TOFS featured on BBC CW Radio

Phil Upton (PU), Host:
One of the most, I think, powerful things we’ve heard come out this morning is from Warwickshire mum, Emma Connor. Now Emma is reaching out to parents of babies and children born with rare, in some cases, genetic conditions after finding out the development of her own son was, really not going well.

At the age of just 20 weeks, 20 weeks scan, Emma found there was something wrong with her baby boy Vinny. Doctors discovered whilst he was still in the womb that his oesophagus was not attached to his stomach.

So within hours of being born, Baby Vinny needed an operation. That condition is known as oesophageal atresia or OA or Tracheo- oesophageal fistula TOF, and that represents 1 in 3,5000 births. So very rare, but unfortunately one every other day, 1 baby, every other day is born with those complex conditions.

BBC CWR’s Hannah Griffiths has been off to meet Emma, her husband Daniel and most importantly, baby Vinnie.

Hannah Griffiths (HG):

Hearing those things, you know your unborn baby, you’re going to have surgery straight away. As you can imagine, that was really daunting.

Emma Connor (EC):

As soon as he came out, he went straight to intensive care and it was the following day that he had the surgery. So we had to consent to all the surgeries the day he was born. We had him on the Friday, and then at two o’clock he went down for the eight hour surgery. He was an induced coma for about seven days, so we couldn’t hold him.

HG:

That’s pretty intense. It must have been quite a scary time.

EC:

Yeah, definitely. I was so scared because there were so many wires. We got to read him, which I felt like that comfort. Because I said to one of the nurses, I just feel like I just want to be able to just be close to him.

HG:

With all of this going on. Despite how intense this all is, you wanted to make sure that you could just highlight what he had and also find other mums that might need support.

EC:

I wanted to give back in a way, becoming a volunteer and it’s just making me feel like other parents not to feel so alone. And the TOFS charity is amazing. We have a Facebook group, we do lots of events. We are an amazing community. We all look after each other and we all support one another.

PU:

Well, that’s Emma talking about the TOFS charity. Well, listen to that is Tamsine Swan. She’s a trustee at TOFS, the charity that’s been set up to help with that very specific, rare condition. Tamsine’s daughter was born with it back in 2013. Tamsine,  morning to you. Good morning. Obviously, it’s been thirteen years since your own daughter got diagnosed. Did you have any idea what was going on at the time?

Tamasine Swann (TS):

We didn’t, no. Most cases of OA/TOF aren’t diagnosed antenatally. They’re just random occurrences. Some are genetic. As you said in your introduction, most aren’t, as in our case. And the first that we were aware there was a problem is when we spotted that my daughter wasn’t able to swallow saliva and she was whisked off to be checked. I was left alone for about an hour and then was given the very shock diagnosis.

PU:

Wow, that was terrifying, wasn’t it?

TS:

It was. We were in Banbury and had to be transferred to the major hospital at Oxford for surgery. A lot of children in this area are born in Coventry or Warwick hospitals, and they would normally go to Birmingham for their major surgery.

PU:

Right. And how was how was that explained to you at the time, because I imagine, you know, trying to sort of get your head around the idea that your child’s oesophagus is not linked to its stomach, for example, or not linked, you know, properly, that’s a bit that’s something to get your head around, isn’t it, Tamasine?

TS:

It certainly is. I mean, I’m a town planner by training. I have no medical background. And I can remember myself and my husband sitting down and the paediatric surgeon drawing a diagram literally on the back of an envelope to show us what the problem was and what they would need to do to try and correct that.

PU:

So yes, a lot of information to get your head around very, very quickly at a time of huge stress, as you can imagine. So TOFS, this charity, you’re a trustee of this, and, you know, you did this because you wanted to give back to others. I mean, well done for doing that. Tamasine. You must be very proud of what you’ve achieved there in the last few years.

TS:

Not just me. I mean, there’s a huge network of people working within TOFS. We have a small number of paid employees. There are currently six trustees from a variety of backgrounds. We’re all unpaid volunteers, and we ensure that the charity meets its charitable objectives. Spend any money that we have wisely to support the wider community and there are huge network of volunteers, official volunteers and just people from the wider social media network and in local communities who have found each other and are looking. Looking to just provide that support. As you can imagine, if you’re 1 of those 3,5000 occurrences at birth, you’re quite a rarity. And finding information and emotional support. And there’s a lot of requirement for that as you can as you can imagine, is a very important part of what TOFS actually provides. And it’s a growing thing.

PU:

If people want to find out a bit more about this. Tamasine where should they go? What should they do?

