NTSP Specials (Season 2) Brendan and Shevonne Part 1

This Special Episode is a fascinating interview with Shevonne, the inspirational mum of Henry. This is Part 1 of 4 episodes. 

Brendan and Shevonne discuss the journey that her family have been on with their little boy who has had a tracheostomy from a young age. Thanks to the tenacity and resilience of Shevonne and her family, Henry leads an incredibly active life, despite needing to take a ventilator with him wherever he goes.  

Shevonne has been incredibly open about the challenges they faced and shares how they navigated the complexities of the health and social care system, care packages, funding and access to schools. Essential listening for anyone in a similar situation, or for health and social care staff who are tasked with trying to help.

--------------

The UK National Tracheostomy Safety Project (NTSP) is committed to providing education, information and resources to improve patient safety and the patient experience for those with tracheostomies and laryngectomies. All of our resources are housed on our website www.tracheostomy.org.uk, accessed by over 30,000 visitors each month from around the world.

This is the only podcast to bring you literature reviews, hot topic discussions and interviews with healthcare staff, patients and families.

Our goal is to improve the safety and quality of care for patients with tracheostomies and laryngectomies through education. We work closely with patients, families and healthcare professionals to develop new resources to improve care. We’ve collaborated with key stakeholders in tracheostomy care since 2009, and developed freely accessible resources, supported by online learning developed with the UK Department of Health. We’ve worked with the Global Tracheostomy Collaborative since 2012 to improve care for patients and their families everywhere.

We are funded by grants, donations and in partnership with medical device companies through unrestricted awards. This podcast series is supported by unrestricted education funding from the Atos Learning Institute. The funding supports the professional production of the podcasts and videos, and the medical device companies that support us do not have any creative influence over the content that we record. All of our work is undertaken by volunteer healthcare staff, patients and their families. 

Most of our content is supported by videos. You can access our training videos and resources for Basic Care, Emergency Care and Vocalisation & Swallowing. Download and print bedhead signs and emergency algorithms from our resources.

Transcript

SPEAKER_02 0:07

Hello and welcome to this special edition of Tracky Talk. I'm delighted to be uh joined by Siobon, who is over uh on the whole side of the United Kingdom. And uh Siobon has got a really interesting story to tell us about uh her life with her son Henry. So I'll hand straight over to Siobon and just get her to tell a little bit about herself and uh what's happened uh in her family over the last uh eight years.

SPEAKER_00 0:34

Hi. Yeah, as you said, I'm Siobhan. So um I've got an eight-year-old now called Henry, and he is tracheostomy ventilated 24 hours a day. Um currently he's having a little bit of time on a speaking valve, so he does get time to sort of transition and move a little bit, but he's completely mobile, and that is the thing about him that he's uh a neurotypical child. He's got no, you know, memory problems, no cognitive impairments. He is just a normal eight-year-old, but he's got very complex health needs. So he's actually his tricky part about him is that he's so active and mobile, and he has been hitting all these developmental milestones from being a child, so um that's been one of the hardest things to manage. We spent a long time in hospital, is uh when he was born, uh, 15 months um of really life-saving treatment for the first nine of those, and then five months of getting him ready to come home on a tracheostomy and ventilator. And my husband uh and we have another little boy as well, George, who's for?

SPEAKER_02 1:37

Yeah, I was gonna say, I mean, you've got a pretty full-on busy family life right now, haven't you? But I wonder, would you mind if we just went back to uh when Henry was born? Because uh, you know, and I know uh it was a pretty sort of traumatic period. So uh thank you for agreeing to sort of talk about it. But I think it'll really help people who are perhaps in the same position uh you were in. So would you mind just taking us through um some of the headlines about what happened when Henry was first born?

