Hear OA/TOF mum and TOFS volunteer, Rachael Scott talking to BBC Radio Nottingham’s Verity Cowley.
Rachael did a great job of explaining what OA/TOF is and her daughters’ experiences as well as highlighting the lifelong aspect of the condition.
Information correct at time of recording (2022). Click here to read our disclaimer.
Verity Cowley:
I want to talk to you about a very curious, but not very well known, childhood ailment and this is to do with a child being unable to swallow. It’s a scary thought isn’t it? It does affect one in every three and a half thousand babies born in the UK. Now, Rachael Scott knows first-hand what it’s like because her daughter Grace had feeding issues after her birth.
Rachael was supported by the Nottingham-based charity TOFS and wants to make others aware about the condition. I’m delighted to say that Rachael is here with us this afternoon. Rachael, very good afternoon to you, thank you for joining.
Rachael Scott:
Thank you for having me.
Verity:
Tell me about Grace. I’m aware that you first noticed that she had feeding issues reasonably quickly after she was born. What happened?
Rachael:
Yeah, I mean she just wouldn’t feed and that probably saved her because it might have been an automatic reaction for her to not feed because something was severely wrong. She was born unable to swallow, as all OA/TOF children are. There are several other conditions that can go alongside this but the main part is that they are born unable to swallow, suffer with difficulties with swallowing, reflux issues, and respiratory issues. I mean, it is a lifelong condition basically.
Verity:
So, just take me back to those early days with Grace so she was unable to feed and obviously for you, you went, “well something here isn’t quite right”. How did they realise exactly what had happened to Grace?
Rachael:
Well, to cut a long story short, if she’d have been my first child I would have had no idea to begin with. Which is the scariest part of it. It’s not really known and it’s not necessarily, not always picked up initially before you have the baby. I knew something was wrong. She cried funny which sounds really bizarre but she cried like a kitten. We broached the midwife etc and, at a certain point, we then realised that something wasn’t right and we needed to look into this. When she ended up in hospital, when they couldn’t quite figure out straight away what was wrong, they then decided to put a feeding tube down her oesophagus and it stopped. It wouldn’t go down any further and that’s because her oesophagus ended and there was a pouch which then connected to her lungs. So anything that she had have taken in would have gone straight into her lungs and she would have aspirated. So we were very lucky that she chose not to feed and she was very difficult in trying to feed. Obviously your automatic reaction as a new parent is to give that baby what they need and feed them. So yeah, very difficult times, but then we’re very lucky. We’re one of the very lucky ones.
Verity:
Okay, how’s Grace now?
Rachael:
Oh, she’s an energetic eight-year-old girl.
Verity:
Oh is she? Wow!
Rachael:
Absolutely loves gymnastics and she loves her food. Which is a really important thing for us. We wanted her to not be scared of food chewing and they have to chew things really well. We have to cut things up and so that they don’t choke because obviously where the scar tissue has been, where the operation – the repair has been. That can obviously cause some issues continuing through life even though the repair has happened. We’re quite keen on the fact that she wants food, she eats it, and we give her it.
Verity:
Yeah, does she eat, I suppose normally? Does she eat like everybody else eats? Does she kind of put it in her mouth and chew it?
Rachael:
Yes. There’s a lot of from when she was a toddler, it was very important for us to tell her every few seconds that you need to chew and always have a drink around and plenty of fluids to help send that food down basically. Now, she’s so used to it. It’s the norm to her so we, “touch wood”, we don’t have too many swallowing issues today. But there are those that are seriously still affected even getting into teenage years.
Verity:
So tell me about TOFS then the charity? I know that you’ve you have been supported by the charity as well, I know that you fundraise for them too.
Rachael:
Yes, so TOFS is a Nottingham-based charity that’s made up of a committed board of trustees, all of which have a connection whether it be a grandchild, a child themselves and so all have an association with OA/TOF. So we obviously researched as soon as we had Grace and had no idea about the condition at all, had never even heard of it and that is a case for a lot because there’s only one in three and a half thousand babies born with it. Some doctors and consultants may only come across one or two cases in their whole entire career. So it was important for us to do our research. Basically, TOFS support families and children and OA/TOF adults too and give them the support they need so that they live life unlimited. They try and help as much as they possibly can. They are non-government funded, all donations are raised by incredible volunteers and members of TOFS and supported by anybody who’s been affected by OA/TOF really.
Verity:
Wow, well Rachael thank you for coming on and telling us a little bit more about it because that’s one of your aims at the moment isn’t it? To raise awareness about the condition?
Rachael:
Yeah, this week is TOFS Awareness Week up until the 6th March, and also TOFS’ 40th anniversary this year. So it’s big for us this year to get that awareness out there and get more people talking about it. You know we’re doing different fundraisers. We’ve got a raffle that’s launched today up until the 14th April and I work with a group of volunteers, with a fundraising working group that all have a connection to OA/TOF, and we just try and raise as much money and awareness as we possibly can.
Verity:
Well, I’m delighted you could join us and thank you for telling us about Grace. She sounds fantastic and sounds like she keeps you on your toes as well which is exactly how we expect children to be. Rachael Scott, great to have you on, I appreciate your time.
Rachael there, she was telling us a bit about her daughter Grace as well and about the condition she was born with. If you want to find out a little bit more about TOFS, their website is tofs.org.uk
