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17 August 2017

There are not enough words to say thank you – Mum praises Bristol Royal Hospital for Children staff after infant son seizures left him needing intensive care

Four and a half month old Adam Ayub can now look forward to leading a normal life, following an operation to stop his debilitating seizures.

Adam Ayub now

Mum Barbara Sygnecka, from Gloucester, noticed Adam's first infantile spasm in May this year and took a video to show her midwife. She was advised to go to the emergency department, where they could carry out an EEG (electroencephalogram - a test which records brain activity) to find out whether there was anything to be worried about.

After several tests they were referred to Bristol Royal Hospital for Children for an MRI (magnetic resonance imaging) scan, which confirmed that there was a 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.

Adam Ayub in Ward 38

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.

"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," explained Barbara.

"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, explains: "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."  

Adam Ayub post surgery

After being in the operating theatre for 10 hours, Mike 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"

"Ward38a 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."


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