SPEAKER_00 2:07

Yeah, of course. Um so we didn't know that there was gonna be any problems upon birth. Um that's what it says in the medical information, actually, but we did have a bit of a tricky pregnancy um where we didn't actually know if he was gonna make it or not, um, which it's listed in medical information as an unremarkable pregnancy, but it definitely wasn't. Um we thought he had um a posterior urethral valve blockage um and potentially might not have developed uh in utera, and we didn't know if he was gonna actually make it. So when he did come out crying, we were absolutely over the moon. So that was the best feeling I think I'd had in life at that point of just wow, he's here, and I was so elated. But very quickly we realised there is something wrong, and it's gonna be more than an ultrasound that's needed to check this because his breathing wasn't quite right, um, and he had no opening at his bottom, so he couldn't feed. Um, so that was that was the first sort of 10 minutes, which was quite traumatic actually. But really, that was just the beginning of a of a long journey. So we ended up being uh in patients then in the neonative intensive care unit and having a colostomy formed so he could eat and have some output. Um, and then we did go home for a few days, but then we went back into hospital because he he wasn't quite right. Three days of being at home, we really weren't comfortable. Um, and we basically hopped, skipped, jumped by the time he was five weeks old and ended up at Great Army Street in London, um, where he yeah, it was found he had a very rare airway condition, which is called um long segmented tracheal stenosis with a left pulmonary artery sling. And that means the trachea, it was meant to be six to eight millimetres in diameter and it was only 1.5 millimetres, and it was fixed cartilage rings, so it would never have grown with him. So as he was putting on weight feeding at home, he was actually starting to suffocate more. Hence, as we were at home those few days, he was really struggling.

SPEAKER_02 4:04

I was just going to say that that was your sort of maternal spider sense that sort of picked that up. You were telling me before that that you you knew something wasn't quite right.

