Fighting spirit of boy who's had TEN heart ops Fighting heart ops; EXCLUSIVE At one point he was left blind and brain-damaged, but now Lewis plays football and does martial arts 'He walked into the operating theatre, but came out like a new-born baby' Sponsored by Sunday Mercury WonderKids Legal & General heart 100.7.
WHEN Midland mum Sharon Moult took her son to see a doctor, she was told he had nothing more than a common cold.
Medics missed the terrible truth: the tiny tot had a huge hole in his heart.
It was only because of Sharon's insistence on a second opinion that the potential killer condition was discovered.
Since then, Lewis Moult has undergone a staggering TEN heart operations in 10 years.
He had to have a pacemaker fitted when he was just six years old. At one stage open heart surgery left him temporarily blind and brain-damaged. He had to be treated for meningitis.
He will need more surgery and hospital treatment for the rest of his life.
But such is Lewis's fighting spirit that he has battled through everything fate has conspired to throw at him. Today, he goes to mainstream school, plays football and loves martial arts.
Social care assessor Sharon, 45, had enjoyed a normal pregnancy, and was surprised when Lewis's health started deteriorating when he was just six weeks old.
"I knew something wasn't right," she says. "He didn't feed well. He was constantly sweating and wasn't putting weight on.
"The doctors treated him for a common cold, but we went for a second opinion at Birmingham Children's Hospital - and there we were told he had a large hole in his heart.
"I was shocked because I thought heart problems were something only old people suffered with.
"They put him on medication while we went home to have him Christened," says Sharon, who separated from her husband Nick six months ago. "Then he went back in for eight hours of open heart surgery.
"I didn't move from the theatre door."
Surgeons discovered Lewis had been born with pulmonary atresia - a rare condition which causes a severe narrowing or complete blockage of the valves connecting the left and right sides of the heart.
"Nothing can prepare you for seeing your child in intensive care," says Sharon.
"They hadn't been able to close his chest because he was so swollen. There was a sticker on his cot saying 'open chest'.
"And they couldn't close the hole in his heart because his heart was so used to working that way that it would have caused him further problems."
In time, Lewis was taken to a hospital ward - but then had to be rushed back into intensive care. He needed further open heart surgery to remove a blockage.
"He was just seven weeks old, and weighed around 8 1/2 lbs," recalls Sharon.
"He looked so tiny and helpless with a bandage across him and tubes coming out of every part of his body."
Lewis had another operation at six months old, and had to be fed by a tube.
His mum gave him bottles of milk regularly but found he was often too tired to finish them.
"As Lewis was my first baby, I just coped and got on with it. I didn't know any different," says Sharon,who gave up a career as a dental nurse to care for her son.
But, worse was to come.
When Lewis was 18 months old he had another big open heart operation - and things went wrong.
"He was in theatre for nearly 12 hours," remembers Sharon.
"I had been waiting with a family who were going in after Lewis because I knew once the doctors came to collect them, Lewis would be back in intensive care.
"We waited and waited, then eventually the surgeon came to tell them their surgery had been cancelled because they had a critically ill boy in theatre. I knew that boy was Lewis.
"Strangely, when I did finally see my son Hin intensive care, he looked healthy and pink for the first time in his life. Yet all around me were doctors who started telling me what had gone wrong."
The surgeons had struggled to restart Lewis's heart after the operation and had fitted him with a temporary external pacemaker.
Both his lungs had collapsed and had been drained.
Over the course of the next few days, he caught an infection which meant he started having seizures. He was treated for meningitis, and lost his eyesight.
Worst of all, he suffered bleeding to the brain, which led to damage.
"He had managed to walk into the operating theatre, but came out like a newborn baby," says Sharon.
"Before, he'd been saying 'mummy' and 'daddy' but he lost all of that.
"We really didn't think he'd get through it. It had gone from his heart to his lungs, to kidney failure and to brain damage."
But still little Lewis refused to give up.
After months in hospital, the Moults were finally able to bring him home, albeit with a lot of monitors, oxygen pumps and medication.
Eventually, his sight returned. And, incredibly, within 18 months, he amazed everyone by starting to walk and talk again - despite doctors warning that this might never happen.
