In February 2015 Caleb was only 9 months old when he suffered a massive heart attack due to an atypical case of Kawasaki’s Disease. He was listed for heart transplant after a second heart attack and with the realization that he would not survive otherwise. While waiting in the pediatric ICU at A.I. DuPont Hospital, he received a heart transplant on May 17, 3 days after celebrating his first birthday. Although Caleb’s new heart was working well, he was having trouble eating and had a feeding tube placed to ensure adequate nutrition and hydration. He learned to wear a little backpack that carried his feeding pump and battled many stomach problems. He was receiving feeding therapy and finally had his feeding tube permanently removed in the fall of 2017.
Today, Caleb enjoys running, swimming, driving his Jeep, and attending preschool like other four-year-olds, but his twice daily immunosuppressants to prevent his body from rejecting his new heart lower his resistance to “bugs, ” so he does not have a perfect attendance record! A simple cold or stomach bug could land him an admission to 2B or the ICU and Caleb has had many. Annual heart catheterizations and biopsies help to detect any signs of rejection on a cellular level. Both biopsies from 2017 and 2018 showed rejection that required high dose steroid treatment and isolation to prevent sickness. Thankfully, there were no signs of any heart failure or narrowing of any of his vessels (as coronary artery disease is very common in heart transplants.)
As the physician described when Caleb was listed for transplant, it is not a cure. We traded one condition (heart failure), for a chronic condition (transplant). Rejection will always shadow Caleb and more than likely he will need a second or maybe third transplant in his lifetime. But, new technologies are being discovered, and we look forward to seeing the plans God has for his life.