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Neither Christopher Truxaw nor his parents ever had a reason to believe that he had a heart condition. No one in their family had been diagnosed with heart disease before, and Chris had always been an active boy. He may not have been the most athletic kid, but he still played Little League and soccer. On March 6, 1997 – four days after Tommy Weiss turned 10 years old – Christopher went to school at St. James Academy.
Around 8:15 am that day, Chris started running laps during his 7th grade P.E. class. His mother, Liz Truxaw, was deciding whether she should go to the grocery store before a birthday lunch with her girlfriends. His father, Tim Truxaw, had just arrived at his law office. (He had been at St. James earlier in the morning, as one of the coaches for the school’s math team.) Now, in P.E. class, as Chris ran around the courtyard, he collapsed. The coach found his student in cardiac arrest. Trained in first aid, he started performing CPR on Chris. Doctors later said that if the coach had not reacted so quickly, Chris would have died that day in his class. The fire department paramedics, called by the school officials, arrived within minutes. One of them originally thought a student had just fallen off the monkey bars, but instead they found the coach performing CPR on a lifeless, purple body. They hooked up the boy to a heart monitor only to find that his heart had gone into ventricular fibrillation. They shocked the 12-year-old’s body with the defibrillator paddles. He was barely alive, with an irregular heartbeat. The paramedics intubated Chris, because he could not breathe on his own, and transported him to the local Scripps Encinitas Hospital. His parents and sister soon joined him there.
The first person to approach the Truxaw family in the waiting room was one of the firemen who had answered the call about Chris. Still in his firefighting gear, and with tears in his eyes, the firefighter told Tim that Chris had been in cardiac arrest. Seeing a shaken-up fireman – who faced life-and-death situations all the time – only made the Truxaws realize how grave the situation had become.
The doctors initially had no idea why Christopher Truxaw had gone into cardiac arrest. They asked whether Chris was a drug user, a question that offended Tim. But the doctors were trying to figure out why Christopher’s heart had stopped functioning properly. Thinking it might be a lung problem, they decided to transfer him to Children’s Hospital, home to pulmonary specialists. Before Chris’s transfer, his family saw him for a few minutes, but he was unconscious and remained that way for the next week.
At Children’s Hospital, the doctors soon discovered that Christopher had Hypertrophic Cardiomypothy (HCM), a disease of the heart in which portions of muscle thicken without any obvious cause. As the heart muscle cells increase in size and the heart muscle thickens, HCM also disrupts the electrical functions of the heart. Christopher Truxaw was in the 0.5% of the general population that had HCM. Half the time the disease is genetic and half of the time it is idiopathic, meaning there is no known cause. Christopher fell under the idiopathic category.
Doctors made Tim and Liz aware of how fortunate their son was even to be alive. A cardiologist mentioned that HCM usually was diagnosed on the autopsy table – meaning most people die of HCM without ever knowing they had it. Looking back, Tim realized that the signs had been there. Chris oftentimes would come home from school and mention that his chest hurt in P.E. Two weeks before, during President's Day weekend, Tim had taken his son to Wrightwood early in the morning to go skiing. Around lunchtime, Chris asked to go home.
His parents now knew, but Chris didn’t grasp the severity of his condition. He understood something had gone wrong with his heart, and he made some sense of all the doctors’ technical terms. But just like any 12-year-old, he never feared for his life. Upon waking for the first time in the hospital, Chris had no recollection of what had happened on March 6th. With tubes and I.V.s stuck to his body, he started to curse everybody and everything. He did not notice the display of presents in his room. Hundreds of stuffed animals and flowers from friends and family, dozens of get-well projects from every class at his school, a signed poster of the San Diego Chargers, and a signed magazine photo of Julia Roberts – all had found their way to Christopher's room in the ICU.
