A mother has told how her baby holds her breath up to 15 times a day and has spasms that can be triggered by the slightest movement such as a knock on the door.
Sophie Giblin’s ten-month-old daughter Alayna suffers from an undiagnosed brain condition which means she has regular spasms that can be brought on by almost anything – including teething and nappy changes.
Her mum described how little Alayna’s diaphragm spasms, causing her full body to stiffen so she can’t breathe – until finally she takes a big breath and is released.
The spasms – which started when she was three months old but continue today – can last "anything from 10 seconds to a minute, and happen five to 15 times a day," Sophie says.
Alayna’s condition means her brain doesn’t tell her to breathe, so she has to have a non invasive oxygen mask overnight and during the day she uses nasal cannulas, her mum explained.
The tot sadly deteriorated when in October she battled sepsis, leaving her terrified mum and dad Jezz Bateson, 26, fearing for her life.
But their ‘one in a million’ girl pulled through and inspires her parents day by day with her strength.
"At the beginning it was horrible to watch because she turns blue at the same time," 25-year-old Sophie from Withernsea, Yorkshire, told Mirror.co.uk, speaking about Alayna’s spasms.
"It frightens other people but now we stay calm because we know she will come back out of it. We call her holding her breath ‘having a paddy’.
"To get her out of it we put her dummy in and tap it because she loves her dummy – and that way she has to breathe out of her nose or we turn her oxygen up.
"All we want is for her to be comfortable and happy."
Speaking of when Alayna contracted sepsis, Sophie told: "I just cried and cried and didn’t know what to do or what to say. It all happened so quickly, we didn’t know how to process it.
"It was awful but we clung to each breath she took.
"When she went into septic shock we were told to expect the worst. We were terrified we would lose her.
"We just kept being told ‘she is a sick little girl’ and ‘we don’t know what the next 24 hours will hold’.
"She was in such a critical condition.
"We have been through so much with her – and to have something that was nothing to do with her condition was horrible.
"We always thought it would be her life-threatening condition that would break her down. It was so hard to handle. We didn’t know what we could tell our sons.
"I really didn’t think she would pull through it because of her condition but Jezz said ‘she’s strong, she can do this’ and he helped pull me through."
Sophie added: "She is honestly one in a million. Not only is she coping with all of her conditions she has just recently battled with sepsis and nearly lost her life but has come out the other side.
"She is our inspiration."
Sophie said no problems were detected during her pregnancy.
She’d noticed after Alayna was born that she would hold her breath temporarily when she was having nappy changes or when she was hungry, but Sophie says they were told it wasn’t concerning at that stage.
But a fortnight later, Alayna seemed to ‘change colour’.
"Two weeks after she was born she turned a grey-blue colour," Sophie said.
"We were just at home doing our day to day routine. She seemed fine, but just a different colour. People came round and commented on it.
"We took her to the GP who sent us to hospital as a precaution. There, she was given oxygen, but nobody knew anything."
Alayna was taken to A&E at the Hull Royal Infirmary where she had an ECG, MRI and CT scan which her mum says came back clear.
But Sophie was told that Alayna’s carbon dioxide levels had increased dramatically over the two weeks from holding her breath and not letting enough out.
So she was put on oxygen until her condition stabilised.
Then aged 13 weeks, Alayna was transferred to the Leeds Children’s Hospital in May for further tests which showed she had too much white matter on her brain.
Sophie was told her daughter’s brain was still like a newborn’s.
"When she was born, for two weeks she was a perfect baby," she said.
"It was hard to come to terms with the fact she is not going to be able to do certain things.
"Doctors said they didn’t know if she would progress or if she would stay like that (like a newborn) – it was devastating."
At eight months old, Sophie said her baby had developed as much as a three month old.
Medics had said at the 13 week scan that she had a life limiting brain condition – but Sophie says they still don’t have an exact diagnosis.
"We still don’t know what she’s going to be able to do and if she is going to be able to do anything," she told.
Alayna also has hypotonia, commonly known as floppy baby syndrome, which is a state of low muscle tone.
She is on "quite a lot of medication to try and soothe her" and can only eat pureed food.
Sophie says they don’t know what’s going to happen in the future and try to take each day as it comes, remaining as "normal" as possible for their sons Harry, five, and George, three.
Alayna spent the first six months of her life in hospital – between Hull and Leeds – before the family were finally able to take her home.
But her shock battle with sepsis in October sadly made her condition worsen.
Sophie had become concerned after Alayna was asleep for "too long" and so she took her to hospital to check everything was OK.
But the mum says "a water infection turned into septic shock and within a day her whole body was shutting down.
"Everything went dramatically downhill. Everyone thought that was it for her."
Alayna was put on a lot of medication, sedated, incubated and put on a ventilator, Sophie said.
"We were told she was a very, very poorly child," she continued.
"But each day she seemed to get better. She was trying her hardest and has been doing brilliantly.
"Everyone is shocked with how far she has come already – but it was frightening.
"Jezz is the strong one and we all followed him and tried to stay strong.
"She looked so small attached to everything (tubes) at every angle. All of us broke down.
"But within a few days she started waking up and slowly but surely coming back to her normal self."
Alayna eventually came off the ventilator in place for a non-invasive one.
Then after leaving hospital, Alayna spent two weeks at The Martin house children’s hospice – but managed to battle through and has been home since the end of November.
Alayna even spent Christmas at home surrounded by family, and her mum says the family just takes each day as it comes.
"We still don’t have a diagnosis for her and we don’t know how long we have got with her," Sophie said.
"It’s horrible to even think about and to even say the words but we have to enjoy each minute we have with her, and we have to show our boys we can be strong together as a family.
"We love her and will do whatever we can for her. "
Sophie said since her daughter was born, The Sick Children’s Trust charity has been "a lifeline" for her family, helping them through "the dark days" and giving them somewhere to stay while Alayna was in hospital.
The Sick Children’s Trust provides free ‘Home from Home’ accommodation supporting families with seriously ill children in hospital.
For further information about The Sick Children’s Trust, please visit http://www.sickchildrenstrust.org/
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