James - our wee fighter

Aged just 14 weeks, James has had a tough start to life.

Next week he will undergo open heart surgery at St Thomas’s Hospital, Evelina, in London to reconstruct his heart.

With mum Annemarie and Dad Kevin, Baby James will be transferred by air ambulance to have the life saving operation next Friday.

“I’m dreading next week,” said Annemarie, “but we know we are not getting James home until he gets this operation.

“You just look at him and wish you could swap places and take it for him.

“But he is a wee fighter, he has fought through every battle and that keeps us going. We are just counting the days until we get him home.”

It was at the 21 week prenatal scan that Annemarie and Kevin found out that their baby son had a kidney problem.

“The kidneys were measuring slightly bigger,” said Annemarie.

“When you go for a scan it is usually so exciting, all you are hoping for is a healthy baby, then you hear something. They kept a close eye on us and James was born in neo natal intensive care in Belfast at 37 weeks weighing 9lb 11oz.

“Initially he stayed there for two weeks and we got him home for a week. It was lovely having him home and having the whole family under the same roof, just as it should be. His big sister Anna loved having him home. But then James had a review appointment in Belfast and got admitted back in to the Royal.

“At five weeks he went for surgery to help with the kidneys. When they went to put the tube down they couldn’t get it in because James had such a small airway, just one millimetre.

“They then had to put the tracheostomy tube in. James is now connected to a ventilator.”

Although she works as a children’s nurse in Ward 6 at Altnagelvin, Annemarie says nothing can prepare you for nursing your own sick child.

“I’m used to working with children with different problems,” she said, “but I never thought I would be nursing my own child.

“Kevin and I had to get trained up to deal with the tracheostomy tube in case of an emergency. Kevin has been amazing, he has no medical background but he has taken to it all. As soon as he saw me doing something, he stepped in and said: ‘I’m doing it now.’”

James spent four weeks in intensive care and was then sent for a CT scan on his heart and lungs which picked up an unexpected heart condition, which is why he now needs the surgery. The operation has a good success rate however James will have the trache tube and be on the ventilator for 2-3 years.

“You realise what family is when something like this happens,” said Annemarie. “The grandparents and aunties have been amazing, we would have been lost without them.

“We got James home on Saturday for one day and it was great having him home. His sister Anna, 3, loves getting a wee nurse of him. She loves having him home and she has been just brilliant through all of his.

“James is so bright. What has happened hasn’t stopped him development wise. He plays with wee toys and follows things around. He holds on to his trache tubing. I think holding it comforts him. He is so beautiful, but then I might be biased.

“This week he has been doing really well with his feeding and has been taking 60mls. It’s hard not being at the hospital all the time but James needs 24 hour care and you can’t be there all the time. You have to look after yourself to be strong for him. And Anna needs us too.”

It was just this week that the McBride family discovered their close friends have arranged a charity night on Friday (July 21) in Pitcher’s to help them with the cost of travelling for the operation.

“Our friends didn’t know how to help so they decided to do this for us,” said Annemarie. “Obviously we have had all the worry about James but there has also been the financial strain. Kevin has been in and out of work, and when James has been sick he has to take off.

“I cried when I found out what out friends have planned. It is so lovely and overwhelming to think anyone would do this for us. We are so lucky because of the people we have been surrounded with.”

The charity night which will have auction and DJ on Friday night at Pitcher’s at 8 p.m. All welcome.