Rebecca’s Story
Rebecca was born with a heart problem but her parents didn’t become aware of it until she was in year 1, at the age of six. Her class stood up to recite a poem and Rebecca told her teacher that she didn’t feel well. The teacher ignored it and the next minute she passed out. On recollection, Carolyn says, ‘it also sounded like she was having a fit.’ They didn’t know what was happening so they went to the doctor who referred them to a paediatrician. Some cardiac tests were undertaken. An EEG for the brain and an ECG for the heart were done and both checked out fine.
The incident was left and life continued as normal. She didn’t faint again until the following year when one morning Rebecca rushed to the bathroom to be sick and on the way Rebecca fainted. Luckily, Carolyn was with her at the time and caught her. Confused by her fainting, her mother took her to RPA casualty where she was checked by a paediatrician. They were there for two hours and then sent home. But the same thing happened again around 7 o’clock that same morning. As Rebecca rushed to the bathroom to be sick she fainted. By this stage Carolyn was very upset and wanted some answers as to why she was fainting. They went back to RPA and this time Rebecca was admitted while they ran more tests. Again she was given an EEG and an ECG, which showed up nothing. At this stage the doctors were thinking it was possibly the brain causing this or she might just be a ‘fainter.’ Rebecca was checked out by the paediatricians there and sent home.
A couple of months later she fainted again. At the time, again she was sick with vomiting and a fever. At first Carolyn thought back to what the paediatrician’s had said about her being a ‘fainter’ but something didn’t feel right, call it Mother’s intuition. So again Carolyn took Rebecca to see the same paediatrician from RPA. Again nothing was found during the check up. That was August-September 1998. Rebecca was 8 years old.
New Year’s Eve 1998, while on holidays with her father on the Central Coast, Rebecca same down with another virus, which included vomiting and a fever. Rebecca again fainted in the early hours of New Year’s Eve morning and was taken to the local hospital, Woy Woy, by her Father. Rebecca’s father rang Carolyn for Rebecca’s medical history, and Carolyn jumped in the car and made the drive from Sydney to Woy Woy, thinking to herself here we go again, are we ever going to get to the bottom of this thing. Together, she sat with Rebecca and her Father in the emergency department for several hours before being told that Rebecca needed to be transferred to Gosford to have more tests. Just as the Ambulance officers arrived to transfer her, Rebecca fainted. Luckily this time she still had an ECG attached to her heart and the Doctors were able to get a reading. The Children’s Hospital cardiac department was consulted and they advised Rebecca needed to be transferred to Westmead as soon as possible. The full extent of what was wrong with Rebecca was not realised by her parents. Careflight happened to be on their way back to base from Newcastle, so they made a detour to pick Rebecca up. Rebecca and her Father flew to Westmead in the chopper while Carolyn drove to Westmead. The trip took just over an hour and all the while Carolyn kept trying to push out of her mind questions of why it was so urgent to get Rebecca to Westmead that they had to call Careflight.
When Carolyn arrived at ICU a nurse was waiting to show her to Rebecca and her Father. Rebecca’s Father and Dr Cooper, a Cardiologist at Westmead Children’s Hospital, were waiting to give her the news that Rebecca needed an operation that afternoon to implant a pacemaker. Carolyn was stunned by the news and her first reaction was ‘are you sure?’ All other tests were focusing on Rebecca’s brain and now they were saying she needed a pacemaker. Dr Cooper explained that Rebecca has Heart Block whereby the messages get blocked while being passed through the Atrium to the Ventricle. Carolyn just couldn’t believe it and within a couple of hours, Rebecca was being taken to the operating theatre. Carolyn and her family and Rebecca’s Father waited for news that the operation was a success. Rebecca did not wake up until midnight that night when the staff at the nurses station were celebrating the coming of the New Year. It was 1999. What a way to ring in the New Year.
Rebecca’s stay in hospital lasted 36 hours. They were all exhausted by this time but Rebecca wasn’t in much pain and she was fully healed with no pain at all after just a couple of weeks. There were nerve-racking times. Carolyn watched Rebecca’s every move. It was hard to let her go back to her holiday with her Father and then even harder to send her back to school at the end of January.
Six months after getting the new pacemaker, Rebecca and her extended family of Mum, Grandparents, cousin Rachel and Aunt and 2 Uncles went overseas to Europe for a 7 week family holiday. Rebecca had her pacemaker checked out before leaving and was told she was fine and to have a nice trip. After an 8 hour flight to Bangkok, the family were walking through the transit lounge when Rebecca passed out for a couple of seconds with no warning. this was not good as the pacemaker was supposed to pace Rebecca’s heart if a blockage occurred. An airport official spotted what was going on and Rebecca had to be checked by the airport doctors. Thankfully Rebecca got the all clear from the doctor and was allowed back on the plane for the next leg of the journey to Italy. This was a great relief at the time, as Carolyn did not want to stay in Bangkok if there was something wrong.
Back on the plane, Rebecca passed out and panic started to set in for Carolyn. She thought, ‘this is the worst nightmare every.’ They were going on the beautiful European trip and now the pacemaker didn’t seem to be working and Rebecca was fainting. Arriving at Rome, Carolyn rang the cardiologist who told them to go to the local hospital. They had a bit of trouble finding the right department as barely anyone spoke English and Carolyn and Becky spoke hardly any Italian. Finally they found the cardiology department (Cardiologica in Italian). After seeing the pacemaker engineer, who happened to be one of the pioneers of pacemaking technology, he said the pacemaker had been reprogrammed and was not working. Baffled as they didn’t know how or why it occurred as Rebecca was fine in her last check-up here in Sydney. The pacemaker engineer was talking about doing an operation to fix the problem but finally they reprogrammed the pacemaker and Rebecca was admitted overnight for observation. The staff were very kind but the standard of care in the Rome public hospital was nowhere near the standard of technology and staffing in Westmead. The heart monitor that Rebecca was attached to overnight didn’t even have the alarm switched on, so if there was a problem, who knows if it would have been picked up. Rebecca was given the all clear the next day and once again they were reassured to continue with their holiday and to have a lovely time. The rest of the holiday was without incident, but Carolyn said it was hard to relax and she watched Rebecca like a hawk for the next seven weeks.
Rebecca had her pacemaker checked once they got back to Sydney and no explanation could be found as to how it had ‘reprogrammed itself’. Rebecca’s theory is it was all the airport equipment and security gates she had to walk through. They may never find out why but Rebecca doesn’t walk through metal detectors any more. She flashes her pacemaker identity card and walks around them instead. Since that European holiday, all of Rebecca’s check-ups have been clear and she hasn’t even ‘used’ the pacemaker since 1999.
Rebecca will probably have to have the pacemaker lead replaced sometime in the next two years, as she will probably outgrow it. The pacemaker battery will need to be replaced every ten years or so. Carolyn is hopeful that next time Rebecca will get a twenty year battery.
Because of the pacemaker, Rebecca is not allowed to play contact sports such as football. She does Jazz Ballet and tap dancing, swims and loves riding horses. Sometimes she plays soccer at school (though she’s not suppose to) because the teachers forget what she can and can’t do. It got harder once she hit high school as there are so many teachers and not all of them remember she has a pacemaker. It’s not like you can tell by looking at her. Overall, she leads a fairly normal life.
Rebecca started her HSC this year, she also got her first job (at McDonalds) and now has a second part time job, helping out at the local horse park. She also got her learners permit but not without having to get clearance from her doctor to do so.
Story by Jenny Young.