My name’s Scott, and I'm 47. I run a video agency, where we do podcasts, videos, live streaming and virtual events. I have three children with me – Thomas who's 23, Oliver who's 20, and Rosie who's 16 – and then there’s Alexander, who we sadly lost at birth. Thomas has a variety of complex disabilities, resulting from his traumatic birth, during which he sadly lost his twin brother, Alexander. Thomas has a global brain injury, so every part of his brain is affected. He has a cortical visual impairment, is registered blind, has no speech, and the mental age of less than a one-year-old. He’s fully mobile, which is great for him, because he loves jumping on a trampoline. He's fed on a gastrostomy tube because has nothing my mouth, due to a hypersensitivity which he developed when he was very young, and he relies on me and his mum for his personal care. He suffers from epilepsy, and he has grand mal nocturnal seizures, which are the probably the worst kind you can get because they are a massive seizure of the body that happen at night. When he has a seizure, it hits his respiratory system and he stops breathing – so the danger is we won't find him in time. He has a very sensitive rescue remedy for that, which is quite hard to manage in itself. Other than that he's a really happy boy!
I had Thomas and Alexander when I was 25. I was running a company called Magmasters in Soho, which was a well-known audio post-production facility. I’d been there for a year, and my wife, Jane, was expecting twins. They were the most famous twins in Soho, because I couldn't help but tell everyone I met about the fact that I was having twins. Everything was going fine; there were some concerns halfway through the pregnancy that twin-to-twin transfusion might be happening – that’s where one twin becomes the ‘donor twin’. In an extreme situation, you end up with a tiny, tiny baby and a massive one –– but in Thomas and Alexander's case it was just slight.
About two weeks before they were due, Jane had a show, so we went to the hospital, they put us on the monitors and told us everything was fine. Initially, they were able to use two heart monitors for each of the twins, but by the next visit, they were too big to monitor separately, and they didn't know which baby was which. It happened a couple of times again, but you listen to the professionals and wait to see what's happening. I remember that on one visit that there was a sharp drop on the heart monitor, but then it went back up and everything carried on. At the time, everyone was saying that they thought it was something wrong with the technology.
On 22nd July at 2pm, I got a phone call from my sister-in-law who told me that I needed to come home because Jane had to be rushed to hospital. She said that they couldn’t hear one of the heartbeats, but they thought it was probably ok because of what we’d seen on the monitors before. So I got home as quickly as I could. By the time I got there they were already at the hospital, so I dashed there. As I walked into the room, my sister-in-law's there, and Jane's there. The midwife manager was trying to find the heartbeats of the twins. They thought one of the machines was broken. Then they brought another machine in, and they still couldn't find a heartbeat. So in comes the consultant. He brings in the ultrasound, and then once he sees what he's looking for, he brings in another consultant and another ultrasound machine to confirm, and then they told us that we’d lost one of our babies.
It became an emergency very quickly. They want a natural delivery, if possible, because it's better for the surviving baby. However, Alexander had slipped into the birth canal at this point, and so there was no way that they could do a natural delivery. Thomas was going into high distress and his heart rate was going up and down to frighteningly low levels. Meanwhile, me and Jane are trying to process what's going on in the room. Then they had to take them into theatre. I just remember putting on the gown and the mask and the hat, and looking in the mirror and thinking, ‘Life's never going to be the same again. It's going to be a bit different. But you're going to be okay. Just get in there. Just be brave.’ So we go into the operating theatre, and it's silent. Everyone is super professional. They tell Jane what's going to happen, and then cut her open for the caesarean. They bring Alexander out straight into a cot and they take him away to clean him up.
The focus now is on Thomas because his heart rate’s dropping to less than 10. They take Thomas out and he’s got the cord wrapped around his neck five times, so had he been delivered naturally; he wouldn't be here either. So already Alexander has saved his life. We don't hear any crying, we just hear machines, and they’re working on him. Finally we hear a cry. It was a miracle, an absolute miracle. They show us Alexander, who’s been cleaned, and then we just focus on Thomas because he wasn't doing so great, but he then scored well in his Apgar tests. Then they put us into a room, and by now it's around 8pm and it's dark, and we're just in shock. They bring the babies in. Alexander was with us for an hour or so and we can lift him up and hold him – that was very precious. Thomas then went downhill very quickly and was rushed into the special care baby unit, but the roller coaster didn't stop. He had a seizure while his mum held him in her arms for the first time. Then they were worried about meningitis and everything else, and he had a lumbar puncture. He was in hospital for two-and-a-half weeks. Then we had to deal with a funeral for Alexander, and trying to process all this very quickly. We managed to find a plot in a church cemetery in a beautiful place nearby, in Essex, because we thought Thomas might miss his brother, and this would be somewhere nice for him to visit.
