Stephen Bailey talks to the parents whose young son suffers

from a rare disorder which affects only one in 3,000 children

A PEA almost caused the death of a baby boy.

Terry Smith had to resuscitate his young son because an extremely rare disorder meant even the smallest and softest of food could cause him to choke.

Louis was born with a windpipe that finished in a dead end.

Despite an operation to correct it, he still has trouble swallowing and even baby food blocked off his throat.

Terry said: "I had to resuscitate him because a pea was stuck in his throat and he had to have emergency surgery to have to it removed.

"They took him to Alder Hey and they had to put a camera with a grab down his throat to remove it."

Louis, 18 months, suffers from Tracheo-Oesophageal Fistula, or Tof.

It affects one in every 3,000 babies and causes an abnormal connection between the trachea and the oesophagus.

"If the gap is short enough, like with Louis, they can do corrective surgery at birth to connect them," said 40-year-old Terry of Main Street, Halton Village, Runcorn.

"Louis still has difficulty swallowing because of the scar tissue," he said.

"Sometimes the gap is so long children have to be fed by a tube into the stomach."

Parts of the intestine can also be transplanted to the oesophagus because it uses a similar motion to force matter along.

Tof is believed to be genetic and can cause limb disorders - one unfortunate girl Terry met had backward facing hands beginning at her elbows, each with only four fingers.

"Compared to some of the other children Louis is doing quite well," said Terry.

"But with it being quite rare, a lot of doctors have never seen it. Most have never even heard of it.

"Louis' prognosis is good, all the conditions he has are treatable. I have met adult Tofs and they are the same as everybody else."

Louis can only eat soft food until learns how to swallow and he has to have operations where a balloon is inflated in his throat to stretch it.

Terry and wife, Gill, aged 38, find it hard to get babysitters.

"People are wary, which is understandable. Louis has been blue a few times but a good pat on the back clears it up," he said.

The couple first knew there was a problem when doctors found Gill had too much fluid in her womb during pregnancy.

This was because Louis, unlike most babies, couldn't swallow the amniotic fluid around him.

As soon as he was born a special tube had to be put in his throat and he was given a barium meal so doctors could trace the passage of food with x-rays.

"It was a bit scary at first because we didn't know what Tof was," said Terry. "It doesn't matter how much they say it's treatable, your baby is still in a life-threatening condition."

Terry and Gill have been greatly helped Alder Hey hospital and by their families, as well as the support group of Tof' sufferers, TOFS.

Terry said: "The support TOFS give is invaluable. It has put our minds at rest because you always think the worst and when they tell you 'it's not like that at all' it's a huge relief."

To find out more about Tof or to make donations, call TOFS on 01159-613092.