Little Nate was born with a bevy of health problems including an underdeveloped skull, breathing difficulties, a hole in his heart and an extra X chromosome
A LITTLE boy cruelly dubbed an ‘alien’ by his classmates suffers from a catalogue of conditions that has left doctors baffled.
Four-year-old Nate Williams was diagnosed with Klinefelter syndrome, in the womb.
The condition means he was born with an extra X chromosome.
But he also has a misshapen head and fingers, which medics do not believe is linked to his condition.
His head was so misshapen in the womb that doctors thought he suffered with a more serious genetic condition called Edward’s Syndrome and his parents, Jo and Andy Williams, were offered a termination because of the severity of the condition.
But their relief at the news he did not suffer the condition was short lived when Nate was born with a bevy of health problems including an underdeveloped skull, breathing difficulties and a hole in his heart.
Despite the challenges life has thrown at little Nate, mum Jo, 45, says he is the most charismatic kid in his class who just “gets on with life”.
Jo, a nurse from Burntwood, Staffordshire, said: “Nate is at the top of the class and is such character.
“He’s such a happy kid, who just gets on with life and never complains.”
Neighbours as children, Nate’s dad, lorry driver Andy, 32, and Jo got together five years ago, after their previous relationships broke down almost 10 years ago.
He’s such a happy kid, who just gets on with life and never complains.
Jo Williams – Nate’s Mum
But tragically for the pair, they endured five miscarriages, before the arrival of little Nate in August 2012.
And Jo’s pregnancy wasn’t an easy one.
She said: “I was so happy we didn’t lose him early on, but when we got to the 20-week scan at the Birmingham Women’s Hospital, that’s when things started to go wrong.
“It became clear I was going to have a traumatic pregnancy.”
Doctors noticed the shape of the baby’s head wasn’t normal and wanted to test for Edwards’ Syndrome – a serious genetic condition, where the survival rate is very low.
Andy and Jo were offered a termination because of the severity of Edwards’ Syndrome, something Jo and Andy were adamant they didn’t want.
Jo said: “We’d already got so attached to our baby, there was no way we were giving him up.”
At 22 weeks, Jo had an amniocentesis test to check if her baby had the condition by testing a small sample of cells from the amniotic fluid, which surrounds the foetus in the womb.
To their relief it showed their baby didn’t have the deadly condition but he did have Klinefelter syndrome, a more common genetic disorder.
A lot less serious than Edwards’ Syndrome, Klinefelter can lead to boys producing less testosterone than usual.
The family were told it wasn’t life threatening but his learning would be delayed and he would need testosterone injections before puberty.
For the rest of her pregnancy, Jo was deemed-high risk, and needed a scan every two weeks.
At 34 weeks’ pregnant, Jo was induced at Burton Hospital, after doctors discovered she didn’t have enough amniotic fluid, putting the baby at high risk.
Not having enough amniotic fluid can lead to infections, and because Nate was so small, doctors needed to act quickly.
We don’t know what Nate’s prognosis is, so we want to make as many memories as we can with him, to make as much of his life as we can.
Jo Williams – Nate’s Mum
But two days into labour, and one centimetre dilated, she was given an emergency caesarean because baby Nate was becoming more distressed in the womb.
Jo said: “I was just so desperately hoping our baby was going to be okay.
“We didn’t know what to expect. Doctors thought that he might not make.
“They’d discovered a small hole in his heart at the 20 week scan, so were worried it might cause more complications the longer he was in the womb.”
But when Nate was finally delivered, weighing a tiny 2lb 6oz, it was his little cry which gave Jo and Andy hope.
Jo recalled: “He let out a cry and then we both started crying too.
“He looked so well, even though he was so small.
“But we were still very worried he wouldn’t make it through the first night. Because he was so tiny, he was a high risk already.
“He was wrapped in a little blanket, with a hat on. He looked perfect.
“So tiny, but with his little nose and mouth he just looked like a perfect bundle to us.
“We gave him a kiss and he looked so peaceful and content.”
Doctors quickly took Nate to the neonatal unit, giving Jo time to think.
As she replayed Nate’s birth in her mind, she started to fear something wasn’t right with her newborn.
She said: “His fingers and the shape of his heard didn’t look quite right.
“Andy didn’t notice anything, but I think it must have been a mother’s instinct. I was just desperate to see him.”
Sadly, her instincts were right and doctors discovered a catalogue of things wrong with little Nate, including an undeveloped skull, cataracts, breathing difficulties and the hole in his heart.
Jo was sent home after two days, but returned to the hospital every day to be with her sick boy, who was kept in for eight weeks.
We’d already got so attached to our baby, there was no way we were giving him up.
Jo Williams – Nate’s Mum
He was finally allowed home at eight weeks old, but was rushed back into hospital with bronchiolitis, a lung infection just two days later.
After six weeks in hospital again, doctors said he would need to be on oxygen constantly, because of the infection as well as his heart complications, pulmonary hypertension, a raised blood pressure within the pulmonary arteries, and atrial septal defect – the hole in his heart.
Now four, he is still fed through a pump because he struggles to swallow.
But medics are still baffled as to why Nate, who attends a special school for children with disabilities, looks so different to other children, as they do not believe his appearance is related to Klinefelter.
Jo said: “Some children have called him an alien, but teachers sat them down and explained he is different to others
“He can’t walk on his own, run, or climb like other little boys, but he’s determined to do what all the other kids do, and so are we.
“We don’t know what Nate’s prognosis is, so we want to make as many memories as we can with him, to make as much of his life as we can.”
The family have been unable to take Nate on a foreign holiday, because of the cost to insure him.
So Jo set up a crowdfunding page to raise £2,000 to take him and his siblings – Jo’s children, from a previous relationship, Skye, 22 and Niall, 18, and Andy’s daughter Lauren, 9 – on a cruise around the Canary Islands.
They have now raised almost £1,500.
Jo said: “It would mean so much to us to take Nate on a family holiday. He’s been through so much and deserves something that all other kids get.”
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