We had the house cleared before we got home because we’d had the nursery done, and there were two of everything. Some very good friends of ours and my sister-in-law had the hard journey of going back to Mothercare with the car seat, cot, this and that, which must have been just awful.
As Thomas grew, we noticed he was light gazing. He got to six months and we just didn't think things were quite right compared to other children. At the same time, he wasn't really eating very much and found it hard to wean. The specialists were saying, ‘Look, he probably just doesn't want milk, so we need to get him on something else’. They'd forgotten that he was a twin that had a traumatic birth. So we were trying to feed him, and then he just decided he didn't want it anymore. Later, we found out that he had a cortical visual impairment caused by the brain injury he endured at birth, which meant he couldn't see when the spoons were coming and he would choke on his food, which was awful. He just stopped eating and lost weight, way too much for a baby; I think he was around nine or 10 pounds. So they put an NG tube down, which was hugely horrible and traumatic. Thomas was allergic to the tape, so his face was red raw, and all that did was make the situation worse for him because of his hypersensitivity. At that point, it wasn't that he couldn't he couldn't swallow, he just didn't know what was going on. And his natural reflexes, probably due to the trauma of his birth, just weren't there. That went on for a while. We were trying to get him to eat, but it just didn't happen. He then ended up having a gastrostomy tube in his tummy. He's had that since he was around 18 months old, and that's how he's fed ever since.
Thomas’s light gazing led us to have an ECG, which confirmed that he had a cortical visual impairment. A cortical visual impairment affects how the brain interprets what you see. When the optic nerve sends a signal to the brain, the first thing your brain does is flip what you see, because it's upside-down, and then you can work out depth, texture, colour and edges. If I gave Thomas a green tennis ball and a Granny Smith apple, he wouldn't know which was which; he probably wouldn’t even be able to see it, because it's off his peripheral vision. And then, as a follow up from that, we had an MRI scan, which confirmed he had a global brain injury. If you look at a brain scan, you see blood flow, and Thomas basically had lots of grey ‘shrapnel’ over his brain, which suggests dead cells. This means that, as a 23-year-old, he has no communication; he can't talk and has very limited understanding. He's got mental capacity of less than a one-year-old, and he's still in pads.
Alexander had a true knot in his cord, and he died from asphyxiation. We later found out through some obstetricians, that Thomas's brain injury happened because, when Alexander died, Thomas sensed his brother's blood pressure dropping and gave him all his blood to keep that blood pressure up. Then he would have just had fluid to keep his pressure up, except it's not oxygenated fluid. So that's where the oxygen starvation came from, which caused the brain injury. So Thomas tried to save Alexander, and Alexander saved Thomas.
If I think about Alexander, he doesn't really have an age. In my mind, the only picture I have of him is as a baby. If I think about him developing and wondering ‘what if’ that's a road to nowhere, because you can't change that. So, getting to that point of acceptance was important, just like learning to accept Thomas's disability. I went through a whole grief process with Thomas too; because during his birth, I'd lost hopes, dreams and plans. It’s ironic that in my job it's all planning and organisation, and I always plan for the worst-case scenario. With Thomas, I can't really plan because we could be going out the front door and he needs a pad change or he has a seizure, and we're delayed. So I try not to plan, because when I do, it doesn't happen.
Looking back, there are times when I just completely blocked it out or compartmentalised what was going on to such a point where I was kind of numb. A year after we lost Alexander, and Thomas was developing his disabilities, I hit rock bottom. I couldn't really talk about what had happened because there was never the opportunity to talk about it. I couldn't really think about it on a higher plane because I didn't have those tools or ability to do that. I saw the doctor and was given some therapy sessions. On the grief journey there are various steps along the way; part of that is anger, part of that is acceptance. And that journey can be a week, a month, a year, a decade or a lifetime. I was just getting into therapy, and then it stopped. So that's when the anger started, because I'm thinking ‘look, I've asked for help and now I need some help’. A few years later, I had an opportunity to really change my career up, and a senior colleague told me that he’d heard about Thomas’s situation and whether I was ok and able to take on the work after what had happened. And I just thought ‘what?’ because I hadn't spoken about it. He found out through someone that knows me really well, and that was a bit of a shocker. I think my initial reaction was one of defence. Then, when I put some thought into it, I felt it must have been having an impact on me. I just hadn't really thought about it before.
