The little boy who has had to overcome so much

It was a difficult birth that required a forceps delivery and almost as soon as he was born, mum Jenny noticed something strange about the right side of her son’s head.

However she was reassured Aaron was fine, that it was just due to the traumatic birth and things would sort themselves out in time.

When Aaron was four months old, Jenny raised the issue again with her health visitor who agreed that they should get a doctor’s opinion.

At an appointment at Daisy Hill Hospital, the Gilmores were told that Aaron had an asymmetrical-shaped head and he would have to be seen by a Paediatric Neurosurgeon in the Royal.

However with there only being two such experts in Northern Ireland, they were warned of huge waiting lists.

Despite trying everything to be pushed up the waiting list and constantly ringing the hospital for updates, the Gilmores had to wait until January this year to be seen by Mr McAuley.

As soon as he saw Aaron, he diagnosed a condition called Right-sided Uni-Coronial Synistosis.

It was explained that when a child is born there are four plates in the head which normally don’t fully fuse until the age of 18.

However, in Aaron’s case, one of the plates had joined before he was even born meaning his right side had stopped fusing, pushing his left side out.

Despite the devastation at what they were told, the Gilmores were finally relieved that someone knew what was happening and they were eventually getting answers after months of frustration.

At this stage the family was told Aaron’s condition was extremely rare and he required major specialist surgery that couldn’t be done in Northern Ireland.

It was recommended that they take Aaron to the Cranio-facial Unit at the John Radcliffe Hospital in Oxford. Jenny said, “This was January 2011 and we were told that the operation should be complete by Easter.”

More waiting and frustration followed with the Gilmores sitting in limbo waiting for the phonecall that was going to change their lives. The call eventually came and the family prepared to travel to Oxford for Aaron’s operation on May 5.

Prior to surgery Jenny and David met with the surgeons who showed them the 3-D scan of Aaron’s head. Jenny explained, “It was awful seeing in 3-D just how badly shaped and formed the right side of his head was. His eye socket was completely out of line and his nose was also affected.

“He needed major surgery and we were warned that the operation would require Aaron’s head to be cut from one ear over the head to the other. His skull would be split and his forehead split up like a jigsaw. It scared the life out of us as we realised Aaron’s head was basically going to be rebuilt.”

“We couldn’t take it in. This was our precious wee baby and I asked if he really needed the surgery and did we have to put him through this. We were told we basically had no choice as Aaron would eventually deteriorate with seizures and fits.”