Kira Yates suffers a rare condition which meant she was born with malformations of the skull, face, hands and feet.
But she has been gradually put back together during a series of 14 major operations – including surgery to have her skull smashed and reshaped.
Kira Yates, with her mother Michelle, has a rare condition dubbed ‘broken doll syndrome’. Her body is being put back together during a series of major operations – including surgery to smash and re-shape her skull
Kira, nine, suffers from Apert syndrome, has also had metal bars fitted in her neck to hold the rest of her body in place.
The condition is caused by a chromosomal defect.
It results in premature fusion of certain skull bones which prevents the skull from growing normally and affecting the shape of the head and face.
Children with Apert’s have bulging eyes that are usually wide-set and tilted down at the sides, according to the Children’s Craniofacial Association.
They may also have problems with tooth alignment due to jaw development problems, suffer from a cleft palate, and/or have webbed fingers and toes.
Kira’s mother Michelle, 47, said: ‘Kira’s bones aren’t like everyone else’s – she’s just a broken doll.
‘She’s had to be put back together like a jigsaw. It was a big shock when she was born. As soon as she arrived she was taken away from me and wrapped up.
Kira (pictured here at a year old) has Apert syndrome – a condition caused by a chromosomal defect
Children with Apert syndrome can also suffer from webbed fingers and toes. Kira had to have each of her fingers and toes separated to give her ten digits and was also born with no knuckles
‘Her head was really big at the front, her hands and feet were fused like a glove and she just had stumps for big toes.
‘She had a cleft palate and there was even a big bump sticking out at the bottom of her back.
“The doctors didn’t even know what was wrong with her – they had to get a specialist in to diagnose her.
‘It’s a miracle to think how much she has achieved considering how poorly she was as a baby.’
‘She copes very well, and much better than doctors ever thought she would.
‘But it’s hard for her – she can’t look left and right, and she has no knuckles so it can be difficult for her as a nine-year-old to do the things she wants to do.
In the first year of her life, she underwent major facial surgery and once attended 27 appointments in a month
‘She gets the mickey taken out of her a lot because of her looks, but that’s just life, and she has learned to deal with it. She really is a child that doesn’t let anything stop her.
‘Many parents give children with Apert up for adoption but we knew we had to find a way to get through it.’
Kira, from Doncaster, South Yorkshire, has a severe form of the condition, which affects one in every 100,000 babies.
Within the first year of her life, she underwent major facial surgery and once attended 27 appointments in a month.
WHAT IS APERT SYNDROME?
Apert syndrome is a condition involving abnormal growth of the skull and the face due to early fusion of certain sutures of the skull.
Children with Apert’s have bulging eyes that are usually wide-set and tilted down at the sides.
They usually have problems with teeth alignment due to the underdevelopment of the upper jaw. Some have cleft palate.
Among other anomalies, children with Apert syndrome have webbed fingers and toes.
It affects one in every 100,000 babies.
She has since had more than a dozen further procedures, including the most recent – a 14-hour operation at Liverpool’s Alder Hey Children’s Hospital to lift her sunken face.
The surgery involved inserting metal plates into Kira’s face before fitting her head with a metal frame.
This helped to bring the bones in her head forward to transform her appearance.
Her mother said: ‘She’s gone through a lot, including being rushed into surgery to have two metal bars fitted in her neck to secure her head in place so she wouldn’t become paralysed from the neck down.
‘She was in hospital six days in total and had to be put into a coma for two days after the operation – waking up to a face full of metal is a lot for a nine-year-old to take in.’
‘During this latest operation Kira had metal plates inserted into her face, which will help build it up.
‘Wires are attached to the plates and the frame, which we have to manipulate to ensure her face is developing correctly.’
Also unable to use her hands or feet, Kira had to have each of her fingers and toes separated to give her ten digits.
Professor Simon Kay, who had to travel to America to learn how to perform some of the procedures at Leeds General Infirmary, said: ‘Kira’s condition is very rare and expertise is necessarily concentrated in our highly specialist units.
Kira will wear the metal frame for the next three months and hopes to return to school in September
‘Our unit in Leeds is the only one in the UK to offer microsurgical reconstruction in these cases, which we believe greatly enhances recovery, especially when combined with excellent community support and the kind of attentive loving parents Kira has.’
Mrs Yates and husband Mark, 42, as well as their older children Ryan, 18, and Victoria, 16, have had to adapt their lives to look after Kira, who has needed a lot of care since birth.
Kira will wear the metal frame for the next three months and hopes to return to school in September.
Mrs Yates, who cares for Kira full-time, added: ‘We are seeing the changes already so there should be a big difference in the next few months.
‘It could take her classmates a while to get used to it as her appearance will change quite drastically, but the main thing Kira wants is for people to stop staring at her.
‘She asks why she is how she is, but I just tell her him upstairs wanted to make her special.
‘My broken doll is nearly fixed and I’m so proud of her.’
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