A ‘miracle baby’ who battled for his life after being born with a rare condition has shared his experiences with new friends at school.
Hugo Smith, 4, was born with TOF - a rare congenital condition which sees sufferers born with a large gap in their oesophagus.
Hugo was visited by Ella, a special ‘awareness’ teddy bear which has stayed with other TOF children around the world and comes with photographs and information about all the children visited.
He took Ella to meet his new friends at Bay Primary School last week.
Hugo was born three months premature weighing only 2lbs.
He had a large gap in his oesophagus and no direct path from his mouth to his stomach which meant that every time he breathed, air was trapped in his stomach and acid was pushed into his lungs - drowning him with every breath he took.
He started eating at 13 months old, but had a feeding tube until he was 2 and a half.
Hugo, who started school in September and is making ‘amazing progress’ according to his mum Kim, has had 12 operations already in his short life but he may have to return for another this year.
Being a TOF means that Hugo is still at huge risk of choking on each and every meal. He has scar tissue on his oesophagus from his operations, and the muscle still does not work quite as it should - so food can get trapped.
He still needs annual trips to theatre where doctors can check his oesophagus and stretch the scar issue to reduce the number of choking incidents Hugo suffers.