As humans, we have ways of coping with extremely stressful situations. At that time in my life, I felt I could take on the world. I used to love the adrenaline of going on a roller coaster, free-abseiling off an aqueduct or doing white-water canoeing. Adrenaline for me, was something I was very familiar with, so I kind of felt prepared to deal with everything. What I didn't realise until 20 years later is that everyone has a limit. You've just got to find ways to manage that before you hit your limit. When I hit my lowest, I was depressed. At that time, they put me on Prozac, and I didn't get on with it at all. I just thought I don't want to be popping pills to try and deal with this. Over the course of that time I was struggling massively with my mental health and I would have huge bouts of depression. As I see it now, that's the human response to the pressure you're under.
I think the fact that most people haven’t experienced my situation is probably the hardest part of it.
You don't really have a choice. You can either walk away, or you just embrace it. Over the past 23 years, I've learned to learn to embrace it; and there are hard days, impossible days, and end-of-the-world days – but there are also some good days. Everything has its peaks and troughs. It also brings me back to why I started Eddy. There is a way forward on the darkest of days, and I want Eddy to help as many people as possible. If we can help each other to cope, grow, and learn, then we've done our job. It's giving people the tools they need through the stories of others.
I'm the kind of person that just wants to find a solution to whatever is presented to me, except I've learned not to do that with Thomas, and that's really hard. I can't fix Thomas. I can't get Thomas to speak, couldn't get him to eat, can't get him to understand, can't get him to stop walking out into the road – it’s a list as long as your arm. I can't fix Thomas, but I can fix me and I can control how I deal with and think about that.
Up until very recently, it had been 10 years since Thomas was in hospital with a serious issue. Just before Christmas 2021, Thomas and I were doing our Sunday routine, but when we came back home, he was sick in the hallway. He had a bit of a fever and, because of his grand mal nocturnal seizures, when he gets a temperature, I'm on red alert. But after a while his temperature went down. On Monday, his carer told us that they hadn’t been able to get Thomas up and about that afternoon. We couldn’t test him for covid because he has an oral aversion and we thought we’d probably do more harm than good. Then Tuesday came and his temperature still couldn't be controlled. On Wednesday, he was better for most of the day, but then it spiked again. Overnight we managed to control his temperature – we've got oxygen monitors and everything else; it's like a mini-ER in Thomas' bedroom. We're monitoring it and everything seems to be going well, but on Thursday, we couldn’t get his temperature down. We called 111 and they told us to take him to hospital. I suddenly noticed a rash had appeared on Thomas and I started to get worried it was meningitis. I spent the day in the hospital; they did bloods, and I was monitoring and controlling his temperature with paracetamol.
At 6pm, the consultant told me that his platelets and white cell count were too low, they thought he had sepsis and was showing signs of shutting down. I didn't see the signs of shutting down until I looked at his hands and I noticed they were all mottled. The consultant said, ‘I need to have a conversation with you – let's go outside’, and I said she could speak to me in front of Thomas. Whether he understood or not, I felt it was important that he heard the answer to the question she was going to ask – ‘do you want us to resuscitate him?’ I said, ‘of course, without a shadow of a doubt’, because the quality of his life is excellent. There's no way I would have said no. We then got put into Majors because Thomas is now an adult; he doesn't go to the fluffy bunnies of the children's ward, which is something I missed because that was nice! What then followed was a week in hospital, and he wanted to go home because he was compos mentis. Previously, when we had been in hospital because of something major he'd been unconscious or in a coma. This time he was aware, and it was really hard because he didn't understand that he needed to stay. His mum couldn't come in for the first day or so because of lockdown and, because of the rules in place, every time somebody came in, I had to justify why I was there. The nursing staff and doctors changed the whole time, so I was constantly explaining. And that's not their fault, it's just the system. By Sunday, we got into the final ward. We'd been on four wards, including acute assessment, which is like being in ICU but you're conscious, and the level of care is fantastic, but Thomas was on really strong antibiotics, which wasn't great for him. We then went to another ward, and were given the tiniest room. I've still not got a bed and I've been sitting in an upright chair the whole time, and I'm a lot older than when Thomas was first born. But I just had to focus. At that point Thomas decided that it was all getting too scary, and he didn't want to go to sleep because every time he did someone would come and prod or poke him. So while he didn't have understanding of what was going on, I think that was just a natural body response.
