Little Jack’s cerebral palsy battle inspires £20k fundraiser

But the Banbridge couple never imagined the christening would take place as their son was fighting for his life at Craigavon Hospital four hours after he had been effectively “born dead”.

Jack was born with severe cerebral palsy - a neurological condition that affects a child’s movement and co-ordination - and it took doctors three hours to revive him after his mother was rushed for an emergency caesarean section.

Just two hours earlier Joanne had awoken at home with pains which she assumed to be the first signs of labour and, on the advice of medical staff considering she had had a Caesarean with her first-born, the couple made their way to the hospital for what they hoped would be a joyous occasion.

On arrival at the hospital the baby’s heart rate was found to be very low and doctors realised Joanne had suffered a very rare and potentially life-threatening condition known as a “uterine rupture”.

“When Joanne felt the pains that morning at 3am her womb had ruptured and Jack’s oxygen supply had filled with blood,” Neville told the Leader from his Drumaghadone Road home.

“When his heart rate was low just before he was born we knew something was seriously wrong.”

Within half an hour Jack had been delivered by medical staff who then worked to revive the newborn and assess how severe an effect the lack of oxygen had had on him.

At that stage Neville said neither he nor his wife were really aware of what was going on and it wasn’t until a few hours had passed that they were informed Jack was in a critical condition.

“We were told he was a very sick baby and the next 72 hours would be crucial,” said Neville. “Every minute felt like a lifetime - it was a very emotional time for us.”

Spending the next few days in hospital with their new son, Joanne and Neville said they monitored and watched every movement and just hoped their son would pull through with as little brain damage as possible.

While in hospital Jack also tested positive for the Pseudomonas virus on his skin - an added worry for Neville and Joanne.

“That was the last thing we needed at that stage,” he said. “Thankfully it didn’t go any further than that. We were already so worried and then we were coming home each night to watch the news and hear of the parents who sadly and tragically lost their children. We just wanted Jack home.”

With family support to look after 18-month-old Grace, the anxious parents spent all the time they could at Craigavon’s Neo-Natal and High Dependency Units where Jack was expertly cared for by medical staff.

But around a week after their son was born Neville and Joanne were told the news they had been dreading.

“The doctor asked if we could speak in private and we took the long walk to the Rainbow Room in the hospital,” said Neville. “We were told that unfortunately Jack had been badly brain damaged and had little to no brain activity. Our whole world just came crashing down around us.”

It was at that point that Neville said their outlooks on life changed irreversibly.

“It’s amazing how quickly you adapt in different situations,” he said. “We were given Jack for a reason. It makes you take a completely different outlook on life. These days people are worried about their finances and we were no different.

“But when Jack was born, and since then, things that were important became unimportant. Jack became the most important thing for us.”

After two-and-half-weeks of hospital visits Joanne and Neville were relieved to finally bring their new son home - and his big sister Grace was delighted to meet him, said her dad.

“Grace is great with him,” said Neville. “We had been showing her pictures of her brother, but she hadn’t been able to visit him. As soon as we got him home Grace just loved him. She wanted to hug him all the time and help look after him.”

While Jack looks like any other baby, his parents were told he may never walk or talk, and will experience seizures for the rest of his life.

“While we know there will be difficulties with Jack’s development we have seen great progress since he was born. I remember looking at him lying there with tubes attached to his little body and he looked so vulnerable. We felt so helpless.

“But now Jack has passed a hearing test and we know he has some sight. It shows how much of a fighter he is to have come through all that. He will likely be very stiff-jointed. He has already started physio for that. We know caring for Jack will be a full-time job and we are prepared to give him the best opportunity in life.”

Neville’s outlook is a positive yet realistic one - conceding that Jack may not be able to do the things other children can, but adding that his life will be one filled with love.

“You can get very down and depressed,” he said. “Knowing that Jack was a perfectly healthy baby right up until 3am is very difficult. In that hour and a half our lives changed forever. Up until then Joanne’s pregnancy had been 100 per cent.

“But Jack is the one who has had the hard start in life - we have lived a lot of our lives already and now we are concentrating on him and Grace and trying to make things as normal as possible for them.

“We’ve had a number of meetings with medical staff and it has been established that nothing could have been done to prevent or foresee what happened with Jack. Nature took it’s course - and unfortunately in this case it was a very cruel course.

“We love Jack - he is our only son and nothing that has happened changes that. He is a baby like any other - but he needs different medicines and therapies to help him along.”

And in looking towards his future care, Jack’s parents said they are completely overwhelmed by the generosity of those who attended a recent charity day in his honour.

The event, hosted at Banbridge Golf Club, is thought to have raised in the region of £20,000, with some of that going towards Craigavon’s Neo-Natal Unit and the Buddy Bear Trust in Dungannon which specialises in care for children with cerebral palsy.

“For people to donate that amount of money in the times we are in is just amazing,” said Neville. “We didn’t have a figure in mind - but that is definitely way above any expectations we may have had.”

Some of the money may help Jack in the long-term Neville said, when they will take any opportunity to enrich their son’s life.

“Nobody knows what the future holds,” he said. “There might be a medicine we can buy or an operation we can take him overseas to get. All I know is if there is something, we will be trying it in the hope we can improve Jack’s life.”

Special thanks from the Reid family go to the staff at Craigavon Hospital and medical staff who have tended to Jack since; the captain and council at Banbridge Golf Club, Golf Pro Jason Greenaway and Martin Mulholland who helped organise the fundraiser and make it a success; all those who lent a helping hand and donated on the day.

Further donations can be made at the family’s request directly to the Buddy Bear Trust in Dungannon.