SPEAKER_00 4:12

Yeah, it's the mother's instinct. Until you really are a mum, you don't really appreciate what that is. I can give you so many stories about mother's instinct and how I knew that Henry wasn't right. Um, and you've always a first-time mum that you know you're anxious about things, and certainly the professionals, the midwives and health visits that came to see us at home were like, Oh, you know, you're a first-time mum, you spent time in unit intensive care, and you've had this surgery, and you're going to be anxious. But what was more deep-rooted was than that was my instinct that I knew something wasn't right. Um, and I think I should say I'm an occupational therapist as well. So, in terms of healthcare, I'm I'm not shy to that that side of things, and and I'm quite assertive, and and that's really helped me because it wasn't just an instinct, it was my professional knowledge as well. I thought, no, no, something not right. I don't care how long we've been in the unit of intensive care, there's something not right. And um, by the time we got to London at five weeks of age, I honestly believe if we hadn't have got there and that diagnosis wasn't picked up by an amazing gastric surgeon at Hull who said, I discharged you, ho. And I said, Oh, we're back, we're on oxygen. Why? And she said, We need to repeat this CT, we need to repeat this. And she said, We're looking for this condition, very rare. And in 40 years, there's one other child that had it, and then Henry II, and it was a midline disorder, and um and so he had that operation at Great Ormond Street. But I honestly think he would have died of cot death if we'd have had another day at home, and that's what would have been the the outcome. He'd have not woken up, you know, he's laid flat, unable to breathe, suffocating because of this physical um airway issue. And the left pulmonary artery is wrapped around the windpipe, so actually everything on the left-hand side, you know, of his lungs, of his vascular system and his respiratory system on the left doesn't do very much. So we know now that lung does about less than 15% of what he should do. And really, you know, Great Arm Street are phenomenal in terms of what the research they do, and they managed to save him with the you know, the slide tracheoplasty procedure that they they that they devised and then he's you know had, and that saved his life. But they don't know why he needs a ventilator, they don't know why he still at eight years of age needs a ventilator because you can live with one lung and he's got one good lung, but what he needs is the treatment of a ventilator, which is damaging that one good lung and the 15% left lung that doesn't really do anything but it occupies a space. But you know what? He has the best quality of life, and that's what's really important to me and my husband and all other family around us is that he's living his life and he is having the best time, and he's you know, he's he's at school, he's mainstream, he's so clever, and he's cheeky and he gets in trouble for talking. And I think that's a really important point there as well. That when he had his um slide tracheoplasty procedure at Great Arm Street at five weeks of age, one of the vocal cords was um paralyzed from the surgery because it's microscopic, so he lost his voice. So when he came round from that surgery and we were in intensive care, we had a baby that was crying but completely silent. That is that is a really strange thing to see, and family really struggled with that, and and I did, but he was my boy, and I stepped up to you know being that that mum who was like, I'm you, it's okay. But what made it worse is every time he cried, if he was exturbated from an intensive care ventilator and he was on CPAP, non-invasive, every time he would cry, he would need to be reinstated because his airway was obviously it had been repaired, but his breathing was dynamic and it would just all shut down because his secondary condition, which he still struggles with, now his tracheobronchomalasia, so his floppy airways of his um windpipe and and the tubes that go into lungs, the bronchus, they are floppy. So when he cried, then he'd just be on and off a ventilator. So the tracheal service down there added up when he was six months of age, he'd been fully ventilated and sedated for three months of his life, which is a crazy amount of time to be in an intensive care unit, not really responding, you know, basically look like you're asleep and having new breathing managed for you. And then when he did wake up and he started to cry, and he was exturbated from that ventilator onto CPAC, and we were like, wow, you know, he's he's there, he's smiling, or he's looking at us, oh you know, Henry, and then he'd he'd start to cry, no noise would come out, and he'd go straight back on a ventilator because he just couldn't breathe. And it was just brutal, brutal nine months of of that. And they tried everything, you know, they tried airway stenting, which is really pioneering, and but you know what? The the even though it was all life-saving treatment, one of the one of the it wasn't the best or the easiest thing, but one of the decisions that we had to make, we weren't really decisions because they were all life-saving treatments. So it wasn't ever, oh, if we do this, there's a 50% chance of this. It was like if we don't do this, he won't live. So we we had the decisions taken out of our hands. So actually, that was a little bit easier that we were just like, he has to have it or he's not going to survive. So we just had multiple repeated conversations like that for nine months of trying to get him safe um with his breathing. But all that time we were so well looked after and and part of the the decision making with the MDT at Great Ormond Street that we really felt we were parenting him as well as him being cared for. And that was that was really important to us, really important to us.

SPEAKER_02 9:42

Can you remember when the prospect of a tracheostomy was first discussed?

