RAS takes toll on Weymouth family

Amanda Hathaway has five children. That’s quite a handful for anyone, but when two of them suffer from forms of arrhythmia, it can be almost too much to bear.

Amanda, who lives in Weymouth, Dorset, was already coping with her son Elliott, who had been diagnosed with Super Ventricular Tachycardia (SVT), a condition where the heart beats abnormally fast, causing palpitations leading to loss of consciousness.

Then her only daughter, Tabatha, came along. Amanda was overjoyed to have a daughter after four sons, but at she knew something wasn’t right with her little girl:

“She would go white and switch off. She would just be staring off into space not blinking.” Then at 16 months old, she bumped her head and became floppy and unresponsive. It was over so quickly, Amanda wondered if she had actually seen it. Shortly afterwards, Tabatha banged her finger in the cupboard door. She went rigid, with her back arching and seeming not to breathe. Amanda screamed in horror:

“I thought she was going to die. I had already almost lost my son when he went into heart failure, and now this.”

In the hospital, after Tabatha had recovered, the doctors told her it was simply breathholding and they were sent home after an overnight stay.

Tabatha continued to have attacks – having nine in ten days where her breathing would stop, her eyes would roll and her body would jerk before losing consciousness – after the worst attack she was unconscious for 40 minutes. Hospital tests revealed she had suffered a seizure and she underwent tests for epilepsy, which proved negative.

It wasn’t until a year after her first attack that Tabatha was diagnosed with Reflex Anoxic Seizure. Still being told it was breathholding, her health visitor had been sent round to teach her how to ‘ignore’ Tabatha’s so-called breath-holding spells, but after talking to Amanda, agreed that she was not breathholding at all and referred her for more investigation.

Meanwhile, Tabatha was due to start pre-school, but the teachers were not comfortable dealing with a child with Tabatha’s symptoms and insisted that she have one-to-one assistance. The family are still hoping to get respite care for Tabatha as it is impossible to leave her with ordinary babysitters – she needs 24-hour care. She sufferers other symptoms such as night terrors, which means she is restless and Amanda can up every hour. When there are four other children to be cared for that makes life very difficult.

The attacks come in batches and in between, it is easy to forget the disruption they cause:

“When she hadn’t had one for three months, she was a totally different child. But then they started again, though much worse, now outside the home as well as just with me. It gets me down when she is having a batch of attacks. I feel so lonely – nobody ‘gets’ it. If it was epilepsy, there would be proper treatment. I wonder, ‘will it never end?’”

Many children with RAS do grow out of full-blown attacks, but Amanda worries about Tabatha’s future:

“I don’t think Tabatha will grow out of them. When she’s at school, will she be able to use the swimming pool? I worry that the teachers won’t take it seriously enough. When she’s older, will she be invited to people’s houses to play? When I think about it, it is overwhelming.”

Amanda tries to make sure she finds time for herself, as well as being mum to five, to keep herself sane. She’s even found time to raise money for the charity STARS, which helps families like hers suffering from RAS. But she says simply that when Tabatha is having RAS attacks, ‘normality stops.’

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