Across the week, I managed a few snoozes when his mum was able to come in, but I probably only got about five-hours’ sleep. Sepsis attacks your whole system, and for him it started with a chest infection, then it went to other places, and because it hits your immune system so viciously, it takes a while to recover. Six months down the line he's doing really well, but he has moments when he just can't stop crying for no reason, which Thomas doesn't usually do, but that’s lessening now. I think my advice to other parents that end up in that situation is that you have to have a routine, you have to keep water with you, you have to have some good food – not mountains of crisps, trying to avoid the sugar rushes and find a decent source of tea. That’s the most recent situation that occurred and obviously it impacted the whole family.
Before Thomas got sepsis, Sundays were starting to grate on me because we didn't have any care support on that day. During the week Thomas has care support, but it's not 24/7. So typically, I’ll get Thomas up and give him his breakfast, which is two bottles of milk and his anti-epilepsy medication. And then Anna, one of his lovely carers, turns up at 7am, gets him dressed and takes him to one of his day centres or waits for the next person to take him out for the day. He needs two people to take him out into the community if I’m not there, because he's a strong lad and he doesn't understand that he shouldn't walk into the road. On Saturdays he goes to a wonderful playcentre, and on Thursdays he goes to specialist blind charity centre, which is an amazing deaf-blind charity where they really understand Thomas. But on Sundays, we didn't have any support at all. We used to take him to church, but then, because of covid, the churches closed. Once the churches reopened, Thomas decided he didn't want to go there anymore. And how do I know? Well, one thing he can do is close the car door when you open it, so I take that as a sign!
So I started to resent Sundays, and the thing is, Thomas has chronic OCD, so it’s all about routine… that is, until he got sepsis. Since he’s come out of hospital, I truly embrace Sundays. I take Thomas to Canary Wharf, and it's fine. He smiles and I've now made friends with a couple of people running coffee carts. One of the ladies at the coffee bar has started to ask questions about Thomas or mentions that he’s looking happy today, and that's lovely. My experience is that whenever you talk about your children in a way that’s different to other people – i.e. you've got a disabled child, you've lost a child – it's a bit of a conversation stopper. Some people will smile, some will embrace you, and some will be empathetic. Some will say the wrong thing or just glaze over.
I do wish when we're at Canary Wharf, that we could just pop into Wagamama’s and sit and chill, and that I didn’t have to worry about Thomas throwing a shaker at a person – obviously not intentionally, it’s just because he's stuck in that sort of toddler casting stage! Of course, I could go on my own, or with my friends, but I’d just like us to do it – Thomas and me. And that's the unfair bit. Thomas won’t sit in a restaurant for more than a minute, or maybe two, except once on holiday. Normally, whenever we go to a restaurant with Thomas, he kicks off at some point and you've got to take him for a wander. But on one occasion I said to him, ‘can we just stay here so I can have a glass of wine and some beef stroganoff’. We know Thomas doesn't understand what we're saying, but I thought I'd give it a go. And he sat there, and it was amazing. Once in 23 years, but it’s a happy memory!
A lot of people stare at Thomas and I in the street, either because he's making a racket or he's just playing with his triangle – it's very rare that someone will speak to us. I give everyone a smile, and you get smiles back sometimes. When children stare it’s fine because they don't understand, unless there’s a child at school that's disabled, but you do get adults staring all the time. I've seen people almost walk into a door or a lamppost, and you just think ‘oh, come on - either acknowledge him, smile at him, or smile at me, but don't just stare’. I was in Waitrose a couple of weeks ago and this guy smiled at us. When we caught up with each other at the checkout, he asked if we were having a good day and I said, ‘we are, and I really appreciate you asking’ which I think is one of a handful of times we’ve been engaged like that on a basic human level. When people see others in the community with a disability it would be nice if they could just open the door or ask if they can help. Thomas throws his triangle sometimes and some people will pick it up, and that's quite sweet. Others won't. I think for me it's just about acknowledgement.
What would you say to other dads in a similar situation?
Eddy is built on taking each day at a time – the sun will still rise and set. You've got plenty of time to do something about the situation you're in and keep moving forward. It could be researching the condition that you've been dealt, or it could just be getting out of bed that morning. But you do have to be resilient, and you learn the resilience.
By the time Thomas was 10, we could have lost him another nine times. During his first seizure, a crash team from the Children's Acute Transport Service told us there was nothing else they could do for him and that we just needed to see how he reacted to what they had in the arterial line. When you’re in Resus, you're in a place that you've only ever seen on telly, experiencing the worst thing that you've seen on telly, and you’re having to make decisions. But you’ve just got to keep calm, because then you can think straight. Process it later, deal with what's happening at that moment. Don't get caught up in the in the turbulence of it and be nice to the people around you. You have to remember yourself in that place, and I think that's all I ever do: try to get the best out of everyone, because that helps the situation improve. In those tricky situations, you just have to keep going and find the energy to do that. You have to find the routine and keep yourself watered and fed. You make sure your child is looked after, you make sure their pads have been changed and you make sure the basics are in order.
