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Parents shine light on son's rare condition to raise awareness

21 February, 2024 

The parents of a 10-month-old baby are raising awareness of a rare condition that left their son in intensive care for seven days following his birth.

During April 2023 Jade Baker and her husband Chris, welcomed their baby, James, four weeks early at Ysbyty Gwynedd.

Jade, who works as a Team Secretary in Bryn y Neuadd Hospital, attended the hospital for a routine scan but went into spontaneous labour and delivered James 30 minutes later.

She said: “Despite being premature, James was a healthy weight, but the problems began when I attempted to breastfeed him, and the doctors took him away to do some checks.

“Following some tests the doctors came back to us and told us that they think he’s got a condition called trachea-oesophageal fistula, meaning he’s unable to swallow.”

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 was transferred to Alder Hey Hospital in Liverpool where he underwent an operation connecting his oesophagus to his stomach the following day.

“The care we received at Ysbyty Gwynedd was excellent. From the moment I went into spontaneous labour, the delivery, the shock when we realised James wasn’t well, even the transport team to Alder Hey; they all looked after us and communicated with us throughout. They provided us with a great sense of calm in a really scary situation and I’m grateful for that. A special mention to Sarah Harris who delivered James, who coincidentally was our community midwife with my first born, Penny; she was wonderful and informative and I’m really grateful she brought our son into the world safely.

“The operation James underwent at Alder Hey was a lot for a little baby, he was cared for by the critical care team for the next seven days to give his body an opportunity to rest and recover. Following this the medical team woke him up to see if he could breathe on his own.”

Thankfully, James made a full recovery following the operation and the next two months were about building a feeding routine 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 – he has since had two further procedures of this kind, known as dilatation.

To raise awareness of the condition, as well as sharing their story publicly, James’ father Chris is taking on the London Marathon to raise funds for TOFS Charity (a charity providing lifelong support for those born unable to swallow), who has supported the parents since the birth of their son.

Jade added: “When TOFS Charity revealed they needed volunteers to run the marathon on their behalf, Chris jumped at the opportunity.

“There is currently no support contact for TOFS in North Wales and we hope to become one soon so we can help families like the charity has helped us.”

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