Mum hands out ‘packs’ to help with rare medical condition
A SWANSEA mother is spearheading a project to help parents of babies born with a rare condition.
Naomi Webborn’s son George was born with a condition meaning he was unable to swallow anything and needed surgery.
The congenital condition is known as tracheo-oesophageal fistula, or TOF for short, and requires major surgery and specialised treatment is necessary for survival.
Essentially, it means a baby cannot feed properly, having been born with a gap in the tube from their mouth to stomach, so instead of food going to the tummy it goes into the lungs.
The condition affects one child in every 4,000 born each year.
George is now 13 and Naomi, 44, is the South Wales representative for charity TOFS and aims to raise as much awareness about the condition and help families affected by it.
Over the past year she has been to the Senedd to speak to politicians and also attended medical conferences and spoken to surgeons and medics about raising the profile of the condition.
Now Naomi is leading the charge in getting dedicated information packs to parents of babies born with TOF.
She said: “For every child that’s born with TOF, the aim is to get an information pack to parents as quickly as possible. In our case, George was about six years old before we found out about the charity and the support that was available.
“So having that information to reach families straight away is so important and can sign post that help and advice is available to them.”
Up until finding out about TOFS, Naomi and her family, who live in Sketty, were very much muddling through and kept his condition very low key and private but now Naomi says the more people that know about it the better.
Monday, February 26, to Sunday March 3, is TOFS Awareness Week and a chance to shine a spotlight on the condition.
Naomi said: “The awareness week is so important because it shines a light on something many people have never heard of.
“The charity is fantastic, it keeps us updated on latest news and research along with putting parents in touch with other parents with TOF children.
“I’m the TOFS local contact for all of South and West Wales, so I am launching these parent packs here first, they will then be rolled out across the UK.
“I have dropped packs and new posters at Singleton Hospital where George was born. I even handed them over to the consultant who delivered and diagnosed him, Dr Maha Mansour, consultant neonatologist. She’s now George’s consultant for his regular check ups.”
Turning to what is in the packs, Naomi, said: “The packs are a little envelope with not too much information because it is such an overwhelming lifelong condition.
“There’s a letter from TOFS, a letter from me as the local contact to say I’m here to support them if they need me. There’s also a leaflet about the condition, some badges for children’s clothing, which highlight the condition.”
Naomi added: “I’ve delivered packs to Cardiff and Swansea, so Bridgend, Carmarthen’s Glangwili Hospital and Llanelli’s Prince Philip Hospital are my next stops. Awareness is getting better in the medical community but we want that to spread to the general population too.
“There are complications and things that will affect someone with TOFS throughout their life unfortunately. Yes it is diagnosed at birth and there is surgery carried out at the time and throughout childhood – but then going into adulthood the condition isn’t as well looked at, so that needs to change too, more support throughout life.”
■ For more information about TOF visit https://tofs.org.uk/