SPEAKER_00 9:48

Yeah, so as I said, we tried the airway stenting, which we were hoping that would scaffold the trachea and then open up everything below, and then that didn't happen. So then they put a stent in the bronchus and hoped that would open the left side up, but that caused us more problems, and he was needing nasal pharyngeal suction in at this point. So the catheter down the nose four times a day with respiratory physio, and he was crying silently, and it was a really tough again. And I could tell, again, having that professional background myself, this isn't a long-term possibility to get him home like this. You know, you can be at home on CPAP, I knew that, but 24 hours a day, that's not safe, unstable airway. Again, you're learning, you become institutionalized because you're in hospital, and we were, you know, me and my husband were living and breathing it all, and we're when we're educated people, and and I knew this isn't long term, this isn't possible to continue. I think they're gonna offer something else, and I think it's gonna be tracheostomy because it can stabilize your airway and give you a safe airway. So I remember speaking to the physio that came in the fourth time that day and said, What do you have for kids put on tracheostomy for secretion management? And she sort of looked at me and she said, Someone said something to you. I said, No, can you? Is that what happened? Is that a reason? She said, Well, yeah. Yeah, I knew from that point when the physio said someone said something to you that that was a discussion that was being had. And I think living and breathing and and being part of the ward rounds um in intensive care there, we were very much aware of exactly what was happening day to day. So when the next ward round came, I sort of said, you know, are we considering tracheostomy? And they all, you know, looked, it could be. That is one thing we're we're discussing. And I said, Well, I think that's a good idea. I said, because we can't continue like this, you know, he's already got one damaged vocal cord, he's in intensive care, you know, we're approaching the nine-month mark, and we're having, you know, all the bowel surgeries, so we were ticking off other things, but he's not got a quality of life living like this. And I think it's worth mentioning, you know, in terms of eating and feeding, like Henry at eight years of old, eight years of age now, has a normal diet, so he's not gastrostomy-fed. He eats chicken dinners, burgers, pasta, he loves pasta. All of that is because when we were in intensive care, again, being part of the MDT, I said, you know, this is really foreign. He's not talking, he's not got a voice, we've got no like feedback loop framed here himself. So his tongue's not doing what he should be doing developmentally. He's sedated a lot on a ventilator when he is awake. We need to really push and help him with this. And he's not seeing any of us eating, we're in intensive care. So he's not seeing me eat, he's not seeing me with a knife and fork, he's not seeing me drinking anything. There's just a one bedside nurse who's got a bottle. I said, What's he learning from around him when he is awake? Can we have speech and language up? Can we talk about what we can do with that? And and they were very much like, we wouldn't normally do that. I said, But yeah, but we need to address it, we need to think about it if we're going to be here for months, which we were. And so they said, Yeah, let's get a speech and language therapist up to talk to Siobon. And so we did, and we made a plan that if we put chocolate mousse just on his lips, with the CPAP, you know, on his nose, that he it would bring his tongue forward just to get a little taste.

SPEAKER_02 13:11

And okay.

SPEAKER_00 13:13

And that beginning, and that's what we did. So we had special permission, we were in a cubicle, so we had very confined, obviously, in terms of affection control, but that meant as parents, we got to do those normal things of a bit of messy play with some chocolate mousse, you know, when he was set up um in a high chair with all the you know, tubing and hanging off him and central lines and things, but we were still trying to parent him, and that beginning of trying something that you wouldn't normally try in intensive care gave or gave him that experience of taste. Because I was of this opinion that if he dies tomorrow, I want him to be able to have tasted chocolate mousse or banana custard, or you know, have the joy of food, have something go to his brain that says, Wow, that's tasty. And I don't want him to miss out on all those early early developmental things and the early intervention work and what that can do for you long term. And so, again, if you can't do an intensive care and take risks, when can you do it? So, again, being part of the team and then listening to us and giving that rationale means that now, and don't get me wrong, it's not like he did that so he can eat now. There was a lot of steps on the way, and feeding has been one of the toughest things as a mother. That instinct that you have to feed your child. Again, you know, I was I was breastfeeding Henry intermittently at the beginning. I was I was expressing milk with the the pumps in hospital, trying to maintain my flow, thinking I know that's the best start for him. Like, we don't know what he's gonna be able to do, but I want to be able to provide that if I can. So then you go on to we, you know, you we're not gonna be able to take your breast milk, you know. That's a blow as a mother of something I really wanted to do, and that hit me, it hit me hard, and I didn't really understand why, but it's the instinct to feed that was inert in me. So then I was on this trajectory of I need to give him food, I need to provide that for him. So the journey once we came home and of just trying to get him to eat, you know, it's every day, it's three meals a day, and it's snacks, and it and that's what all your your friends talk about. We've got kids, oh, what's feeding like? What are they eating? You know, that again was another brutal kind of thing to overcome emotionally. Um, but thankfully we were able to do that at the beginning, which has given him that opportunity now to be so social. He just sits in in his um dinner hall now in long tables with all his friends, and he'll just go, like, today it's fish and chips, and he had to be at a born ears there yesterday. Took a pack lunch the day before. And as a parent, anybody that has a child that's peg fed, you have to think about the logistics of taking food with you, nutritional input, like hydration medication, it's constant. Whereas for us, yes, he's tracheostomy ventilated, so there's a lot of equipment that goes with that, but all the food thing is solved. He eats orally, he takes his medications orally, and he does not bat an eyelid at it, he doesn't ever turn his nose up, like is he's you know, like I'm not having that. He's like, medication, Henry, three or four different ones straight in, no question. And he would just had such a positive approach to eating, feeding, and you know, his voice, he's got his voice back now. He got that at about two and a half to three years of age, where he started with noises, but before that we were using Macathon, um, which was phenomenal, and he had such a great communication ability because of his Macathon use. Um, like I said, he's a he's a clever kid. Um, so yeah, so in going back to the tracheostomy and knowing he was gonna have one before they'd even said it to me, kind of helped me prepare myself. My husband found that harder because it's another surgery. Um, however, his little face was gonna start to become deformed because constant, you know, non-invasive ventilation on your little squashy face, and we couldn't we didn't actually know what Henry looked like. That sounds absurd.

