Matilda, a young person born with Oesophageal Atresia / Trachea-Oesophageal Fistula (OA/TOF), shares her personal journey and offers hope to parents and teenagers with similar diagnoses.
Matilda recalls her early experiences, including surgeries and the discovery of a hole in her lung at the age of seven. Despite challenges, she maintains a positive outlook, emphasising the significance of creativity and imagination.
Hi, I’m Matilda. I was born with Trachea-Oesophageal Fistula and I just wanted to talk a little bit about my experience with it, so that maybe mums who have kids that have been diagnosed with TOF/OA can maybe have a bit of hope and maybe teenagers can see how I’ve dealt with the diagnosis from when I was born. So I hope this video is useful.
If anyone has any other questions, then feel free to reach out to me. I know also that the TOF OA TOFS charity is just absolutely amazing, so you can always contact them and they’re always very quick to reply and very lovely. So you can always reach out and get some help or advice or be led to somewhere where you will get that support.
If I’m perfectly honest, I was diagnosed really young, so the last, I think, major operation I had, I guess it’s kind of a minor one, was when I was seven. I was in hospital for nine days and I wasn’t allowed to eat, which is huge, because I love eating and I think that’s where I got this scar. So that was the last thing that happened, really. And I just wanted to talk a little bit about the teenagerhood, because, in all honesty, I don’t want to say anything wrong about my diagnosis when I was a really young kid and when I was, like, zero years old, because I’m not a doctor, and I don’t want to say anything wrong.
My mum knows the most, so I can always get her to answer any questions if you have any questions about really, really early years. Because it did already happen when I was only a few months old or a few years old. I was born in Brighton and it was like we were whizzed off to the proper hospital that could deal with me when I went blue when I was born and I couldn’t breathe. My poor mum barely got to hold me and I just had to be whizzed off and taken care of. My doctor was, or at least the doctor that I do remember was Mr Singh. He’s amazing.
The last time I saw him, when he did properly discharge me from the hospital, which, of course, was a really emotional, incredible moment, when I was, I want to say early teens, he was just so lovely, and he was the one who noticed a hole in my lung. And I did get this scar. It’s crazy that I lasted so long with no one realising that I had a hole in my lung until I was seven. I was coughing, spluttering. My mum had to be with me all the time in primary school. She used to come in at lunch and help me eat properly so that I wouldn’t choke.
Luckily, I still had a lot of friends, I don’t really know how. They just heard me coughing and sputtering amongst the echoey dinner hall and it was just a thing that people just dealt with. I can’t believe they dealt with that, but that’s it.
Anyway, the point was, Mr. Singh, or Dr Singh noticed that I had a hole in my lung when I was seven. And with all the crazy X rays, I can’t believe that they didn’t see, because I obviously got a lot of X rays and stuff, and they were always testing, testing me out, seeing what was going on. It was crazy that seven years went by when I had a hole in my lung. Crazy.
So I just want to talk a little bit more about my teenagehood. So I will start from that description of what I just said about in the hall. And I was coughing and spluttering, and that was just kind of how I dealt with it.
I didn’t feel different. My mum was always amazing, and I had a good support system at that time we pretended to be rich and I went to a private school.
We couldn’t afford it for very long. It was a private primary school and made some amazing friends down there. It was great. I went there before and after I had the operation, but once I stopped coughing and spluttering, I did end up going to a public school in the same area. That’s when I did start to feel a little bit kind of out of place, because those people didn’t really know me when I was coughing and spluttering and being all crazy. So I did the odd presentation where I was saying about my illness. Not illness. Diagnosis. But I still had the odd friend and I still had a good time, and I didn’t feel like bullied or anything I just wasn’t really loving it. I was kind of waiting for the end of primary school, to kind of just pass by.
In my childhood I was always a very arty person. I used to film quite a lot, I used to draw a lot, I used to write a lot in my primary school. There used to be a section in my old primary school, there used to be a section of the library where they put my books, and it was so kind of them to do that. And I still have those books. I used to want to be a writer, and I used to draw the pictures in the books and stuff.
So I think imagination and creativity really kept me going during those hospital times. And my mum always made sure that I believed in magic, and I still do believe in magic and nature and kind of the mother earth and all of that stuff. She ended up being a yoga teacher halfway through my secondary school years, I think. Anyway, the point of saying that is that belief is so important when you’re in hospital. Like the belief that you’ll be fine, knowing that you’ll be okay. That’s how I am mainly unaffected by all of this. My mum treated it incredibly and there was magic and there was hope and there were fairies and there was belief and there was creativity.
And I was able to have a creative outlet all the time. There were always crayons in front of me. There was always a notebook in front of me that I carried around.
I could just write in. I have two main points that I have actually put in the magazine, the TOFS magazine before. And the first one is, of course, what I just said.
Like, creativity and having a creative outlet is just so important. Having those beliefs, like also getting like giving kids really amazing books that they can read and see the pictures and escape to somewhere. Roald Dahl was my favourite as a kid. I loved him. I loved all those books.
