Page last updated at 14:58 GMT, Wednesday, 25 February 2009

Losing a son to Ohtahara syndrome

Carol Nahra's son Dillon died not long after his first birthday from Ohtahara Syndrome, the same condition which afflicted Ivan Cameron.

Dillon and Carol
Dillon died of pneumonia in May 2007

Unlike the Camerons, who had Ivan for six years, Dillon was never really integrated into the family's home life.

The family knew something was wrong with Dillon almost immediately after he was born.

He had been taken away to a neonatal ward because his breathing wasn't quite right, and the consultant noticed that he had a very large head.

A scan was performed and the diagnosis came very quickly.

"I cannot quite explain how we felt," said Carol. "We had gone to hospital expecting a healthy baby - we had already had one, Noah, who was two.

"It was totally devastating."

The struggle to cope

After two weeks Dillon went home. Because doctors in the hospital had medicated him almost straight away, it wasn't until then that Carol and her family actually saw him having a seizure.

Dillon was able to come home in the afternoons when he was well enough
On a bad day he could have 20 seizures in an hour.

The family tried all the drugs but there was nothing that could stop it - at best they were dampened down.

After two months they took him into hospital for some jabs and another consultant appointment.

"We were struggling at home because of the seizures and his terrible reflux after a feed," said Carol.

"The doctor could see how poorly he was - he was admitted straight away.

"I don't think he spent more than a couple of nights at our home after that, although when he was well enough he would come to us in the afternoons and stay into the evenings - perhaps several days in a row.

Leaving a legacy

"I felt so much guilt about his being in the hospital and I did think about how we were all going to carry on, and whether it would end soon."

I remember giving him a bath while we helped him lick a chocolate lolly - and it did look as if he was smiling, as if he was enjoying himself

At 10 months Dillon's seizures became very intense and he was clearly distressed by them.

Towards the end of his life the doctors were having to give him so many drugs to treat the seizures that he was asleep nearly all the time.

"I was his mother - I felt very attached to him in many ways and there were every now and then things which gave him pleasure," said Carol.

Baths seemed to calm him down.

"I remember giving him a bath while we helped him lick a chocolate lolly - and it did look as if he was smiling, as if he was enjoying himself."

Dillon was never able to eat without a feeding tube though.

"The nurses in the hospital grew very attached to him," said Carol.

"There was no way we could have afforded the care he needed at home but I feel he was much loved and cared for in the hospital.

"I don't think he knew me or my voice particularly. Everyone wanted to read something into his expressions. I wasn't sure - but there were definitely some days you felt you could get through to him."

In early May 2007, Dillon finally succumbed to pneumonia. The family had been prepared for this and had been told that this was most likely the way that he would die.

"His elder brother, Noah, spent so much time in the hospital," said Carol.

"Everyday he would find new playmates and learn how to get along with others.

"He has grown into a very sensitive and caring little boy. I like to think of that as Dillon's legacy."

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