After that first surgery, he spent more than a month in the cardiac intensive care unit and required additional procedures. He needed oxygen and a feeding tube, and medications to help his heart rhythm and function and rhythm.
“That first year of Jonathan’s life was very challenging with many ups and downs. We were always on edge knowing something could go wrong,” says Scott. “We learned to never take any moment for granted.”
A new list of firsts
Over the past 14 years, Sharon and Scott have gratefully been able to add to the list of firsts for their son. They watched him go to preschool, learn how to ride a bike, ski down a bunny slope, run in his first track meet, play in his first baseball championship, and grow into the courageous young man he is today.
Jonathan still has a few lingering complications from his heart disease diagnosis, but he doesn’t let them limit him. He is a sports enthusiast, but sometimes finds it hard to breathe during physical activity. Instead of letting these obstacles sideline him, Jonathan finds creative ways to participate in the athletics, such as playing goalie in soccer or participating in hurdles rather than distance races. Once, he dreamed of becoming a professional athlete, but now he considers becoming a sports broadcaster or reporter as a way to keep his passion for sports alive.
“I’m proud of myself because I haven’t let anything stop me,” says Jonathan. “That may have been how my life began, but look at me now!”
'The only place I'd want my loved ones to be'
Caregivers at the Children’s Colorado Heart Institute are more determined than ever to give every mother the chance to write their own list of firsts for their child. Ranked No. 7 in the nation by U.S. News & World Report, the Heart Institute treats more than 20,000 patients each year. The Society of Thoracic Surgeons has recognized Children’s Colorado with a prestigious 3-star rating (out of 3 possible stars). This grade means that their heart surgery outcomes and patient survival rates are in the top 5 percent of all pediatric heart programs across the country. Heart surgery is scary, but at Children’s Colorado, the Heart Institute is making a tough situation a little easier.
“I felt safe, comfortable, and confident Jonathan was in the best hands possible,” says Sharon. “Children’s Hospital Colorado is the only place I’d want my loved ones to be.”
Children’s Colorado is also writing its own list of firsts with the help of generous donors. Philanthropic support is funding groundbreaking research and innovative treatments and procedures at the hospital every day. Our Heart Institute’s interventional cardiologists were among the first to use minimally invasive heart catheters to reach and repair heart defects in children, making the need for more risky open-heart surgery unnecessary. Our physician-scientists’ organ and heart transplant research has led to new ways of using the immune system to reduce the likelihood of the body rejecting a transplanted heart. In total, there are more than 100 different research studies going on at the Heart Institute — all designed to improve the health and well-being of every child in need.
Thank you to our generous donors for giving big milestones — first laughs, first birthdays, and first days of school — to the patients and families of Children’s Colorado.