SPEAKER_02 17:02

No, I know exactly what you mean. Yeah, it's we didn't know what it looked like.

SPEAKER_00 17:07

He's always had something on his face, so we used to have you know just a little CPAP break of a few minutes, which was really risky because his area could cut, you know, close up at any point and in respiratory rest and back a crash bell and all that. But just seeing his little face was just phenomenal, and we used to absolutely just wait for the CPAC breaks because we were like, oh yeah, that's what he looks like. But the point of having the trackie was we'd been through so much of uh unpredictability day in, day out, day in, day out. Is he gonna be intubated and be safe? Is it you know, is it gonna be the end? You know, it just meant that we could have him safe and the difference it made the difference it made to him was night and day different because once he had the trackie and it was delivered here, and he always had an uncuffed trackie, he never had a cuff trackie because he's an airway kid, they didn't want to irritate the airway. But once they did, him he was laid in in bed at nine months of age, and he had the most energy out of any time of his whole life. He was laid in bed kicking and and playing, you know. You get those um arched playmats, and we used to take the arched bit off and hang it over his bed so he could like reach up and kick and things, and he was kicking it like billiard, like absolutely, you know, like a pro footballer. And we were like, wow, because he had the energy, because all of that, the all of the ventilation he was getting, so all the airway support he was getting was being delivered. So he had all the energy that he should have had really from the beginning, and that for us as parents, just seeing a nor a child respond normally was wonderful. Yeah, and that was the tracheostomy, yeah, and the ventilation.

SPEAKER_02 18:58

So in my world, looking after adult patients, you know, we uh tracheostomy always seems like a really big deal for patients who've been, you know, in the ICU for usually two or three weeks. Um, but once you've had a tracheostomy, you know, it takes all that stuff out of the mouth. Uh, we can usually give people a shave, and you know, suddenly the next day they look amazing, and then you can start that recovery process. And so I I think I hear this quite a lot that a tracheostomy it is a big deal and it takes you know a lot of thought about, you know, okay, what's what's this gonna impact, you know, for for the short term or or or for the long term. But I hear lots of stories like you just described there, where actually the tracheostomy is transformative in a good way, and like you're saying there, it enables some positive things that the you know the suction is a lot easier, he's portable, he's actually getting all the ventilation he needs to get, and it gives you, if you like, a route out, you know, you can start to say, okay, now we're on the journey to try and get home.

SPEAKER_01 19:58

So that was part one of that fascinating interview with Siobon about the life of a young son when he was stuck in hospital having all these procedures, and ended up being discharged with a tracheostomy. If you want to find out what happens next, as Henry gets a little bit bigger and Siobon accesses services in our community and start to think about what's going to happen when Henry needs to go to school, then there's three more parts to this interview. If you look on our website or wherever you get your podcast from, you can find the subsequent parts there. As ever, everything you've heard is our own opinion and doesn't represent any of the organisations for which we work. You can find out lots more information for parents, families, and carers on our website, which is tracheostomy.org.uk. Please like, follow, or comment on our social media channels. I look forward to seeing you soon. Bye for now.