Miracle boy’s tough first year
YOUNG Noah Connell’s parents were told several times that their baby boy was going to die.
With rare facial deformities which mean his life is at risk every day, he has undergone eight gruelling operations in his young life, including one surgery which was the first of its kind anywhere in the world.
Even swallowing his own saliva or a drop of rain could kill him, but against all odds the determined toddler has survived to celebrate his first birthday.
His parents, Jade Gordon, 19, and Kieran Connell, 17, said it was a “massive milestone” for the whole family.
Miss Gordon, from Robroyston, Glasgow, said: “We were told on numerous occasions that Noah wasn’t going to make it.
“For anyone, their baby reaching one is a big deal, but it was a bit bigger for us because we have had so many hurdles to overcome.
“He had a birthday party with all our friends and family at a soft play area and then went to Blair Drummond Safari Park, who set up a special visit for us.
“It was really emotional, it’s amazing how much he has come on in the last year.
“It is a massive milestone for us and Noah.”
Noah’s arrival into the world was a massive shock to his parents as Miss Gordon did not know she was pregnant.
She was suffering from bad stomach pains which turned out to be labour.
However, her surprise quickly gave way to worry as it became clear that something was wrong with the baby.
Doctors knew instantly that something was wrong with Noah, who was born “looking like he had no jaw”.
His condition, known as hemifacial microsomia, means the lower half of one side of the face is underdeveloped and does not grow normally.
He also has Pierre Robin syndrome – a congenital condition of facial abnormalities which causes problems in feeding and breathing.
He has a small neck, floppy airway and cleft palate and part of his spine is also missing.
His condition is so severe that he cannot eat or drink because of the effect on his airway.
He is fed through a gastro tube and he can only have 620ml of a high-calorie solution every day to help him pile weight on and grow.
His mother explained that even being sick or swallowing a drop of rain could be enough to kill him.
She said: “When he was born he looked like he had no jaw at all.
“He can’t eat or drink. Even one drop of rain could be fatal for him.
“And we spend hours giving him a bath because it’s so dangerous. Last weekend Noah was sick and choked. He went purple and stopped breathing for between 10 and 30 seconds. We were blue-lighted to the hospital.
“It’s scary, but it’s just our normal – he is a happy wee boy.
“I don’t know how to feed a baby or make a bottle up. But dealing with tubes and wires are all normal to us because we don’t know any other way.”
However, the family still has hope that Noah’s miracle surgery will allow him to eat and drink normally in the future.
The life-saving operation took place at Glasgow’s Royal Hospital for Children on March 8 and involved metal rods being inserted to his face to help secure the bones and allow him to breathe.
The surgery, called mandibular jaw distraction, saw doctors break his jaw in two places, with the rods being put in place to straighten his face and push his tongue forward.
It was so rare that surgeons had to have parts send from Germany and the US and consulted with other experts to decide if the operation was even possible. It is hoped that the “scaffolding” will eventually move his jaw forward and help reduce his chances of choking.
For three weeks after the surgery Miss Gordon and Mr Connell had to learn how to turn the screws in the metalwork – a process that has to be done with exact precision.
Jade, who cares full-time for Noah, said: “Since his surgery, his jaw has moved forward 4cm, which should loosen up his airways.
“The surgery has worked as well as it can do just now and the movement in Noah’s jaw is a big improvement.”
She added that both she and Mr Connell were shocked to learn that he could be the first person in the world to have the revolutionary surgery, but had no choice but to place their trust in the medical staff.
“We asked the doctors if we could see pictures from other surgeries like the one Noah was going to have,” she said. “But they said they couldn’t.
“We couldn’t believe it when they said Noah would be the first baby in the world to have the operation.
“It was daunting to hear that but we trusted them.”
Noah is now at home with his mother and father, who is a college student.
They say they are trying to “live a normal life” before the metal rods are taken out of his face next month.