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Cheyanne: The girl who can't cry
SHE may be 13 months old, but city toddler Cheyanne Ferreday doesn't cry, and has yet to say her first word.
SHE may be 13 months old, but city toddler Cheyanne Ferreday doesn't cry, and has yet to say her first word.She doesn't make a sound when she sleeps, and her parents have to watch over her on a baby monitor camera.
And in place of cute gurgles and baby talk, there is silence. That's because the smiley tot had a life-or-death emergency tracheotomy at 10 weeks after she started turning blue and gasping for air. She is believed to be the second youngest in the country to have gone through the major operation.
It saved the little girl, who her family have nicknamed Tinkerbell after the fun-loving and mischievous fairy who never speaks in Peter Pan, but it means air can't pass through her voice box when the cuff connected to it is inflated.
Heartbreakingly, for her parents Kevin (34) and Jo (37) Ferreday of Howland, Orton Goldhay, Peterborough, they may never hear her call them "mum and dad".
That fills them with sadness, but they say it is a small price to pay if it means they get a chance to see Cheyanne grow up.
The family's world was turned upside down when Cheyanne was just five weeks old.
They were at their GP's surgery, when she started wheezing in the waiting room.
She was rushed to Peterborough District Hospital where she was diagnosed with subglottal stenosis – a rare condition which leads to a narrowing of the airway below the vocal cords.
She was referred to Leicester Royal Infirmary where a camera was lowered down her throat to inspect the problem.
She was sent home with steroids to control her condition, but on May 24 last year, things took a turn for the worse. Cheyanne had to be rushed to hospital by ambulance after she couldn't breathe, and was later transferred back to Leicester.
There, she was put on a ventilator and medics told her devastated parents she would die if she didn't have the tracheotomy.
It is a delicate and invasive procedure which carries huge risks in young children, but there was no choice. After the two-hour surgery, doctors prepared Jo and Kevin for the worst.
Jo said: "The options were narrowing all the time, because the steroids hadn't worked. If she hadn't had it done, she wouldn't be here now.
"She couldn't get enough oxygen and was struggling to breathe. They first said she wouldn't make it through the night. Then it was the week, the month, and six months. Then it was her first birthday, and the doctors said she had proved them wrong.
"She's not out of the woods yet, but the statistics are better."
Kevin said: "The surgeon said Cheyanne was the youngest child he had done the operation on. There are a lot of risks, in the first few months, a lot of children pass away, but there were no other options."
As well as the condition, Cheyanne also has "spider-web"-like structures in her voice box, which have to be removed regularly. Now there could be a new battle for her to fight after specialists recently found a growth on her voice box, which could be cancerous.
On June 19, the family will travel to London to see specialists at the Great Ormond Street Hospital. But they don’t know what the future holds.
The couple, who also have three other children – Hannah (12), Peter (10) and Samantha (8) – are full-time carers for Cheyanne, and have to think about everything other parents take for granted.
Jo said: “When she has a runny nose, we have to get a pump, then a catheter into her windpipe, remove the bunged up bit and take the catheter out. We call it hoovering! We also call the catheter ‘Cathy’. She can only eat yoghurt. All other foods have to be blended.
“Even putting her clothes on is difficult and we have to buy V-neck tops.”
Kevin said: “She can’t have a shower and when she has a bath, we have to be careful water doesn’t go down there because that would be the kiss of death.
“We have to keep a camera on her when she sleeps, because there’s no sound when she’s breathing. She can’t speak at all but if she has a speech valve fitted, she may be able to speak one day, but we don’t know when we will hear her first word. I haven’t even heard her cry.”
Their lives revolve around hospital appointments in Peterborough and Great Ormond Street, while trying to keep life for the rest of their family as normal as possible.
But the whole family is agreed on the fact that Cheyanne lights up their lives.
Jo said: “She’s always got a smile on her face, and she’s just learned to crawl.”
Kevin added: “She has learned a few words in baby sign language.
“She gives us the run around, but with that smile, we would do anything for her.
“We just get on with it. It was hard at first but we have a great support team of community nurses. We also have the best team at the hospital who give us advice.
“More and more children are now having tracheotomies. Parents think it’s the end of the world but we want to tell them that you can’t let it take over your life.
“It is life-threatening and Cheyanne was at death’s door, but 13 months on, look at her now.”
Big brother is busy raising cash for ward
BABY Cheyanne’s big brother Peter showed just how much she meant to him by getting his whole school to raise money for Peterborough District Hospital’s Amazon ward, where Cheyanne has spent most of her life.
He hopes staff will buy more toys for babies who are being cared for there, and he wanted to thank the nurses for all their support.
Speaking after a moving ceremony at Southfields Junior School in Stanground, where his son handed over a cheque for 75 to staff from the ward, Peter’s dad, Kevin said: “The Amazon ward has been fantastic and has given us lots of support. Staff explain everything so we don’t worry.
“Peter wanted to give something back. Sometimes, a card isn’t enough. How can you say ‘thank you for saving my daughter’s life?’”
“We also wanted to say thank you to Heather Dawson, the school’s welfare officer.”
Peter said: “I just wanted to say thank you to the hospital. Cheyanne is my baby sister. She’s a little bit mad, and we call her Tinkerbell.
“But, she was very ill and had a tracheotomy to help her breathe and I wanted to do something to help raise money to buy medical equipment and toys for babies who have to be in hospital for a long time.”
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Saturday 11 February 2012
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