We talk to Casey, mum to 6 year old Alfie, about their experience of HIE.
We talk to Casey, mum to 6 year old Alfie, about their experience of HIE.
Hello everyone and welcome back again to Peeps podcast. This is our second episode. And I'm really happy it's Andrea here. Happy to be here with Sarah again as my co-host who's the Peeps founder. Hi Sarah.
Sarah:Hello. Nice to be
Andrea:back. Great to have you back and great to be here. We've got Casey here with us today as well. And Sarah, you know, Casey let me let you introduce her.
Sarah:Yeah, so we're really pleased, Casey, that you've been able to join us today. We've known each other for a little while now, which is lovely. Virtually, so the benefits of online and social media, I feel like I know Casey. Casey will introduce herself in a minute. She's mum to the gorgeous Alfie, a real advocate for HIE and raising awareness and has been a peep supporter. So yeah, Casey, over to you if you'd like to tell us a
Casey:little bit about yourself. Well, thank you for Letting me come on. Like Sarah said, I've got my Alfie. He's six. He is my HIE child. And he's got an older sister, my, my daughter, obviously, Charlotte. She's nine. Yes, she was nine the other day. Yeah. And we've got my husband as well. And that's our, that's our unit. That's our, that's our family.
Andrea:Oh, lovely. Well listen, thanks so much for coming on and, and sharing your story with everyone, cuz I think we all find it helpful. Both those of us who've been through HIE and also people who are trying to support their family and friends who have been as well to hear stories and to try and understand. So tell us a bit more about what happened in your h i e story, Casey? Yep. Okay,
Casey:so May 2017, I had Alfie, my pregnancy had been perfectly fine, nothing to note, no issues I was allowed to use the midwife unit it was all going as far as I was aware, it was all going very, very well and he was born and everything just it just went very, very downhill, very fast. He was born in, they call it an unexpectedly poor condition. They spent, a lot of them, that first sort of time is, it's blurry for me as in I know what happened, but just produced a human. So, it's all a bit blurry. But he was, I know they spent like 22 minutes or something resuscitating him. And and then he was taken to St. Thomas's that night. And. We didn't go with him. They were keeping me in for the night and My husband would have had to, he wouldn't have been allowed near him. So we took a decision where he would stay with me so that at the very least we were together. Which is hard and it's not necessarily a decision that everybody would agree with. But he wasn't going to get anywhere near Alfie. They were going to be surrounding him, working on him, plugging him into, I don't know, a dozen machines, and it was better for us to be together, supporting each other. And we were up there like the next morning, we got the call from the hospital to say, he's arrived and he's fine. Within reason, he's fine, obviously. He was taken in what I refer to as the NICU on wheels. The the Thames retrieval unit took him and we were up there the next day and the consultant sat us down and that was the first time we heard the letters HIE and we were like, excuse me, never heard of it before, ever, not, I mean, I'd like to think I'm a relatively intelligent, well informed, educated person, never came across it in my life. And yeah, he spent 72 hours cooled. He was ventilated for three weeks, and we were home the day before he turned six weeks old, which is quite quick for some of, in comparison to some of the HIE babies. Slower, obviously, compared to some of those where it's a bit less severe, but Yeah. Six, six long weeks. And he's he now has, he's got cerebral palsy grade four to five. He's fed through a peg. Yeah. But he's, he's amazing.
Andrea:Oh, it's such a tough time. And those decisions that you have to take in those early days are so difficult. In my situation, it was the same My husband stayed with me in the same way, we luckily didn't have to go to a different hospital, but either way he couldn't go to the NICU and he stayed with me. It's such a hard thing. And you don't, you're not prepared already for any of those decisions that you have to make in the moment, are you?
Sarah:Yeah it was exactly the same for us and you make decisions and I think whatever decision you make you probably feel guilty about or wonder whether was it the right and there's never rights and wrongs are there and I think you can only do what's best and It probably felt like the longest night ever before you got to go and see him. But I think, yeah, it's, it's a really difficult situation for people to be in. I think whatever people choose to do, it's, it's got to be right for them, like you said.
Andrea:Yeah, absolutely. But he's now six. So you've come six, six, six, six years and you know. I say six long years because that's me, that's me putting my, yeah, those, those early years definitely. Certainly for me felt, felt really long. I, I always remember age age one, my son, everybody would say, Oh, it's gone so quickly. Can you believe it's been a year? And I was like, yes, it feels like the longest year of my life. I always remember that. So but. You must know so many things now, Casey, that you didn't know before, For those people who are starting out in the journey, who've got much younger children, are there things that you wish you'd known earlier on, that you now know now, that you could share?
