Shai’s smile launched new hope for kids
Shai Winn suffers from a rare condition that leaves her unable to eat or drink, brushing her teeth could be fatal. Her mum tells LUISA METCALFE how Shai’s courage inspired her to help other sick children
WHEN ShaiWinn celebrates her birthday, her parents lay on a magnificent cake covered in a thick layer of icing and topped with candles. She blows them out and her mum, Lindsey Bidwell, will hand out slices to the members of the family – everyone except for Shai, that is.
This isn’t cruelty on Lindsey’s part – Shai, 10, hasn’t eaten food or drunk water since she was a toddler. Instead she is fed through a tube that delivers all the nutrition she needs straight into her digestive system.
Shai looks the picture of health with her beaming smile, long curly brown hair and sparkling eyes. “Most people would say she has the most beautiful personality,” says Lindsey, 41, from Chelmsford, Essex.
Yet Shai has battled serious health problems throughout her life. Even brushing her teeth can be dangerous as she can swallow water which can go into her lungs.
After a difficult pregnancy with Shai, Lindsey – who is also mother to Reef, 20, Samuel, 16 and Lani, 12 – went into early labour, delivering her after just 31 weeks.
Weighing 3lb, Shai spent her first weeks in the neonatal unit in hospital. Once home, Lindsey became worried as her baby coughed every time she was breastfed.
Shai suffered from constant colds, chest infections and even pneumonia, baffling doctors and forcing Lindsey to give up her job as a sales manager to care for Shai full time, which had a “horrendous” financial impact on the family.
Doctors discovered aV-shaped pocket in the back of Shai’s throat and when she was 18 months old, surgeons confirmed it was a laryngeal cleft, a rare condition occurring in one in 10,000 to 20,000 live births.
“It’s where the skin between the food pipe and air pipe hasn’t closed properly, creating a hole,” explains Lindsay. It meant that food and liquid were entering Shai’s lungs, causing the infections.
Shai was offered surgery, but with the risks so high, Lindsey and her husband Richard, 45, a carpenter, decided not to go through with it. Instead Shai was given a nasogastric (NG) feeding tube.
“They placed the tube through her nose and into her tummy. It was horrific – she was on local anaesthetic and screaming.We spent three days in hospital learning how to feed her through the tube and how to test that it is in the right place,” says Lindsey.
“But afterwards there was no literature, no support, no nothing. I came away feeling like the world’s worst mum. I crumbled – that was one of the darkest days of my life.”
But the tube worked. Shai started getting
better as her body absorbed the badlyneeded nutrients and her lungs recovered.
Doctors decided to make the tube permanent, giving her a Corflo Percutaneous Endoscopic Gastrostomy (PEG), a tube that goes straight into the stomach.
However it was then discovered that Shai’s stomach wasn’t emptying properly and the feed was coming back up. Instead Shai was given a gastrostomy-jejunostomy (G-J), a feeding tube into the stomach and the small intestine.
Over the next few years her health turned around. “Shai really flourished. She had more energy and her hair has grown,” says Lindsey. She even has a name for her tube, “Piggy”.
But it hasn’t been plain sailing, Shai has been in and out of hospital with infections around her tube, which had to be re-sited.
THERE’S also a risk that Shai’s tube can be pulled out by accident. “If that happens you have to put something in the hole to keep it open – it can close within four hours and need surgery,” adds Lindsey.
“We’ve felt so isolated and lonely but I always knew I wanted to give something back.” So, inspired by Shai’s bravery, she launched the charity Shai’s Smile to help other tube-fed children, of which there are between 8,000 and 9,000 in the UK, and children with life-long illnesses.
The first event for Shai’s Smile was Shai’s Party For Heroes at Marsh Farm Animal Adventure Park in Essex. “Kids with feeding tubes in backpacks were going down slides and jumping on the bouncy castle,” marvels Lindsey. Two years on, the charity has released its first children’s book, the story of Shai’s life called Stars Can’t ShineWithout
Darkness. “Our long-term goal is to do three or four events a year for families and we desperately want to raise enough money to buy a holiday home and beach hut so we can send these families to the seaside.
“We struggled financially to go on days out and we can’t go to the beach without a hut – Shai gets cold quickly and sand can cause infections – but a beach hut is £50 a day.”
The charity has staged glitzy events such as the Starlight Balls featuring celebrities including Danny Dyer and SAS:Who Dares Wins starAnt Middleton.They also send teddy bears to comfort other sick children. (Shai is rarely without Colin, her teddy bear who has a tube in his tummy like her).
Sadly there have also been many lows along the way. “Shai is going through a bad time right now,” says Lindsey, possibly due to her premature birth, though the doctors don’t really know for sure.
“She keeps having episodes where she doesn’t know who anyone is – she won’t recognise me or my mum. She has a weakness down her left side and can’t walk far, so she needs to use a wheelchair. She also has to have a special writing board and laptop because her fingers become swollen.
“But the charity keeps her positive. When she got really down the other week, she decided to write to other children – she sent them videos and wrote handwritten messages. She sent a bear and a handwritten letter to a girl with leukaemia.That’s how she copes – she writes to other children.That’s why the charity is so important and why she’s so heavily involved.
“I don’t know what’s going to happen to Shai when she gets older.We’re hoping she’ll carry on with the charity.That’s my dream.”
For more information about Shai’s Smile and the book Stars Can’t ShineWithout Darkness, visit shaissmile.co.uk