Jay-Dee has reason to smile
Long journey to create new face for boy born with rare congenital syndrome starts with operation at Bay hospital
ASIX-YEAR-OLD Port Elizabeth boy born with deformities of the eyes, cheeks, ears and jaw because of a rare congenital syndrome underwent the first in a series of surgeries yesterday to give him a new face. In a surgery lasting four hours, a team of doctors led by the head of the plastic surgery department at Provincial Hospital, Dr Chris van der Walt, created new lower eyelids and plumped up cheeks for Jay-Dee Thyssen of West End.
His surgery was done as part of the Smile Foundation’s annual Smile Week held at the hospital.
Jay-Dee was born with Treacher Collins Syndrome. It is a rare congenital defect that causes the abnormal development of facial bones and other facial tissue.
The busy little car enthusiast – or “hot wheels” as he calls them – and lover of cream soda cooldrink, was not very happy when he found out that what he had thought was a trip to the shops to add to his impressive collection of model cars was actually a visit to the hospital yesterday.
“He cried all the way from the hospital entrance to the ward,” his mom, Heidi, 42, said. “He really doesn’t like hospitals.”
Jay-Dee’s dad, Gavin, said they were very confident the surgery would be the start of a positive outcome for their son.
“We do not want Jay-Dee to grow up in the shadows,” Gavin, 41, a carpentry instructor at the Coega Development Corporation, said.
“Some children are teasing him, but we put that to one side. He is a child who is very much loved. He must be part of the community.” Heidi said yesterday afternoon that Jay-Dee was doing very well after the surgery.
“We are taking him home [today]. It is just his eyes that are a bit swollen but otherwise he is doing great. We are very grateful.”
Heidi, a stay-at-home mom, said it was a very emotional time for her when Jay-Dee was born. “At first, I did not want to see him. “My husband told me that there was something wrong with his ears. It took me a day and a half to see him,” she said.
“His paediatrician, Dr Abe Daniels, brought me some information on the syndrome. Since they brought him to me, my life has changed,” she said.
Gavin said that when he first saw his son he was not shocked.
“I was quite calm. They brought him to me, I looked at him and then handed him back to the nurse.
“I then went to tell my wife what was wrong with Jay-Dee,” he said.
“I said to her that he was healthy and was placed here on earth for a reason. We had him tested and he can hear and he is otherwise healthy. “Many, many people love this boy.” Heidi said it was a great comfort that Jay-Dee could now have almost all his surgeries in Port Elizabeth.
“My family is here. His grandparents are here. We have family in Cape Town but it is not the same as being in your own home,” she said.
She had first heard about the Smile Foundation while she was at the Tygerberg Hospital in Cape Town with Jay-Dee.
“Then we came here and met Dr Van der Walt. I was so very happy when we heard that they would be able to fit him in,” she said. “I am just thanking
God.” Heidi said she had also joined an American support group for parents with children who have Treacher Collins Syndrome.
“I couldn’t find a support group in Port Elizabeth,” she said.
“What the support group taught me was that Jay-Dee had a mild case of the syndrome. It could have been much worse.” Because Jay-Dee’s ears were still closed up and because of problems with his jaw, he did not speak a lot.
“He has a hearing aid and his vocabulary grows by the day,” Heidi said.
“He goes to a pre-primary school and next year he will go to Grade 1.” She said when Jay-Dee saw his clothes on the bed yesterday morning he was all excited.
“He thought we were going to buy him some more ‘hot wheels’.
“When he realised that we were going to the hospital, he cried from the entrance all the way to the ward.
“I had to wait for his dad to put on his hospital gown.”
The family will go to Tygerberg Hospital in January, when Jay-Dee will undergo jaw surgery.
Surgeons will then insert screws in his jaw that must be turned every day until it is growing at the right angle.
“Dr Van der Walt said we can come home after the surgery and they will look after him further here,” Heidi said.
“When we were in Cape Town [previously], the professors told me he would need surgery until he was 18.
“We are in this for the long haul,” she said. “He is too small for them to work on him too much. When he turns eight, the surgeons can fix his ears.”
Van der Walt said their only nervous moment with the surgery was the anaesthesia.
“Patients with Treacher Collins Syndrome are notoriously difficult to anaesthetise,” he said.
They created new eyelids for Jay-Dee and used fat harvested from his thigh to create some plump cheeks for the little boy, yesterday.
Smile Foundation operations executive director Moira Gerszt said the foundation had provided support for three operations for children with Treacher Collins Syndrome at Tygerberg Hospital in the past, but this was the first in Port Elizabeth.
The foundation would also provide psychological support for Jay-Dee and his family.