Little boy trapped in a silent world
WHILE most three-year-olds babble incessantly, little Connor Reed's mum has never heard him utter a word.The angel-faced toddler was born with a benign tumour on his thyroid gland, which covered his airways, weighed around a quarter of his body weight and robbed him of his voice.
By Jessica Nicholls
WHILE most three-year-olds babble incessantly, little Connor Reed's mum has never heard him utter a word.
The angel-faced toddler was born with a benign tumour on his thyroid gland, which covered his airways, weighed around a quarter of his body weight and robbed him of his voice.
To help the little boy breathe, at just three weeks old he underwent major
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surgery to have a tracheotomy which three years on is still in place.
Since Connor was born on December 6 1999, parents Lorraine and Richard from Ascot Drive, Ipswich, have been taking him backwards and forwards to Kings College Hospital and Guy's Hospital, both in London.
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A carefree, normal child's life is something the youngster has never known – and his plight has touched the heart of family friend Gill Jeffery who nominated him to be the Evening Star's Kid in a Million.
Connor's problems were first picked up while mum Lorraine, 32, was
She said: "In the last stages of
pregnancy I just blew up to a
"I had too much amniotic fluid and the baby is supposed to swallow it but he could not so I was over-producing."
Connor was diagnosed with a
terratoma, which is a bunch of cells that are left over when the foetus is formed.
Lorraine said that Connor's case is unusual because terratomas normally attach to the base of the baby's spine.
She said: "The chance of having a baby with a terratoma in the first pregnancy is about one in a million."
When Connor was born he weighed about 2.3kg (around 5lb), but when the terratoma was removed he weighed only 1.8kg. The tumour weighed 500g.
Connor soon had to have a tracheo-
tomy to help him breathe. This means Lorraine often has to suction out any fluid that may get stuck in the tube and there is also a risk that Connor can easily choke if the tube gets blocked.
To give Lorraine a break from the 24-hour-a-day care that Connor needs, a community team is on hand, and Connor often spends a day with a woman he knows as Aunty Linda, from the care team.
Anyone who looks after Connor has to be able to perform an emergency
tracheotomy, which means it is difficult for Lorraine to get babysitters.
Once Connor began to choke – but luckily Linda was on hand.
Lorraine said: "He was eating porridge and he wanted to get out of the chair.
"He started to cry but he still had a mouthful of porridge and the food went down the wrong way."
Because of the terratoma, Connor only has a tiny airway which surgeons have managed to make for him.
Lorraine said: "Linda did an
emergency tracheotomy and called the ambulance.
"By the time I met them at the hospital Linda was upset because she really thought she had lost him.
"You do panic to start with when
it happens and then you go on to
autopilot but I have never had to do the resuscitation like Linda had to do."
Connor has had several sessions of laser surgery to try and break down the abnormal tissue in his throat but on October 29 had to undergo major surgery because the lasers were not making enough of an impact.
It was hoped that by the time he was two years old doctors would be able to take out the tracheotomy. But the laser surgery was not successful so he could be five years old before it is taken out.
The outcome of October's operation will not be known until February so there could be many more operations coming Connor's way.
As he rolled around the front room of his home, totally absorbed in looking at our photographer's camera, it was hard to believe that this little ball of energy had only been out of hospital for just over a week.
He is inquisitive and charming in his own silent way, and did not letting the fact that he couldn't speak stop him joining in with the three adults in the room.
It is not known whether his latest
operation will enable him to speak at last – but Lorraine hopes that some day he will be able to.
One of his vocal chords is paralysed because of the amount of surgery he has had, but there is still another one that means he will be able to make some sounds eventually and he is having lots of speech therapy.
For now, though, he is learning sign language at a rate of knots.
Lorraine said: "We started him off on a more basic one but we have had to go on to teach him British Sign Language.
"He is so inquisitive that he kept asking what things were and there were
not enough words in the more basic sign language for him to learn."
Connor knows no other life and does not know he is different to the other
children at the Sunshine Pre-School Nursery in Capel St. Mary where he goes once a week.
Lorraine said: "He goes to nursery
and talks to all the children in sign
language and then looks at them like they are stupid if they don't understand him.
"Some kids at the nursery will go straight up to him and ask what it is and some just look and ask questions later.
The nursery teachers have been really good and told all the children about it."
No-one knows what the future holds for Connor and whether he will ever be cured of his condition.
Lorraine said: "Because he is three years old they cannot say whether it will always be there.
"They might find that cure and it can still be treated by surgery. It is life threatening but not terminal."
n The Kid in a Million chosen will meet Santa Claus and go on a sleigh ride around Ipswich this Sunday with their family.
They will also be given a
present and be treated to a slap up meal to give a well-earned sparkle to their Christmas.