SOUTHAMPTON mum Stacy Saxby has revealed how her baby daughter’s skull had to be broken into pieces “like a jigsaw puzzle” in order for her to live a healthy and normal life.
Little Chloe Saxby is now a happy, intelligent and beautiful eight-year-old but when she was born with a cone shaped head doctors feared she would not develop normally without the gruelling operation.
Chloe was born with a condition called craniosynostosis which meant she did not have a soft spot and her head was an abnormal shape.
Stacy, who was a first-time mum said she did not know what was normal and had no idea there was a problem with her newborn baby until she was a day old.
“The scans during my pregnancy were all normal and it was only when she had her 24 hour check up that the health visitor called the paediatrician because she couldn’t feel a soft spot on the top of her head. Her bones had fused over it. She was also born with a cone shaped head which didn’t change.”
It was quite a shock for Stacy, who works part time as an income officer for the Housing Association, and her husband Dan who is a railway welder.
The family, who live in Totton, were referred to Great Ormond Street Hospital as craniosynostosis is a rare condition – and even more rare in girls.
Little is known about the condition or why it occurs.
Stacy was humbled by what she saw at Great Ormond Street where all the children in the waiting room had the same condition.
“We went there and saw all the other children who looked very different and disfigured. The doctors said to us we don’t know much about it and whether the brain will be affected by it or not.
“Some children there had big scars across their heads.
“They ranged in age from toddlers to about eight and were mainly boys.
“As we walked into the waiting room parents seemed to be looking at us as if to say ‘what’s the problem’ as compared to them Chloe looked ok.
We decided to go ahead with the operation because we didn’t know what would happen if we didn’t.
I was bullied at school – because I was clever, and I didn’t want her to go through anything like that for being different.
“Seven days after her first birthday we went to hospital and she had a six-hour operation, which was the worst day of my life.”
Even after the operation it was a waiting game to see if Chloe would be ok. She spent three nights in hospital and spent a year under the care of Great Ormond Street.
Stacy explained: “We waited a year to see if she was doing everything as she should.
“She’s eight and a half now and hitting all her targets and is absolutely beautiful.
“We don’t know if we had left it if it would be any different.
“She stayed in hospital for three nights and had two blood transfusions.
“They broke her skull in quite a few places and described it to us as being like a jigsaw so they could remould her skull and restore it to a proper shape.
“After birth Chloe’s skull had just remained this odd shape. It was really scary.”
Being a baby, Chloe was left with no memory of the harrowing operation but her parents have told her what happened.
“We came to the conclusion we would tell her about it when she was older.
“She has a scar from ear to ear like an Alice band so we had to describe to her why she had this operation.
“Fortunately she doesn’t remember it as she was only one year old and that’s why we did it then as we were worried if we left it it could affect her school work and it might get worse.
“It all healed well despite having to be redressed after she had a bleed, and she was discharged from Great Ormond Street a year later.
“Doctors don’t know why it happened but she was engaged for quite a long time while I was pregnant.
“With my son Alfie who is five everything was fine.
“Chloe is now eight and is a gorgeous and intelligent young lady!
“Every year since my daughter’s operation, I have vowed to give something back to this amazing hospital.
“Her operation was over five hours, so I can only begin to imagine how much this cost, along with the three-night stay in hospital, two blood transfusions and the recovery.”
Stacy also revealed how her nine-year-old brother had to undergo surgery for a brain tumour and sadly died when she was only six.
Even though she has no real memories of this time 25 years ago she said she has had to undergo therapy as an adult to deal with the impact it had on her.
She is so grateful for the care he received on the Piam Brown Children’s ward at Southampton General Hospital as well as the care Chloe received at Great Ormond Street that she is organising a charity fashion show to raise funds for both hospitals.
She has previously held auctions, football matches, ladies’ nights and coffee mornings as her way of saying “thank you”.
So far she has raised around £5,000 which has been split between the two charities.
This year she is holding her first fashion show in conjunction with Travelling Trends who will supply the clothes.
This will be held on Saturday May 13 at Calmore Community Centre in Totton.
Doors open at 7pm and the show starts at 8pm.
There will be numerous beauty stalls for people to browse and a bar will be open.
There will also be a raffle on the night and Stacy has already collected over 20 prizes ranging from beauty treatments to sweets, wine and days out.
Entry to the fashion show will cost £6.50 if bought in advance and will include a glass of bubbly!
For those turning up on the night, tickets will cost £7.50.
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