"I was so excited when he started walking," says Sharon. "I called his regular GP, Dr Field, straight away because he'd always been so supportive. Everybody at the surgery was so excited.
"The receptionist arranged for Lewis to surprise Dr Field by walking into the doctor's retirement party and presenting his leaving present. Dr Field cried when he saw him. It was wonderful for everyone to see."
At four years old, it was time for Lewis to have another eight-hour operation, having had several keyhole operations in between.
"I was dreading it because I wondered if he was more at risk of neurological problems now," says Sharon.
"When I saw him in intensive care afterwards, he was crying. He was more aware of what was going on by this stage.
"We had to lip-read because you can't hear sound through the ventilator. He turned to me and said: 'I love you more than the spiders.' "The nurses panicked because they thought he was hallucinating, but I was overjoyed because this was our little saying.
We said it to each other because there were so many spiders in the world. I said: 'Don't worry, he's absolutely fine!'"
Sharon, who lives in Swadlincote, Derbyshire, had her daughter Katie when Lewis was five years old.
"I was nervous when I had her," she admits.
"I'd said I'd never have any more children in case Lewis' condition was genetic.
But a blood test showed it shouldn't be, so we went ahead."
Katie suffered with sleep apnea and had to have her adenoids and tonsils out.
"People asked me howI was coping with that," says Sharon. "But it was nothing compared to open heart operations.
"At one point, Lewis asked me when Katie was going to have her pacemaker fitted because he thought everyone had one! He wanted to know why she had no scars."
Lewis had his next open heart surgery when he was six years old.
The operation was to give him a new pulmonary artery and valve because the old one was leaking. It went well, but doctors discovered that his heart was skipping beats.
"We were due to go on holiday to Wales so we carried on," says Lewis's mum. "But three days into the holiday, we were called back by doctors who said he needed to have a permanent pacemaker fitted.
"He was quite angry because he'd reached the age where he was starting to ask: 'Why's this happening?"
When Lewis sleeps or rests his heart rate drops to just 30 beats per minute. An average child's heart rate is 90 beats per minute. The pacemaker needed to work for his heart when he was resting.
"When he hasn't got a shirt on you can just about see a little machine in his chest," says Sharon. "He's getting to the age now where he's conscious both of this and his scars. I tell him he should be proud of it - and that it makes him look hard."
Lewis's pacemaker does mean that he and the family have to be careful about where he goes and what he does.
But that hasn't stopped him taking up Tae Kwon Do, the high-kicking martial arts sport.
"He can't use an electric toothbrush, hold a mobile phone on the wrong side of his body, stand between security bleepers in shops for too long, be near the speakers at discos or go on the dodgems at fairgrounds or theme parks," says Sharon.
"All of these things could make his pacemaker go too fast or too slow.
"At airports, we have to ask staff to turn off the security gates for him to go through.
"One birthday, all the toys he was bought were unsuitable, it was such a shame. He couldn't use a Wii when they first came out, but fortunately he can now.
"Doctors told him he would never be able to take part in sport - that just made him determined that he would."
Lewis knows he will have to have another operation in a year or two because he has another leak in his heart.
"He's a typical cheeky 10 year-old," smiles Sharon. "He plays football with his friends but knows he has to sit out some of the time when he gets tired. He likes swimming, too.
"And he's started Tae Kwon Do which really improves his balance, has helped him make new friends and boosted his confidence. He loves it.
"He has occupational therapy, speech therapy and physio. He has a great support team which enables him to go to mainstream school.
"I'm so proud of him. He takes everything in his stride and really lives life to the full."
To mark Lewis's incredible courage, we've made him a Sunday Mercury Wonderkid.
Garry Skelton, Marketing Director at Legal & General's general insurance business based in Birmingham, said: "Lewis has shown amazing fighting spirit, bouncing back from an incredible ten heart operations.
"It's no wonder his family are so proud of him. We look forward to welcoming him and his family to our summer party at Drayton Manor Theme Park in the summer."
If you know a Wonderkid, write to firstname.lastname@example.org
KID COURAGE: Lewis Moult with mum Sharon and sister Katie, and below, in Tae Kwon Do action
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|Publication:||Sunday Mercury (Birmingham, England)|
|Date:||Mar 15, 2009|
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