A baby boy who suffered debilitating seizures every two minutes is now expected to lead a normal life after surgeons found a cure.
Four-month-old Adam Ayub suffered his first infantile spasm as a newborn in May this year which led to a series of hospital tests and examinations.
After he and his mother Barbara Sygnecka were referred to Bristol Children’s Hospital for an MRI, it was confirmed Adam had a serious brain malformation.
Adam was started on anti-epileptic medication and discharged from hospital, but as his seizures grew progressively worse the medication had less of an effect.
The family were readmitted to Bristol Royal Hospital for Children and different medication was tried, but his seizures progressed to the point where Adam was holding his breath, fitting every two minutes.
During this time he was moved to the paediatric intensive care unit (PICU) within the hospital, so that he could be intubated and receive one to one care.
Barbara said: “It was like his brain was on fire, fitting so often and not being able to concentrate on anything else, even the slightest touch could cause so much brain activity.
“The team in the intensive care unit were amazing, they not only took great care of my son but of us as parents as well.”
It came to the point where an operation called a hemispherotomy was the best course of action.
Mike Carter, the paediatric neurosurgeon who performed Adam’s operation, said: “A hemispherotomy is a major operation that disconnects the seizing hemisphere of the brain electrically from the rest of the brain, whilst leaving the brain tissue intact.
“It represented a considerable challenge surgically and anaesthetically, because of Adam’s small size and also because he was so critically unwell.
“However, we were hopeful that there would be a good response and, because of his young age, that the other areas of his brain will eventually be able to take over the function of the damaged section.
“Epilepsy surgery can revolutionise the lives of young people, and in cases like Adam’s, it can literally save a life.”
After being in the operating theatre for 10 hours, Dr Carter was able to deliver the news that the surgery had been successful.
“Dr Carter was brilliant, he was so positive and has such a big heart, it was great to have everything explained so clearly,” said Barbara.
Since the operation in early July, Adam has gone from strength to strength. He is now breathing independently and, after a few seizures in the first two weeks following the operation, has not had an episode since.
There are not enough words to say thank you to everyone,” said Barbara. “PICU, the neurosciences team, physios, speech and language, porters, I’m so grateful for all of them.”
“Ward 38a made the hospital feel like home, even during the worst of times.
“I know our journey is not finished, but this place has given my son the chance of a normal life.
“The staff at Bristol Royal Hospital for Children will always have a special place in our hearts.”
