Claire's Story
Our daughter Claire was five years old when she fainted for the first time. One evening two years ago, Claire fell into my arms during dinner. She simply stared and fell over. I didn't understand what was happening, but she recovered quickly and wanted to finish her dinner. My husband and I were alarmed, but she recovered quickly and even wanted to finish eating. As she seemed to be perfectly normal we attributed the incident to just being a kid. My husband did tell me something similar had happened a couple of months earlier, but at the time he thought Claire was just playing around. The next day things grew more serious. During lunch, Claire was eating when again she stared off into space and then fell over. This time she wasn't so lucky, and she hit her head on the ceramic tile floor. Fortunately, all she suffered was a bump on the head but this time, I knew something was very wrong so I took her to our local children's hospital.
I described what happened to the doctors as a “seizure,” so the ER doctors brought in neurologists. My husband and I had no idea what a faint looked like except for what we had seen in old movies. What Claire did looked nothing like that. She didn't turn grey or clammy. She simply stared for a few seconds and then fell over. She recovered quickly each time and wanted to continue eating. The doctors gave Claire a CAT scan (normal) and hyperventilated her. When she almost passed out from that test, they diagnosed absence epilepsy and offered us the choice of two powerful drugs. We were devastated; epilepsy had never crossed our minds.
We decided to hold off on medicating Claire until we knew more about the medicines. We made an appointment to see another neurologist that week who agreed with that but recommended an EEG and other tests which were all negative for epilepsy. Claire hadn't had an episode in the two months she had been having the tests and so we told neurologist we were sure everything was over and we would never see him again.
Of course, the next week I was proven wrong. Claire collapsed while eating dinner. She started staring and then fell out of her chair. She described feeling as if her head were “vibrating.”
We took her back to the neurologist the next day. He told us he suspected she was having seizures deep inside her brain but said the only way to verify it was exploratory surgery on her brain, which definitely wasn't called for. He couldn’t explain why these episodes happened only while Claire was eating, but suggested we take Claire to a cardiologist.
The cardiologist took about five minutes to diagnose Claire with deglutition syncope. He explained that the electrical system in her heart malfunctioned sometimes while she was eating causing half of her heart to stop beating (heart block). Structurally, her heart was perfect as the EKG and a scan showed. We had never heard of this condition, but fainting seemed to be much better than epilepsy!
Claire was given a 24-hour event recorder that recorded her heart while we kept a written record of her activities. We learned that Claire was having 2-3 second heart pauses without exhibiting any symptoms. Our cardiologist told us that during her faints, her heart pausing was much longer which concerned him and suggested Claire be fitted with a pacemaker. Again, we were shocked. A second opinion from another cardiologist confirmed that a pacemaker was the only treatment for this kind of syncope – drugs wouldn't work. We also investigated whether a slight reflux problem could be contributing to the heart block, but a battery of tests ruled that out.
My internet searches revealed that swallowing-induced fainting was rare, especially among children. The lack of information was incredibly frustrating. Then I found Trudie and STARS. The information and resources she gave me were invaluable! Trudie shared Claire's case with several doctors who gave me a variety of perspectives on Claire's condition. My husband and I debated over the pacemaker for months. Claire hadn't fainted in a year, but she was regularly having 2-3 second heart block. What scared us even more was it happened a couple of times when she wasn't eating. Evidently, sometimes eating would tip Claire over the edge into fainting.
We finally agreed to have the pacemaker fitted when our doctor told us he believed her heart block would get worse as she grew older. We had visions of Claire fainting while driving and crashing or hitting her head and ending up with brain injury (something our cardiologist had seen). So, just after her seventh birthday, Claire got her pacemaker and she hasn't had any problems since. Currently her pacemaker kicks in 0.6 percent of the time, which works out to be roughly every three minutes. She has adjusted well and is happy that she doesn't have to sit in a special chair in the school lunch room (to prevent her from being injured if she falls). My husband and I don't have to worry and watch her like hawks during meals. We are profoundly grateful that we had a neurologist who listened to us and sent us to a cardiologist relatively early in the process. When we realized how many people are misdiagnosed with epilepsy, we are so grateful that we didn't have to walk to that difficult road for very long.
During this whole process we've learned a lot about fainting and medical care in the United States. Luckily we have excellent medical insurance. Without that, Claire's story would have been quite different. We also learned how much doctors don't know, and how much we have to educate ourselves. The ER doctors were caring and professional but relied on our description of events too much. We called the episodes “seizures” so we were tracked to neurology. I think if we had called the episodes “faints,” we would have immediately been tracked to cardiology. Again, I have to thank Trudie and STARS. I haven't found an organization like STARS in the US, so I hope one day Trudie might start something over here!
Mary