Once the doctors diagnosed the cause of Chris's cardiac arrest, they knew that their patient's heart would give out again. They had to implant a pacemaker and a defibrillator into his chest. If Chris's heart ever started slowing down, the pacemaker would send an electrical impulse to speed it up. If Chris' heart ever went into V-fib, like the day of his collapse, then the internal defibrillator would shock his heart back to a regular beat. The Truxaws and the doctors believed that with the high-tech gadgets and medication, Chris could go on to live a semi-normal life with a compromised heart. The doctors, however, warned that the pacemaker and defibrillator might not be a lasting solution. Chris eventually might need a new heart.
After a month in the hospital, Chris finally returned home, right before his birthday. Chris faced a sedentary life compared to how he lived before the collapse. Doctors warned against playing any active sports, but walking, golf, and other low-energy sports were allowed. The newly minted 13-year-old, however, never had a chance to live out this plan. Instead, for the next three months, Chris kept getting sicker and he spent more time in the hospital than in his own house. Though his life consisted of hospital rooms and tests, Chris never shied from needles or blood. He directed his nurses, telling them which vein would be the best for drawing blood. Tim and Liz took turns staying overnight at Children's Hospital, in a cot provided by the ICU. Their lives started to revolve around the hospital and anything medical. Tim, a real estate attorney, even held conference calls at the nurses' station in the ICU.
Friends, family, and acquaintances constantly visited Chris at the hospital and at home, allowing no time for the Truxaws to feel sorry for themselves. Neighbors cleaned the Truxaw's house, mowed their lawn, and made meals for the family. Jacquelyn, 10 years old at the time, still had to go to school, dance class, and gymnastics. Relatives took turns shuttling the girl back and forth to school, the hospital, and to her activities. It became routine for Jacquelyn to leave school at lunch, spend an hour every day with her brother at the hospital, return to school, and eventually go back to her friend’s house. Tim and Liz wanted to protect their little girl from her brother’s situation, but as a result, she oftentimes felt left out and would constantly worry about him.
While Jacquelyn despised being away from her family, Chris despised being at the hospital. He felt jealous of his sister for being able to leave the hospital and spend time with her friends and family. He just wanted to be a normal kid again. Being a shy kid, he did not enjoy the attention he constantly drew from everyone. People always asked him “How are you doing?”, and he would always reply with the standard “fine.” Never would he say that he felt like crap. He did not want to be the special kid with the heart problem. When Christopher finally did visit his school, he even tried to play handball in his wheelchair.
As with Tommy's situation, the doctors went back and forth between good and bad news about Christopher. Eventually, hope diminished; his heart continued to fail and his weight dwindled to 74 pounds. He had become so skinny that the pacemaker and defibrillator, the sizes of pagers, protruded from his body. He could not go to school because of his condition, and missed the last half of 7th grade. The few times Christopher was at home, television became a constant fixture. Because he could barely walk from the living room to the kitchen without his lips turning blue due to the lack of blood circulation, the Price is Right, soap operas, and cartoons became his few sources of entertainment.
Christopher Truxaw joined the national transplant list on May 1, 1997. To Chris, getting a new heart would be just like every other procedure he had endured in the past. His parents remained optimistic about Chris’s finding a heart. They did not really understand how the transplant list worked, and therefore had naïve hopes. On the nights Liz spent at the hospital, Tim would stay up till 2 a.m., surfing the internet to learn more about the organ donation process. The statistics and stories he read about bodies rejecting the organs, and about the death rates, scared him. He did not then know how far immunology and organ transplant surgeries had advanced. With new discoveries daily, transplant patients had even better chances of living normal lives.
The Truxaws soon learned the somewhat perverse rules of the transplant world. The sicker Chris became, the farther up the list he would go and the sooner he would receive a heart. However, the sicker he became, the sooner he could die. Whenever Chris started to get better, the hospital would have to send him home. Once home, the farther down the list he would be. It got to the point where the doctors almost did not want Chris to show any signs of improving because he badly needed a heart. His life expectancy was less than six months.
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