Fiona’s OA/TOF story

Fiona shares her story of being an adult born with OA/TOF.

Video transcript:

Hi. I’m Fiona and I was born with OA/TOF 53 years ago now. So I’m very pleased to be here.

Turning 50 was quite a big deal for me actually. For lots of reasons but mostly because I discovered that the surgeon who completed my TOF repair, Mr Ambrose Jolleys in Manchester, who was one of the pioneers I believe of OA/TOF surgery, actually shared my birthday with me.

And on the day my birth he was 50 years old and working and saved my life. So on his 50^th he was saving my life and so I feel like there’s a connection to him. So me turning 50 felt like quite a big deal. Perhaps more so than for a lot of people turning 50.

As a child I had I think a lot of my surgery was very early on. My parents tell stories. My dad up until he died was still extremely traumatised by his experiences of what he describes as having to give me resuscitation. My parents were, I think, understandably traumatised by what they went through with me. I was their first and only child.

So I think the early years perhaps were worse, well not perhaps, I think they were worse for them than they were for me.

I just remember a childhood of the cough. The TOF cough. Which I still have. I’m not going to demonstrate it unless it happens naturally. In childhood we were told to live a normal life really. You’ll be fine, go off and live a normal life. So that’s what I thought I was going to do.

OA/TOF related issues as a child, I think the biggest thing it stopped me doing when I was little was probably doing things like swimming and running. I found sport very difficult. I found I couldn’t breathe easily. Breathing, choking episodes, waking up in the night, sitting bolt upright, choking, coughing, which I now understand was reflux but at the time we didn’t really know that. I think we just accepted it was normal.

There was no real support. Certainly not for my parents. Unlike the TOFS charity which I think my mum would have really benefited from. She does keep in touch with the charity from time to time. She’s in her 80s now, bless her.

I’ve always been an avid horse person. I like to associate my connection with horses with my experiences actually from going for hospital appointments when I was little. I used to have to go every year to Pendlebury Children’s Hospital in Manchester. Which is the big old Victorian hospital that had a great big kind of waiting area. I can picture it with sort of marble pillars or that’s how I envisage it now. But one of the things I remember was that there was a rocking horse in the foyer there. I used to sit and wait with my mum to go in for my appointments every year, my check-ups. When I was little, as soon as I was big enough, I was climbing on that rocking horse and I used to ride it. It had a real horsehair mane and tail and it was a bit of a highlight of going for hospital appointments was being able to ride the horse. I think it felt like a real kind of, looking back now. A safe place for me to be with that horse in those in the foyer.

So as soon as I could I got my own horse at the age of about 12. Whichinterestingly coincided with me being discharged from children’s services. So my connection with horses carried on since then.

In terms of other health conditions. I have had quite a range of different other health conditions not necessarily directly related to OA/TOF. I was diagnosed with thyroid cancer when I was 23. There is a lot of evidence that exposure to radiation in the developing child, as I would have been having had lots of x-rays but a lot of other TOFS obviously did as well, is likely to have been a cause of the thyroid cancer. Of course not everybody gets thyroid cancer but I did. I was one of the ones who did. That sort of dominated my early 20s and 30s really because it wouldn’t go away. It kept coming back.

Therefore my experience of healthcare has been mainly focused around that.

I also had some gyne problems. I then discovered through the gyne investigations that I had a horseshoe kidney. Which is part of the VACTERL association. I didn’t know that.

My parents weren’t really given any information about what I had other than the main obvious thing which was the OA/TOF.

So discovering that I had kind of got this one horseshoe kidney that was slightly over to the left meant that when I did start having gyne problems, fibroids and endometriosis, I actually ended up having to have surgery to remove the fibroids because there was a risk of the size of the fibroid causing pressure on the kidney. Because I’d only really got kind of one. I know it’s two but it’s two in one. That was a knock-on effect that wouldn’t have been the case had I not had the VACTERL association.

Looking back now over the 50 odd years it’s been quite a roller coaster ride of health issues but not specifically directly connected with the TOF. The OA/TOF issues are things that I have always just lived with. Being careful with what I eat. I’ve had to stop drinking alcohol. it’s actually been a year since I had this a single drop of alcohol. I’m very proud of myself for that one because of reflux and painful stomach and things like that.

I think on the whole the sort of things that we just accept as adult TOFs a lot of other people would be at the doctors for a lot more. I think that’s one thing that I know from my experiences of all the other things is that I keep away because I feel I don’t want to go with anything that feels like it might be considered by a doctor to be trivial. Even if it’s actually something that’s quite serious. That’s something that I think doctors really need to be mindful of when someone with such a complex history comes forward for help. I think the majority of us probably don’t come for help unless we really, really need it. I’m speaking from my personal experience not from others.

The TOFS charity has been absolutely amazing. I’ve learned so much from being connected to the community.

I think the best thing was going along to the conference. I’m a healthcare professional myself as I think a lot of us are. An occupational therapist. I can honestly say that it’s the best conference I’ve ever been to. The adult conference in Warrington a few years ago was just so well run with so many good speakers. But the best thing ever was walking into a room full of people who were all coughing like me.

It was hilarious. It was like the cough was the song of my people and I felt like I’d really connected with people who would understand how things were for me.

I hope this has been helpful.

Bye.