Baby born with rare condition will be on ventilator for life and never smile
A baby born with a rare condition will be on a ventilator for life, his parents have been told – and will never smile.
Teddy Wood has Moebius syndrome, a rare neurological disorder which causes paralysis of the muscles in the face and head.
It affects just 200 people across the whole of Britain and means the young boy will be in and out of intensive care units for the next year.
Teddy’s parents, from Blackpool, are putting on a brave faces but say the experience has turned their lives upside down.
Dad Carl Wood, 32, said: “It’s the little things that are quite upsetting, like not seeing him smile or do the little yawns babies do.
“He’s the cutest little baby, I don’t know how to say that the condition has affected him because he’s always had it.
“That’s just how we see Teddy. Every now and again we think we see him smiling but obviously he can’t smile.
“But it’s like he’s trying to, he can open his mouth a little bit and he moves his eyes.
“That’s how we can see that he’s happy about something, we can see it in his eyes.”
Mum Amber Nuttall was told throughout her pregnancy that their may be complications with Teddy’s birth.
Early scans showed that their was an abnormal amount of fluid on the back of the baby’s neck and he was scanned for Down’s syndrome and other conditions.
Carl said: “We never thought about terminating the pregnancy, we always thought that whatever was wrong we would deal with it.
“It’s not something we even considered during the pregnancy.”
The couple continued to have regular checks every two weeks – and Carl said it felt as though things were getting worse.
The couple were told Teddy’s mobility in the womb was minimal and doctors claimed that he was likely to be born with clubbed feet.
Nurses were told to expect the baby to be born with severe problems with the likelihood that he wouldn’t survive when Amber went into hospital for the birth.
Carl said: “We were both terrified that he would die, we were told that might be the case.
“But I just thought doctors would tell everyone that if their were signs during pregnancy of a severe disability.”
On November 23, after a planned cesarean, Teddy was born.
Immediately he was whisked away from his parents and taken to a team of doctors.
Within three hours he had undergone an emergency tracheotomy to help him breathe.
Carl said: “I had full faith in the surgeons, everyone at the hospital was amazing.
“But I couldn’t help but worry, something happening around the throat is so severe, I was worried something would go wrong.”
The first time Amber and Carl saw their son he had a tube in his neck.
It was just the beginning of a very long journey for the couple who were told that Teddy would need a ventilator for the rest of his life.
Teddy was diagnosed with Moebius syndrome, a paralysis of his face muscles which means he struggles to breathe and cannot move his features, he was also born with clubbed feet.
Carl says the whole experience has turned his life upside down.
He said: “My whole family are carers and my dad looked after disabled children so I’ve been around disability all my life.
“I thought I would be fine with this but it’s such a unique situation.
“We thought we would have the ventilator and that would be us done but there is so much more to consider.”
Amber and Carl will have to move house in order to have the space and facilities to provide Teddy with the best care.
They are also looking at staying with Teddy for the next year as he undergoes further treatment at St Mary’s Hospital in Manchester.
Already the couple have a completely different parental experience, changing the ties around Teddy’s trachea tube every day and removing and cleaning the tube each month.
Carl said: “It’s second nature to us now, I never thought that would be the case but we fly through it now.
“The first time we changed the trachea it took us 45 minutes; the panic of taking away the thing that allows your son to breathe is terrifying.”
Amber and Carl are currently being put up by Ronald McDonald House as Teddy receives treatment.
He will be going in and out of intensive care units over the next year.