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From the Summer 2003 Issue
Patients Talk
Young Defibrillator Patients
Heart rhythm problems can affect people at any age. Lani Te Wao-Jones and Jonathon DeLuca experienced fainting due to abnormal heart rhythms when they were small children. Both received pacemakers—and eventually—implantable cardioverter defibrillators (ICDs). And both are now teenagers who are active in sports and leading busy lives.
Lani Te Wao-Jones
Lani Te Wao-Jones of Invercargill, New Zealand was plagued by shortness of breath and fainting episodes as a child. Her mother, Susan, noticed something was wrong only a few weeks after Lani's birth in 1987.
At first the episodes were thought to be sleep apnea. So the family rented a monitor that would trigger an alarm if her breathing stopped while she slept. "The alarm went off dozens of times," Susan explained. At Susan's insistence, Lani finally saw a heart specialist. The doctor found that both Susan and Lani had a rare condition that is sometimes hard to diagnose.
Lani had a pacemaker implanted in October 1999, and things went fine for 2 months. But she lost consciousness while swimming with her father. "The pacemaker recorded my heart rhythm, which was 380 beats per minute," said Lani. "So they decided to replace my pacemaker with an implantable cardioverter defibrillator [ICD], because it was obvious that I needed a different kind of protection."
Lani received her ICD in January 2000. On her doctor's advice, she has had to discontinue her beloved water sports. That type of exercise seemed to trigger the arrhythmias. "I love camping and skateboarding, but I do miss swimming. Still, now I have a defibrillator that's geared to save my life. That's all I need to know, so I don't think about it much."
Lani's mother, Susan, was also implanted with an ICD at the recommendation of her doctor. Other members of her family were tested and also diagnosed with the same medical problem. Two of Susan's sons, a sister, and a nephew were all found to have it. "My oldest daughter, Tara, died at 10 while swimming. We now assume that she had the same condition," said Susan.
Lani's mother finally feels that Lani has the protection she needs. "Lani is my hope. I lost Tara, and I'm not going to lose Lani, too. I'm doing everything I can to keep her here with us."
Jonathan DeLuca
Jonathan was diagnosed with a rare heart condition when he was just 4 years old. He has been on medication since then, and he was implanted with his first pacemaker when he was 8.
"The doctor examined me very carefully when I passed out as a small child," explained Jonathan, "because a brother of mine had died unexpectedly at 13. My brother had had fainting episodes earlier but was never diagnosed. I never knew him, because he died in 1982, and I wasn't born until 1983."
Jonathan did well with his pacemaker for 2 years. But when he was 10 he had a sudden cardiac death episode and needed CPR. "That's when my doctor decided it was too risky for me to be without an implantable cardioverter defibrillator [ICD]. So I had one implanted when I was 10. Since then I've never had a fainting episode."
According to Jonathan, one of the main advantages of having a defibrillator is that he could be active again. "When I was younger I couldn't play school sports because of my heart problem. When I got a defibrillator, my doctor said I could play sports."
"Now I play in a basketball league every Sunday. I can do pretty much anything I want when it comes to sports. When I was little, I was puny compared to other kids. But I have a lot more bulk now that I've been able to lift weights and participate in sports."
Note: Individual symptoms, situations, and circumstances may vary. Please consult your physician or qualified health provider regarding your condition and appropriate medical treatment. The information provided is not intended to be used for medical diagnosis or treatment or as a substitute for professional medical advice.