Conwy dad training for marathon in support of son's rare condition

Chris Baker, 40, of Conwy, will raise money for TOFS - a charity which helps support families that have been affected by tracheo-oesophageal fistula (TOF).

Chris and his wife Jade have a daughter Penny, aged five, and son James.

James arrived in April last year, four weeks early.

When Jade, 36, went for a routine scan at Ysbyty Gwynedd, Bangor, she went into spontaneous labour and delivered James 30 minutes later.

Jade Baker with newborn James.

Jade, who is originally from Anglesey, said: "James went through a lot the first couple of months of his life, you know, more than most babies should have to."

Despite being premature, James was a healthy weight, but problems arose when Jade attempted to breastfeed him, and the doctors took him away to do some checks.

Baby James.

Jade said: “At this point in time, we were none the wiser. We just thought because he was premature, they were just having to give him a bit of a helping hand and check on his breathing and normal checks that they would with any premature baby.”

“We were just sort of in the middle of the night chatting about names and you know what happens next. Then the consultants came in to say, generally speaking given the fact that he's four weeks early, he's doing really well.

“However, we think that he's got a condition called tracheo-oesophageal fistula, meaning he's unable to swallow.”

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Tracheo-oesophageal fistula (TOF) is a rare condition that affects only one in 3,500 babies. The condition means that the oesophagus isn’t properly connected to the stomach meaning the baby is unable to swallow.

James Baker.

Jade said: “The doctors came in and said that unfortunately they don’t have the expertise here to be able to confirm that or operate if that is the case and they were going to have to send us to Alder Hey.

“So obviously, middle of the night, I've just given birth that was a lot to take in. 10 o'clock the next morning we were transferred by ambulance.

I was able to go in the ambulance with him thankfully, but he needed three people on hand to monitor because he had to be checked every 15 minutes for his breathing. So, my husband had to drive there himself. “

The doctors confirmed that James has the condition and planned to operate the following day. The operation involved connecting his esophagus to his stomach.

Jade said: “It was as quite a difficult operation for a premature new-born baby and they also they nicked a vein when they were operating well so he required a blood transfusion.

“Because the operation was so severe and a lot for a little baby, they had to paralyse him afterwards to give his body an opportunity to rest and recover.

“He was paralysed for seven days following the operation and then at that point they slowly started weaning him off all the drugs and medication. They then brought him round to see if he could breathe on his own.”

Before his birth, Jade and Chris were not aware of any complications.

Jade said: “I'm quite glad I didn't know because it wouldn't have changed the outcome. So, it would have just created a lot of anxiety if we had known.”

The two months following his operation were about building a feeding routine for James which involved seeing if he could feed and what he could tolerate.

Around three weeks post-op he experienced what is referred to as a “tightening” - when the oesophagus narrows.

This resulted in a stretch procedure to open the narrow area of the food pipe. Since his operation, James had three of these procedures.

Jade said: “The time that we spend at Alder Hey, we have seen so many poorly babies and children. In some ways we feel incredibly lucky because obviously you know there are some babies who have been there for a long time and will continue to be there for a long time, so you sort of you know in some ways you count your blessings.”

Chris Baker with son James.

Chris, a keen fell runner who is originally from Rhyl, has always wanted to do the London Marathon - a challenge that has been on his bucket list.

When TOFS Charity revealed they needed volunteers to run the marathon on their behalf, he jumped at the opportunity.

The couple have raised 36 per cent of their £1,500 target.

You can support the fundraiser at https://www.peoplesfundraising.com/fundraising/chris-bakers-2024-london-marathon-for-tofs

There is currently no support contact for TOFS in North Wales and the couple are hoping to become one soon so they can help families like the charity has helped them.

Expressing their gratitude towards the staff at Alder Hey, Jade said: “They really are wonderful people who just provided us with a sense of calm in the toughest of times. And their help and their support has also been invaluable. We can't thank the underpaid, overworked nurses enough for what they did for our son.”

Chris and Jade Baker with children Penny and James.

Penny supports her mum and dad massively.

Jade said: "She was four at the time and her whole world got turned upside down. It's hard to adjust to a new baby anyway, but her mum essentially went to hospital one day and didn't come home for two months. We couldn't prepare her for that.

"She's never once resented her baby brother for any of the things that he's had to go through. She's completely taken him under his wing. It's almost ridiculous how much they love each other. She is the only person that can make him giggle. We can't get giggles out of him at all. So, she's just handled this incredibly well.”