A three-year-old girl who was born with a sealed mouth has undergone a pioneering operation in the hope she will be able to taste food and talk to her family for the first time.
Amethyst Santos, from Manila in the Philippines, has been fed through a tube since birth because her lower lip was attached to the base of her mouth, her upper and lower jawbones fused and an underdeveloped lower jaw.
Amethyst was also born with no hands and feet, but has learned to walk, play with her two older sisters – and now she can even smile.
DailyMail reports that her mother Estrellita, has spoken for the first time about her daughter’s incredible journey to recovery on Body Bizarre is on TLC, which airs on Discovery tonight.
Amethyst is currently still in hospital recovering from her second operation – reconstructive surgery on her jaw – but Estrellita said she is excited for her first taste of food.
Filmed before Amethyst’s first operation earlier this year at the Philippine Children’s Medical Centre in Quezon City,
‘Yesterday I was telling her that her mouth will be opened.
‘And she will be able to eat normal food like ice cream.
Then she clapped as if to say “yehey”.
‘We’ve been waiting for this for three years. I feel excited and nervous.’
Amethyst was born with oromandibular limb hypogenesis syndrome, a complex combination of symptoms that affects one in half a million people.
Her mother recalls:
‘During pregnancy, for almost a month I was bleeding.
They discovered at five months that she wasn’t fully formed.’
When Amethyst was born doctors realised that her mouth was closed. Estrellita said:
‘I cried and cried and asked, “Lord how can I manage?
How can I look after my child”.’
Despite her extreme disability, Amethyst’s nurturing parents and two older sisters have helped her flourish and although she cannot talk, Amethyst has developed Into a mobile and happy young girl.
‘I love all my children but my love for her is different. If I could I would give her everything she wants. I’d give it.
That’s how much I love her.’
Days after Amethyst was born she was referred to Dr Taps Gurango, head of plastic surgery at Philippine Children’s Medical Center.
‘When we first saw her our first concern was the nutrition, so she had to be referred to a paediatrician and fed through a tube going into the nose.
‘Since her heart was strong we know she would survive.
As long as you can feed these babies and nurture them they will live. Amethyst is from a very religious family and they realise this baby has changed their lives and they are happy. And she is a happy kid.’
Amethyst’s father Rolando was taught to feed his daughter using a nasal gastric tube and as she grew, through a tiny opening that appeared in her mouth.
It took three years until Dr Gurango was satisfied that Amethyst’s little body was strong enough to undergo the complicated operation needed to separate her jawbone and detach her lip from the base of her mouth.
Doctor’s predicted a bloody procedure and as the case was so unusual they had little guidance from medical journals to help them.
After eight hours in surgery, Amethyst’s mouth was partially open, but her little body was racked with pain.
‘After the operation, when she came round she could not talk, she could not complain, but we could tell she
was in pain.’
It was a tough time for Amethyst and her family as she slowly recovered – but a medical success.
‘Amethyst mouth was opened but because her jawbone was so fragile, it was still impossible for her to eat unaided.’
A few month later Amethyst had a second operation to reconstruct her jawbone.
‘First time she had the operation I was worried but then I realised there was no need. I saw that she is a survivor.’
But when Amethyst was put to sleep for Dr Gurango to operate, her temperature started to rise and the operation had to be stopped. Thankfully after 24 hours the temperature had returned to normal and Dr Gurango felt it was safe to start the surgery again.
It’s been two months since the operation and Amethyst is on her way to recovery. She is out of intensive care but still in hospital.
‘What I really hope is for her mouth to be fully opened and to hear her speak clearly.
‘But in order for that to happen Amethyst will need another operation to replace her teeth.’
It may be a difficult path ahead before she can return home to her family, but the three-year old has shown she is a survivor despite all odds. And there is still hope that she will one day experience the taste of ice cream.