A MOTHER who lost her baby son a year ago has told of the little boy's struggle with the disfiguring Goldenhar's Syndrome.
Lisa Leadbitter, 28, of Darlington, spoke out after a baby with the same condition became involved in a legal battle between her parents and doctors at Newcastle's RVI.
Hospital staff argued that Maria Aziz Al-Rafi needed urgent medical treatment but her parents, Suzanne Taylor and Aziz Rafi, of Heaton, Newcastle, disagreed.
After the case was taken to the High Court in Leeds, her parents backed down from the conflict and allowed an emergency tracheotomy to go ahead.
Lisa's son Jordan, two, was born with a hole in the heart as well as the rare disfiguring condition, which affects just one in 500,000 births.
Like Maria he, too, was treated at the RVI and was also given a urgent tracheotomy to open up his airways.
Lisa is only too aware of the parents' agonising decision. She was also against Jordan having the operation until he had serious breathing problems and spent days in intensive care fighting for his life.
Lisa, of Firth Moor Crescent, said: "It has brought back a lot of memories. I fully understand what they are going through, but at the end of the day you can't take the risk of losing a child's life.
"They have already lost two children. I was against Jordan having the tube because he could breathe on his own but then one day he stopped breathing for 30 seconds and it was critical for the next 24 hours. It was very scary.
"Then I knew that he had to have the tube. I needed to give him every chance of life."
Jordan was born without any ears, one arm shorter than the other, and a curve in his spine as well as the hole in his heart. He was unable to walk or talk.
Doctors at the Freeman Hospital, in Newcastle, were able to operate on his heart, but they were unable to perform plastic surgery on his ears until he was older. Sadly, he died in January last year.
Lisa, who had been told by doctors she would never conceive, said: "Jordan went through hell but I have never regretted the decision to give him the tracheotomy. The doctors gave him the best possible care and the best possible chance.
"This couple should know they are not alone and there are people out there who will help them."
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereComments are closed on this article