Terrifying day Lewis stopped breathing

By Julie Bartram IMAGINE how you would feel if one minute your child was playing happily and the next he was unconscious on the floor. His body stiff, his skin deadly white and you could find no pulse.

That's exactly what happened to Lewis Nicholls when he was 10 months old.

Mum Sarah, 31, said: "It was absolutely terrifying. He slipped and winded himself as he fell.

"He was just out cold and wasn't responsive at all. The colour just dropped out of his skin and he was a deathly white colour.

"I ran out into the street with him in my arms to try and get him some fresh air, I was splashing water on him, anything I could think of.

"I checked his pulse, but it had stopped."

But when Sarah, of Wellfield Terrace, Gildersome, got Lewis to casualty he had regained consciousness.

"They thought I was an over-anxious worried mum who couldn't check a pulse properly. But I was convinced it had stopped."

Sarah, who is married to Mark and has another son called Tom, was sent home and told her baby was fine.

Since then Lewis's turns have been a regular occurrence but now his parents do not even have to call a doctor when he collapses.

This is because Lewis suffers with a rare heart defect – which needs no treatment – and they know how to cope when he passes out.

Lewis has Reflex Anoxic Seizures (RAS). It means any unexpected noise or shock can cause his heart and breathing to stop – a balloon popping once caused a seizure.

When Lewis suffers a seizure he goes limp, collapses and can become deathly white or pale grey. His jaw may clench and his body can go stiff.

After about 30 seconds his heart and breathing resume and Lewis will be unconscious. It can take from two minutes to an hour for a child to come round.

Although some parents say their child looks like they have died when they collapse, the condition is not life threatening.

"Because we know about the condition now, we know what to do when it happens. We just have to put him in the recovery position." said Sarah.

The family took Lewis to casualty and their GP several times before his condition was diagnosed.

Eventually he was referred to a consultant at Leeds General Infirmary, but the family had a three-month wait before their appointment.

"The consultant recognised the symptoms straight away and explained it to us. He gave us a leaflet with details of a charity that help and offer advice.

"It was such a relief, it was the first decent night's sleep we'd had in ages.

"But we were also really angry that it had taken so long to find out what was wrong and that our doctor wasn't aware of the symptoms.

big worry

"As a mum you think the worst. You don't think that it's actually something you can control and is manageable," said Sarah.

The family visited the charity's website and discovered Lewis can be treated almost the same as any other baby, which was a relief for his big brother.

"It was a big worry for Tom when we didn't know what was wrong with Lewis.

Sarah said: "We had nine years of fertility treatment, so Tom's waited a long time for a brother or sister and it was upsetting for him when Lewis was ill."

The charity, Syncope Trust and Reflex Anoxic Seizures (STARS), offer advice and practical help to families affected by the condition and work to raise awareness for the public and medics.

Often the symptoms can be mistaken for temper tantrums, breath holding or epilepsy and it is thought some children may be receiving unnecessary medication.

The day the family found out about STARS they decided to help the charity.

On Lewis's second birthday – April 7 – Mark and 25 of his friends will be doing a sponsored sky dive.

"They've all been really fantastic. They'd been really concerned about Lewis. None of them have ever done it before.

"It started just as an idea and has really snowballed. I've really enjoyed organising it," said Sarah.

Speed Queen in Leeds have helped sponsor the group who will travel to Bridlington in a bus provided for free by Autosound, based at Dudley Hill in Bradford.

Following the dive the group will celebrate at the Golden Fleece in Birkenshaw, where they hope to raise more money.

Although they will not be charged for the room, they are still looking for help to fund a buffet.

"We just don't want any other families to wait like we did.

"It'd be great if the next family who went to the doctors could go and get the right advice so they could have a decent night's sleep without worry," Sarah said.

To find out more about STARS and the work they do visit www.stars.org.uk or call 0800 028 6362.

juliebartram@morleytoday.co.uk