From heartbreak to hope. Despite a devastating heart diagnosis for their sweet baby boy, a Lowcountry family is doing what they can to raise awareness for the American Heart Association. Jessica and Hampton McDevitt are our Everyday Heroes.
Looking at one and a half year old Hampton McDevitt, you would never know he’s living with a terminal medical condition. He’s a laughing, stairs climbing, busy toddler. “He’s a precious baby. He’s so precious. He’s definitely happy go lucky, and just loves everything. He’s a very sweet sweet child,” says his mother Jessica.
Hampton was born with a congenital heart defect. Right now, he has half a heart and half of one lung. Jessica says, “He is a walking miracle. We found out about Hampton’s heart defect when I was eighteen weeks pregnant with him. At our big anatomy scan appointment they could only see half of his heart, and so we went to a series of specialists, and found out he had what is called single ventricle heart disease, which means only half of his heart formed. It is a very significant diagnosis because there is no cure for it, and the treatment is three open heart surgeries among other things potentially. Ultimately a lot of these kids will need a heart transplant.”
Hampton had his first open heart surgery when he was four days old. He also developed another terminal illness. Jessica says, “We found out before his next stage surgery that he had developed a secondary disease called pulmonary vein stenosis. It’s terminal, and no cure for it, and very little treatment for it. Then we learned that the disease had progressed. This was when he was about seven months or eight months old, and we put him on hospice. I think our prognosis for him was an estimated four to eight weeks to live roughly. This time last year, we talked through everything. We planned his funeral.”
Hampton exceeded medical expectations. The McDevitts traveled to Boston for further treatment. “He had his two open heart surgeries. He had a G-tube surgery, and his caths in Boston. Basically Boston was very kind to us, and they said we hope we’re wrong, and we hope that he beats the odds, but essentially there is nothing more we can do for you, and so again second time sent home on hospice, and just kind of wait and see,” says Jessica.
Even with the grim diagnosis, the McDevitt family is still working to help others. They are ambassadors for the American Heart Association. Jessica says, “I was very excited about the potential of raising more awareness, and more understanding, and more compassion, and hopefully at the end of the day my real desire would be to raise more money for research for congenital heart disease. That’s something that has been heavy on my heart. What’s causing this? If we can nip it in the bud on the front end, and not have to go through what we’re going through.”
Through a cloud of heartbreak, the family sees hope. Jessica says, “He’s almost two, and has lived for a very long time with it, so we’re thankful for that for sure. I just hope that this story can encourage somebody. Maybe they got a bad diagnosis. Maybe they’re about to get to one. We’re as bad as it gets I think. Learning that your son is terminal and has been for a while is absolutely heartbreaking, but there is so much joy on the ride. Life is good in the midst of horrific heart disease.”
When asked what she sees when she looks at Hampton, Jessica says, “My buddy and hope. Hope. It will break my heart to lose him. It will break my heart, but we have had so much more time with him than we expected. I got to hear him say mommy, and got to hear him call out for Miller and daddy. All of those things we will hold onto forever, that we never expected to get to see. I see heartbreak, but I also see extreme hope, extreme hope.”
The McDevitt family will be honored at the American Heart Association’s Charleston Go Red Luncheon, Thursday May 23rd, at Hotel Bennett at 11a.m. Count on 2’s Octavia Mitchell will serve as emcee. For more information, head to heart-dot-org.