Baby born with webbed fingers and toes will have life-changing surgery to ‘unfuse’ her digits in hope of allowing her to use her hands and feet normally
- Amaya John has Apert syndrome, which also left her with a protruding forehead
- Youngster has spent most of her life in intensive care, breathing through a tube
- Her mother Kylie Matthews had no idea of Amaya’s disability until she was born
A baby who was born with webbed fingers and toes is set to have life-changing surgery to unfuse her digits.
Amaya John, from Barry in Wales, has Apert syndrome, which has also left her with a protruding forehead and cleft lip.
Her mother Kylie Matthews, 31, claims she had no idea of her daughter’s disability until she was born on April 24, despite having around 50 ultrasound scans.
After ‘dying for a couple of seconds’, the youngster pulled through. She has since spent most of her life in intensive care, eating via a tube and breathing through a machine.
Amaya is awaiting plastic surgery to ‘de-web’ her fingers and toes, which Ms Matthews hopes will help her live a ‘normal’ life. It is unclear when the procedure may go ahead.
Amaya John has Apert syndrome, which caused her to be born with webbed hands and feet
The five-month-old (pictured with her grandmother Dawn) has spent most of her life in intensive care. She went home for a week but was rushed back when she struggled to breathe
Speaking of her daughter, single mother Ms Matthews said: ‘Her little personality is amazing and is starting to show, all the nurses love her.
‘She’s like a normal baby, she sticks her fingers in her mouth. She’s learning to roll over and started to smile.’
‘She’s five months old and she’s only been home with her sisters for one week.
‘I’m hoping after the surgery she’ll be able to use her hands and feet normally, but we don’t know yet.’
Ms Matthews discovered she was pregnant in July last year. Doctors later found excessive amniotic fluid was accumulating in her uterus, which has been linked to premature labour and stillbirth.
To be on the safe side, the mother-of-three had regular scans but was told everything was progressing well.
‘During my pregnancy, we were told Amaya’s head was growing fine and there was nothing wrong with her,’ she said.
‘My fluids were high towards the end of the pregnancy so I went to a scan every few days for a check up.
‘We even had a 4D scan my mum bought us for Christmas, and they said she was moving fine and everything was all good.’
Amaya’s condition also means she has to breathe via a machine and eat through a tube
Amaya’s mother Kylie Matthews (pictured together left) had no idea of her daughter’s condition until she was born on April 24. This is despite her undergoing around 50 scans while pregnant. The newborn (right) ‘died for a few seconds’ but managed to pull through
Amaya was on life support for a month after her breathing difficulties started
WHAT IS APERT SYNDROME?
Apert syndrome involves abnormal growth of the skull and the face due to early fusion of certain sutures of the skull.
Children with the condition 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.
Early surgery can relieve the pressure that builds up inside the fused skull as the brain grows.
It affects one in every 100,000 babies.
Things took a dramatic turn for the worse when Ms Matthews delivered Amaya at University Hospital of Wales (UHW) in Cardiff.
‘When she was born, the doctors pulled her up and we saw her webbed hands and feet and the shape of her head,’ Ms Matthews said.
‘She then died for a couple of seconds, so they put her in an incubator straight away. We didn’t even get to have skin-to-skin contact.’
Two days later, Amaya was diagnosed with Apert syndrome, which is thought to affect one in every 100,000 babies.
The youngster was sent home at a week old, only to be rushed back to hospital days later.
‘We had to rush her back one week later because she couldn’t breathe and she was put on life support for one month,’ Ms Matthews said.
Ms Matthews – who is also mother to Chloe, eight, and Kristal, six – lives at UHW full time with Amaya.
The youngster is awaiting plastic surgery at Birmingham Children’s Hospital. The life-changing operation is rarely performed in the UK due to Apert syndrome being so rare. The doctors in Birmingham have never carried out the operation before.
Speaking of the ordeal so far, Ms Matthews said: ‘It has been difficult. I have had to put everything aside and get on with it.’
The mother-of-three is fundraising £500 ($612) to help make ends meet after she was forced to give up her job as a care worker to look after Amaya.
‘She’ll need 24-hour care,’ Ms Matthews said. ‘It’s hard when you’ve got two other kids.’
Donate here.
The now five-month-old is awaiting plastic surgery to unfuse her webbed fingers and toes
Her sisters Chloe and Kristal (pictured together) adore Amaya, who lives in hospital
Amaya’s mother hopes the surgery will enable her to live more of a ‘normal’ life
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