06 Jun BRAVE BOY HAS HAD 11 OPERATIONS – WITH MORE TO COME
SMILING Sam Brown has defied the odds since his birth when medics gave him little chance of survival.
Born with a rare condition, the five-year-old has already endured 11 operations and he faces many more to come.
Yet, despite all his problems, he’s always happy – and he even loves hospitals, says mam Joanne.
After all, the staff there have been part of Sam’s life ever since he was born with arthrogiposis, a condition which contracts the muscles and tendons.
Joanne, 40, and husband Tom, 46, a contracts manager, only received the formal diagnosis last Christmas but problems had been picked up during the pregnancy.
A 20-week scan revealed their baby’s legs were contracted, pulled up tight up against his bottom; the tops of his feet touched his shin; his arms were bent and his hands contracted in on themselves, the thumbs pulled across his palms.
On top of that, the couple, from Preston Grange, in North Shields, received an even more shocking prognosis.
“They said he was not viable for life,” recalls Joanne, who is also mam to Dale, 24, and daughters Imogen, aged six, and three-year-old Emily.
But the couple proved they had plenty fighting spirit.
“It was only around 28 weeks that they stopped telling me to have a termination, because we wouldn’t,” said Joanne.
“We had a cardiologist look at this heart in the womb and an MRI scan to look at his brain and they said his head and heart were fine.
“We had to make a decision and we said if his head and heart are fine, we can deal with anything else.”
She added: “When he was first born, they said he was not breathing properly. He had no chin; it was tiny and came to a point and it meant his tongue was right back and was cutting off his own airways.”
Intubation, fitting a tube to help him breathe, did not work as it would not stay in place and medical staff told them again that Sam would not survive.
“Then they came back 10 minutes later and said he was breathing by himself,” said Joanne.
And that was first proof of Sam’s own fighting spirit. To everybody’s delight, he continued to prove the doctors wrong despite having one of the rarest forms of arthrogiposis.
“It affects every single cell in his body; everything is slightly off,” said Joanne, who works as a receptionist at The Parks sports centre in North Shields.
“They said he couldn’t walk because his hips are not in place but he’s had an operation. He has an abnormal bowel and a collapsed lung but they’ve been sorted.
“Whenever they say he can’t, he just does things anyway. He walks with a walking frame – he’s just determined to do it.
“If I say ‘I don’t think you can do that’ he says: ‘I will!’ It’s absolutely fantastic for his disability – not so much for discipline.”
Because Sam’s condition affects every part of his body, he was under 15 different consultants at the RVI.
When, nine months ago, he was finally discharged from the respiratory department, with a ventilator to use at home at night, he went through a stage of sleep apnoea, when he would stop breathing and they had to be even more vigilant.
Sam’s 11 operations to date have included ones to loosen tendons in his feet and to rotate his thumbs into the right position. But even before the surgery to his hands, he was managing to pick things up.
He attends the same school as sister Imogen where “staff say his can-do attitude is fantastic”, said Joanne.
Following foot surgery in January, the second of this year’s operations will involve removing webbing on the fingers of his left hand, to be followed next year by his right hand.
Joanne said: “We do daily physio and he also sees the physio weekly to work on his muscles and try and keep on top of it.”
But every time his bones grow, the tendons and muscles tighten up again and Sam will need surgery until he stops growing.
The specialists, and their North Tyneside-based physio and occupational therapist, have become “like a massive extended family,” says Joanne.
“Sam loves going to hospital and he loves the out-patient appointments. He’s always smiling; nothing affects him.”
And The Chronicle’s Sunshine Fund is hoping to make him smile even more, by raising money to buy him an all-terrain wheelchair through this June’s Go Bananas appeal.
The specialist model, which costs just over £3,100, would enable him to enjoy days out on the beach with his sisters, and more of them as the family’s weekly hospital appointments have become less frequent.
The Go Bananas appeal 2016 aims to fund specialist equipment for 10 local disabled children.
Here’s how to donate:
Call in person at The Chronicle office, Groat Market, Newcastle, NE1 1ED.
• Write a cheque made payable to The Chronicle Sunshine Fund or donate by card: call 0191 201 6289 Monday to Friday, 9am-5.30pm
• Text GBSF16 £3 to 70070 #GOBANANAS
• Visit justgiving Sunshine Fund GoBananas 2016