TS:

We do have a website. You can you can look up TOFS charity online. If you just Google that, you’ll find a huge amount of information online. And that if you know nothing about TOF/OA is probably the best place to start.

PU:

Well, look, incredible work that you’ve done. And how’s your daughter doing now?

TS:

She’s a typical thirteen year old teenager. We had a hugely bumpy ride in the first couple of years. Lots and lots of time in hospital and emergency ambulance admissions with swallowing problems and so on. That has settled down, but I think it’s something she will live with for the rest of her life. A lot of people develop problems as adults. Parts of the anatomy don’t start to function quite as well as you get older. And we’re very aware that she will need to have that knowledge behind her going forward, just in case she needs to rely on that and engage with the medical community to say this is what you perhaps need to think about in the future if I have a problem.

PU:

Tamasine, good speaking to you this morning. Great to know your daughter’s now. Just as troublesome at thirteen as she was probably at three, even if it is for different reasons. And the very, very best of luck to you and everybody in the TOFS charity. Tamasine Swan, trustee, the charity that’s been set up to help with that rare condition.

Someone who was listening to that was Marie in Binley. Hi, Marie. You were listening to this, weren’t you? Yes. This morning. And felt the need to call in. Why?

Marie Allen (MA):

Well, because my son was born at TOF 43 three years ago now. When he was born, we had no idea until he was born that he didn’t have a food gullet. 43 three years ago was a very long time, and not much was known about the condition then. Some children had been born before him, obviously with it, but a lot of them had died. So there’s not many.

There wasn’t many around, but he was just whisked away from me as well. I had a caesarean, so I didn’t really see him. They had to have him christened. And then he just went to Birmingham to have the, the sort of stomach, the whole stomach and the tube put in.

But, the one thing that helped me through it was the TOFS society, because Linda Morris was running it then, and then she just set it up and because when you were a new mother, you know, with a baby that needs tube feeding and all sorts of things that they’re being told you and you feel so alone.

PU:

I can’t imagine, I can’t imagine.

MA:

The charity just helped me an awful lot then. And I’m so proud of Emma that she’s doing the work she is. It sounds wonderful.

PU:

I think the lovely. The lovely thing. Forgive me, Marie, about this is you’ll have parents who are listening this morning with 2-3 year old babies, effectively, which is what we’ve been hearing. But your message is your son, who’s now how old is he now?

MA:

He’s 43. This is why I’ve come on now. He’s 43. I’m not saying… he still has problems as well, but he’s a support worker. He’s been a support worker for adults with so many different things wrong with them because he wanted to help others. He’s a musician. He’s been in loads of bands. He’s brilliant. He’s still doing his bands now. He’s travelled the world with a fantastic partner that he’s got. Just keep going with them. These children are special children. They’re tough. We are calling the TOF tough, I do the special children.

PU:

I love that.

MA:

I just want everyone to know that I’m here. If anyone needs to talk to me, because I’ve seen it all and we still live it as an adult. One, please let Emma get in touch with me. You’ve got my phone number. You’re very welcome to give it to her, but I just wanted to say to people that it is very important, the TOFS society. It really is to help each other out.

PU:

And I love what you said there, that TOF kids are tough kids. That’s great.

MA:

And their special, that’s really, really all I can say. I’m so proud of my son, so very proud of the things. And he manages his condition. It’s not a walk in the park or tell you as they get older, there’s other things shooting and, you know, along the way, but he manages it and he doesn’t let it. He doesn’t give in to it. He has a wonderful life and we make sure he does have a wonderful life, the people around him. And I’m so proud that these go to parents that that want that for their children. So keep going, Emma. Keep doing what you’re doing. And if I can help, um, you can get my phone number if you need it.

PU;

Nice one. Marie. Still swimming?

MA:

Oh, yes. Swimming. Yes. Every week. and exercising.

PU:

Great. Good on you. Yeah. Lovely. Thank you so much. Marine in Brinley this morning. Thanks very much, Marie. And saw quite a bit of Marie when we were doing the swimming challenge a couple of years ago for children in need. Great.

Shaun in Bedworth, “Just listening to all of this morning, Sean. My daughter was born with the same thing. She had it, though, in her throat 3 days after she was born. She also needed lifesaving surgery. My daughter is now 7. She’s doing really well. The hospital have been fantastic.”

So, you know, messages coming out there this morning that these kind of conditions, which you as a parent or grandparent can like, oh that’s it. You know, what kind of life can they expect? Full of hope and the expertise, the medical advancements, the scientific knowledge they now have, the operations they’re able to perform that they weren’t able to perform 40 odd years ago. As Marie’s pointing out, there means that many of these kids can have a very full and fulfilling life ahead of them.