David Cary – The Life of a Heart Transplant Baby
David and Valerie Cary live in Dallas, Texas, have been married since 1987, and are the parents of three grown children – Austin, Trenton and Allison. David created the web site StillThankful.com to encourage inspire and educate “medical” families, as well as friends and family who want to help but may not know how. From their experiences and talking with others, David created a list of ways to help a family when their child is hospitalized: Help List. He also speaks on the topic of “help,” how it has evolved and what it means for families suffering trauma. And Valerie? She spent two decades focused on Trenton’s health, has passed the torch to Trenton’s wife, and now spends her days painting (and taking care of David).
Valerie and I were raising two cute little boys in late February 1995 when the younger, eleven-month-old Trenton, lost the strength to breathe while being treated in the ER at Dallas Children’s Medical Center. Prior to this, we had no idea Trenton was ill, but now we were learning his heart was enlarged and Valerie had just saved his life by taking him to the hospital. Four days later, Trent arrested and we lost him for nine minutes. Doctors called it a one-in-ten chance that he would come back and yet he did, but he likely wouldn’t live more than two weeks without a heart transplant. Less than three days after being listed, Trent received what the surgeon called an “ideal” heart. And, less than two weeks later, on his first birthday, Trenton came home.
Only hours after surgery, I knew who the donor was. Trenton’s nurse on duty that day called me in the afternoon and said, “I’m so freaked out, I have to tell you I know who the donor is. It’s my neighbor!” I am thus one of the few heart recipient family members to have attended the funeral for his donor family.
We had a chance meeting with our donor family a year later at an organ donor appreciation event and later learned that it was our gift back to them. It was the first time since their baby passed away that the mother smiled, and seeing Trenton running around with their remaining boy brought her back to life.
Normal life for Trent was meds every six hours, checkups monthly, and a full day of exams at the hospital annually. It may not sound normal, but when that’s all you know, it’s normal and that’s OK.
Immunosuppressant meds come with a roulette wheel of potential side effects and the wheel stopped for Trent on cancer when he was a senior in high school. The highlight of this adventure was not chemo, baldness, or late-night hospital visits. Rather, it was Trenton’s attitude. He never complained, and even told a friend, “I’ve been through worse than this; I’ve had a heart transplant.” He also showed no emotion at the last oncology appointment when we learned the chemo worked, so afterward I asked Trent, “what did you think of the news?” Trent responded, “I knew it.”
Just before graduating high school (on time, in spite of missing nearly four months), Trent was granted a wish by Make-A-Wish Foundation. A friend from his senior class, Rachel, had lost her mother to cancer just before Trenton’s chemo began; so Trenton asked, “Could I give my wish to Rachel? She’s been through worse than I have.” That’s not how it works, so Trenton was granted his wish - we met Metallica, but that’s a story for another time.
Trenton began his freshman year in 2012 at the University of North Texas in Denton partly to be near home (a half-hour drive) and doctor Mom. He was excited about apartment life his sophomore year, so it was reason for concern when Trent didn’t feel well, choosing to come home the first night. Although doctors said to watch Trent and bring him in the next morning, Valerie saved his life again, overruling the doctors and driving immediately to Children’s. Soon after arriving at the ER, Trenton’s fever spiked over 104, his blood pressure was dropping rapidly and two bags of IV were quickly sweated out. Blood pressure finally began to stabilize after lowering the head and raising the foot of his bed for the blood to circulate back to Trenton’s upper body, but this effort continued throughout the night before finally settling at a satisfactory level. The next two days required gowns and masks as the source of infection was investigated. Eventually, it was determined that a procedure the previous month had led to an infection on Trent’s heart. Equipped with the cause, we could then receive the cure, but again Trenton didn’t complain, especially when he was able to eat regular food (ICU nurses at a pediatric hospital are not used to seeing the pizza guy delivering to patients).
Valerie is good at worrying, especially about Trent. In fact, I think she may sometimes worry about not having something to worry about. Her worries about the effects of the heart infection were confirmed, however, in March, 2014 when the cardiologist informed us Trenton’s body was beginning to reject the heart, and another transplant would eventually be required. Trenton nonchalantly stated, “Well, it’s got to be June or July, because I’m busy with school.”
Trenton suffered a heart attack on May 21st while running at a friend’s house and was taken by ambulance to Children’s. The next day, following a regular procedure, his heart stopped beating and he left us for six minutes. A few days after recovering, Trent was transferred to Baylor hospital in downtown Dallas, because they were the only program willing to transplant him, being just two years cancer-free. Nine hours after being listed, Trenton received his second heart transplant. What are the odds that someone would receive TWO heart transplants with an aggregated wait time of less than three days!?
Recall Trenton’s requirement that he not miss school. The spring semester ended May 10th. His heart attack was May 21st. He was transplanted May 31st. He left the hospital on June 17th. Rehab lasted until the end of July. A week later, he moved into his fraternity house. A week after that, he started the fall semester of college – missing no school.
How’s he doing since? He’s fine:
Graduated with an engineering degree.
Employed as a software developer.
Married to wonderful Jessica. How wonderful? The night before the wedding, at the wedding rehearsal party, Jessica’s mother and I sat, just the two of us, talking about the event when she said, “A friend of mine asked Jessica if she was concerned about marrying a ‘high-risk’ guy like Trenton. Jessica said, ‘I can marry anyone I want and they could get hit by a bus tomorrow. I’m going to love him while I have him.’” That wonderful.
Between the ages of eight to fifteen, Trenton attended “heart camp” which is a week-long camp for kids with heart issues, staffed by volunteers including doctors and nurses from local pediatric hospitals. Trent loved it and always looked forward to it. This summer, Trent and Jessica celebrated their first anniversary by taking a week’s vacation to be counselors at Camp Moss.
Yes, they lived happily ever after.