I’m grateful every single day for my support system and for my wonderful family and for my family and friends when I was a kid. They always made me feel special and like I was brave and that I was creative, and I had potential.
I do remember some things. I will say that I remember what it feels like to have that tube down your nose, down your throat, and it goes down there. I remember that very well. Remember that feeling. I remember the cannula. I think it’s called cannula. I remember being put to sleep for this operation. I remember that.
And also what helped me being in hospital and dealing with those sorts of things and maybe dealing with pain and discomfort, tummy troubles – don’t even get me started – was those breathing exercises that my mum taught me. I’d definitely look them up and maybe talk to any local yoga teachers or breathing instructors because they do exist and there’s probably some around where you are. Get some help from them and get some advice from them because, oh my god, it’s crazy how much breathing can affect your reaction to certain things. So teaching your kids how to breathe and calm themselves down and to rationalise and to see the bigger picture is really important. And what helps with that is nature. Is walks.
If you can physically do that, of course. If not, again, those books and videos and those techniques really, really help escape and deal with what’s going on for you and your kid. Anyway, the final second one that I did mention in the TOFS magazine is eat a Rainbow.
If you eat well and if you feed your kids whole foods, well rounded meals, then they’re more able to emotionally deal with the horrible things that are going on and the pain and whatever is going on. And also, you’re able to emotionally deal with it a lot better. It’s hard, depressingly. It’s really hard to eat healthy in hospital. My mum always used to go and come back with tons and tons and tons of food. She’d have a bag full of food. She always does, because that’s how we survive, I guess. And we’re still able to thrive and be healthy and have that kind of food freedom, in a way. Because otherwise, if you’re stuck with the hospital food, it’s really horrible.
So just try and do that. I know that’s so difficult, but find different ways to be healthy, to eat well, because if you have a rainbow every day, it will keep the doctor away as much as food can possibly do that. So that’s my second bit of advice.
But again, I’m not a doctor, I’m not a nutritionist. I just generally know that food is important. There’s a lot of things that you can’t control, but eating well is something that you can control, and that in itself is so magical and so important to remember.
I think you have to make the most of that, because you can’t control sometimes the medicines that you have to eat, and you can’t control that sort of thing.
Oh, I do want to speak about my medicine. So I had, obviously, the flap that I have that everyone has to separate their kind of stomach bile from coming up onto the throat. Mine’s a lot weaker, so I do regularly get acid reflux, and I used to get it a lot more than I do, but always consult your doctor before you stop with your medicine. But basically, I stopped my medicine for acid reflux because I just simply wasn’t getting it anymore. One, I wasn’t being stupid, or at least try not to be stupid and eat late at night. Two, I don’t eat really many dairy products. Three, I make sure that my head is well propped up and I’m sleeping well. I usually sleep with about three two, three pillows. Yeah. Don’t change your diet or stop your medicine without consulting your doctor. But I am very grateful that I’m not on any medicines at the moment.
That’s crazy. So, yeah, I hope the video is useful, and I just want to let you know that to give you some hope. This is not bragging by any means. If you’re a parent and you have a kid who’s struggling with a similar thing that I struggled with. I have worked with Disney, BBC, I’ve made a film I’m really proud of. I have an amazing community in Norwich, in Norfolk, which is where I live. I have lots of amazing friends. I’m living with my boyfriend, I love dancing, I love yoga. So, yeah, I’m very grateful for everything that I’ve had in my life. And sometimes I really do forget that I was in the hospital a lot of my life, a lot of my childhood. And every day, I’m so grateful for not being there anymore and being healed, and I obviously have to live with my scars, and I never felt this is the final thing I wanted to speak about, actually. I never felt like, I hated my scars, which is amazing, and I’m really grateful for that. And I think, again, that’s something to do with my mum and that acceptance and nothing’s abnormal. But I was getting changed for PE or dance or whatever, and kids would ask me like, what’s that? What is it? I used to say it was a shark bite. And I used to kind of change it up every time so you can have fun with your scars, I think. Speaking about if you’ve healed and say you’re a teenager and an adult as a TOF or whatever you’ve actually gone through, if you speak quite nonchalantly about what you’ve gone through, without putting your experience down, without devaluing it, but also kind of using humour, it’s really funny to see people’s reactions and be like, “you’ve gone through that!”. That’s crazy. And you’re like, yeah. And I definitely used that to fuel my confidence and my gratitude. I think when things were tough, I was grateful for what I had then and I’m grateful for what I have now. And I don’t think it’s any less or more. I think it’s just because when you have that mindset of abundance and gratitude, although things are tough, there is hope. So, anyway, I hope that some of that helped. And again, feel free to reach out. I’m not a doctor by any means, but my mum knows a lot, obviously remembers and knows a lot and has a lot of files of what happened when I was a kid and what my diagnosis and what my problems exactly were. So if you are interested, I can try and get that information and talk a bit more about it, maybe make another video.
But yeah, thank you so much for watching, and I truly wish you wish you well. And I hope that you have hope and confidence and able to learn techniques and advice and you have your own support