Doctors mull over plan to treat ailing baby boy
DOCTORS from the Red Cross Children’s Hospital in Cape Town are being consulted in the hope of helping a baby born in Port Elizabeth with an extremely rare condition which has caused fused eyelids.
While it is not yet known whether or not the one-month-old boy from Paterson will ever see, doctors have performed scans which show he has one underdeveloped eye and another more fully formed eye.
The little boy was born at Dora Nginza Hospital.
Neonatologist Dr Cheryl MacKay said the condition was extremely rare.
“It is a congenital disorder, meaning that the baby is born with it,” she said. “I have never seen a case like this.
“In many cases, we will never know what caused it but in some it might be genetic.”
MacKay said they were putting together a treatment plan to see what could be done for the child and establish if there was a chance the boy would be able to see at all.
She said department of opthalmology head Dr Mark Jacoby had been consulting with other specialists on the way forward for the baby.
“A plastic surgeon will also see him [the baby] this week to see what can be done.”
Jacoby said he had diagnosed the baby with cryptophthalmos, an extremely rare condition.
“This is the second case I have seen in 19 years.
“This child may have Fraser syndrome. This would explain some of the other features like an absent kidney and an encephalocoele [protrusion of the brain through the skull].
“I am consulting with doctors at the Red Cross Children’s Hospital to find a way forward.”
Jacoby said the child had both eyes. “The right eye is very small [microphthalmos] and the left eye is of a more normal size, although it is impossible to say how it will function.
“One can operate to open the lid fissures but the prognosis remains poor and blindness is common,” he said.
The baby is not being named at the request of his mother, who however, had no objection to his picture being used.
The woman said her son was born on July 19. “He is doing well otherwise. He is drinking well. I call him my gift.”
The baby was delivered by C-section two weeks early after doctors saw a growth on the side of his head on a scan.
“We did not know about the eyes,” his mother said. “It was a great shock.”
She said she hoped to find other women who were raising blind children to establish what her son would need and how she could best help him.
She had been working before the birth of her son but did not know if she would be able to carry on as he would need a lot of care.
Dora Nginza social worker Pamela Rubushe said they were counselling the mother and wanted to provide as much support for her as possible.
Nurses were rallying around the woman and two councillors – Kholeka Nqumbule and Uha Lungi Caga – and the provincial chairwoman of the Democratic Alliance Women’s Network, Celeste Barker, had also visited the mother and brought gifts for the little boy.
Rubushe said anyone who is raising, or has raised, a blind child and could help with advice should contact her on (041) 406-4238.