My mum and dad had cancer five years ago; they're still with us thankfully. When my younger sister asked me to do a 10k run with her for Clatterbridge Cancer Centre that was enough of a motivation for me to want to do that. Before that, I would never have done it in a month of Sundays. So I had to do that run, I had no choice, and the only way I could do it was by keeping moving forwards. So when things get really bad, you just need to keep going. If you think of it like a valley, and the Psalmist talks about the Valley of the Shadow of Death, which could be real death or a dark place, you need to keep looking towards the light in this dark valley and head for it, because then you'll get to the end of the valley towards the light of the day.
Thomas has got his brain injury, his epilepsy and his feeding challenges – so there would always be something taking us back to hospital. I can't think what I was doing at those times apart from just surviving, but what I probably would have done at the time is spoken to a friend, tried to see someone, and just have people around me. And if I didn’t have those people, maybe I just found a podcast to listen to, a music track to put on, or a book to read – something to take your mind off that situation. When Thomas was in and out of Great Ormond Street, if he wasn't unconscious or strapped into machines, I would always take him to the chapel, where they have lots of teddy bears and a remembrance book. And the place used to calm him – it was very special for us and an opportunity for me to just pause.
Another thing I’ve learnt is that it's all relative. To one person, their problem might seem horrific because that's all they know. And that's okay, because it's all relative. I learned very quickly to understand that kind of relativity. It is what it is, and something might happen that’s massive – I walked down the aisle of a church holding my son's coffin, which is not what’s supposed to happen. That is not the circle of life and that is not what you signed up for when you thought about having a baby. A positive pregnancy test does not mean you're going to have the golden child; but you will be okay, because you are you. You have your unique skills, your unique ability to deal with whatever you need to deal with for your child. It doesn't matter how tough it is. You can get through it by taking one step at a time, by breathing, by letting your brain just work as it should, rather than letting it get to fever pitch. You need to keep going, and support and protect those around you. And if you've got more than one child, and one of your children has a disability or a condition or is going through something, you need to remember the other children, because when you're through the storm, you need to enjoy the sunlight together.
How did you come up with the idea for Eddy?
Eddy is something I've been thinking about for a very long time. About 10 years ago, I had the idea because I felt there was nowhere for dads like me to get information or insights. I like to listen to podcasts and read books - so it's natural for me to want to search that kind of thing out, but there was just nothing out there. Everything I did see was very staid, so I really wanted to create something that brought hope to people, and inspired them to carry on.
I think the people that move forward in life and are successful are the ones that learn from other people's experiences, to better their own experience and get something more than what they started with. If we don't talk about these experiences, we can't learn from each other. The great thing about Eddy is that there's the opportunity for somebody who's just experienced the same thing as me, or something similar, to find my story and realise at some point they’re going to laugh again and look forward to waking up again. Because those first few weeks and months are just horrendous. At the time, you keep waking up and wondering whether it’s a dream; whether it really happened. But you will get through it, as long as you keep moving.
One of the fundamental parts of Eddy is that you can share your story – and we really want as many stories as we can get. I'm really keen that we have a huge variety of stories, because once you're in that situation where you have a child that's got a disability, or you've lost a child, or you've got a child with significant mental health issues, you’re different to a lot of other dads out there. You are in the minority – and although that still might be hundreds of thousands of us – you don't experience fatherhood in the same way as somebody that doesn't have that. So when your kid’s kicking off or you're grieving your child, and you meet a dad who’s not dealing with that, there's a disconnect. So I want to create something that enables dads to connect and share, so that they can help each other.
For some of the dads on the podcast, it's the first time they've spoken about their experience. And if this is the first time they've told their story, and they've benefited from it, that’s fantastic. I was talking to a potential podcast guest yesterday and we shared our stories briefly. Afterwards, he dropped me a text and told me he really appreciated the conversation and that he was looking forward to picking up his son from school who’s got a number of disabilities and spending time with him. Another dad who appeared on the podcast goes to a thing called Talk Club where the group start by rating their feelings out of 10. We did his podcast interview in the carpark before he went in to that evening's meeting and he said he normally goes into his meetings feeling about a four or five, but after our podcast conversation, he felt like seven. So just talking about it clearly helps people. I'm not a therapist or the world's best conversationalist, but there must be something in that.