Casey:I wish I'd known of its existence, because like I said, it was, it was completely alien, I didn't know anything. Obviously there's a lot of Googling involved, and, but actually I found our, the nurses in the NICU, they were the most incredible angels, and they were so, and Like, the consultant, when she sat us down and she said, like, You know, I'm, I don't want to upset anyone, she's, you know, she didn't need to say the words, there's a good chance he might pass. We knew that would happen, like, she didn't need to say that, we, we just knew it. And she would, but she, you know, she kind of described it as kind of his brain, because he's a newborn and therefore your brain is still developing, and he's still so little, so it's kind of like roadworks in the way, and finding different ways around things, and she was incredible, the consultant that we saw, and she was there for... I think pretty much his entire time in NICU. I mean, there was like three or four of them interchanging. But yes, the same one wish I'd known the HIE forum existed because I actually found out about that. So I think it was. 2018, the day before Peeps first anniversary, I think it might have been, and they were in the paper Sarah and Heidi and Steve, they were in the paper, and I was like, oh my god, that was the first time I'd seen anything about HIE other than, Our life. And so like I joined on Facebook and yeah and asking for help is really important as well. Knowing what help exists is good because you don't know so asking for it is. Good. The nurses in the NICU, they pointed us towards funding for travel because we were traveling up. We had Charlotte, so we wanted to keep her routine. That little girl saved us more than you can imagine. So rather than stay, we wanted to keep her routine because she had like three days of childcare already that was like a quarter to eight to a quarter to six. So we didn't want to mess. Mess her around. So we had funding help with travel. They gave us some vouchers for the restaurant in the hospital as well. Like you don't know that these things exist, so if you are struggling they actually also arranged for us to see a counselor on the nicu. Well obviously not in the ward, but while he was in, arranged for a counselor to come see us if we wanted to. If you are religious, they could arrange for. A priest, or the equivalent, to to come visit. Yeah. If you feel you would benefit from that at all But yeah, knowing to ask for help. Like I know peeps now do the packs. And I know they worked was it with Bliss, was it? Because a lot of the NICU stuff was very premature focused, and Alfie, actually, he wasn't. He was four days late. And a lot of NICU stuff I was looking into was all premature based. And I'm like, but this doesn't apply to me, this doesn't apply to Alfie. So knowing more about full term NICU. He looked ridiculous, by the way. He was 8 pound 5. There was a baby next to him who was born at 24 weeks. He looked ridiculous. he called him the bouncer at NICU because he was so big compared to some of the little, the little ones.
Andrea:Yeah, it's, it is really hard, isn't it? With, when you see them in comparison and I feel like, you know, I certainly felt like within the NICU community of parents, we didn't quite fit.
Casey:There were people being brought round for tours of the NICU, whereas a scan had picked up a heart defect or something that there's a chance the baby might need NICU or might need extra help when they're born. And those parents had the chance to look around and. So it wouldn't be so scary for them. I mean, it's obviously going to be terrifying. But, I mean, the first time we walked into the NICU was the first time. And Alfie's there with all his tubes and his wires and beeping and medicines and, I don't know EEGs on his head and... Stuff coming out of his umbilical cord because they use that for IV lines and obviously he was being called as well So he was like wrapped up like a mummy and these special like cooling bandages and it's a lot, isn't it? It's a lot seeing, seeing them like that. It's a lot.
Sarah:It's so unexpected, isn't it? You know, like you said no one wants to be NICU and it's really difficult whatever people's circumstances are But I think so many HIE babies are full term, not all of them, but there's a large proportion that are. And I think, certainly for me, there's a, looking back now, I was naive thinking we were fine. We'd got to 40 weeks and... The
Casey:car seat was in. The cot was up, the little one in the bedroom, he was going to come home, Charlotte was going to have her brother, end of story. And by now he would have been, I don't know, football training. In all honesty though, I do think he'd have had me on A& E more from throwing himself off climbing frames. And that's the kind of boy he is. I think he... would have been one of those children. But yeah, you, you, there's that, is it a phrase? It's like grieving for the child you thought you were going to have and it's hard.
Andrea:Yeah, it's really tough. Where have you got help from, Casey, in terms of family, friends, professionals, I'm sure there's people who are in that position who are going to be listening to these podcasts. What has helped you?
Casey:In terms of family and friends, I mean, so many of them wish they could do more. And I mean, my parents aren't old parents. They are. in the second half of their 50s. But, you know, physically, Alfie, it's tough. I mean, he's six and he is, he's a tall boy. And obviously you've got the weight and then you've got obviously because he can't, he doesn't like support his own sitting and stuff. So it's, it's kind of feels like, heavier weight, doesn't it? When they, when they can't support themselves. So practical physical help is hard, but I would say as friends or family, if you show willing to help and willing to learn, for example, feeding Alfie feels quite complicated to lots of people. It's actually not. He has, I mean, Before we did it, it would have felt extremely alien and extremely difficult, but if you've got someone whose child is tube fed, and, you know, they deserve a break, we need a break. Whether it's going to the cinema, going for a walk, and their only opportunity is lunchtime, but they can't because their tube fed child needs it. Offer to learn. It's, you know. I know I would be more than willing to walk people through making him, because he's on a blended diet, so he has what we have anyway. And if they don't have what we have, it's usually some sort of special formula or milk. And the setup, be willing to learn. That's, that's a really, really helpful thing. Practical support is fantastic,. The hoist isn't too difficult to use, really. It's up and down. It's obviously just teaching people to make sure the right bits of the sling are on the right colours and stuff like that. And yeah, show willing to help in terms of the equipment. Feeding, administering medication, if not drawing it up, because that might be too far for some people, but like, I don't know about you, but at Alfie's Meds we do 24 hours in advance, so some people do a whole week in advance but you know, be willing to like have the schedule or learn, yeah, learn how to do it. Learn how to help. it's amazing if you could, like my mum is absolutely terrified that she's gonna do something wrong. Absolutely petrified. She never has and she's been doing it for six years now, but she maintains her state of terrified every time she does it. But, you know, she wants to help and she does help and it's amazing.
Andrea:I think so many people are frightened, aren't they? The challenge that I've seen is people thinking that somehow because we're Parents of children with additional needs that somehow we just knew how to do it, but nobody else can learn. And I think I think when when somebody realizes that actually not there's not a parent in this situation who had any special qualification or, or in order to be able to deal with these things and actually everybody can learn so that I think, you know, you talking about the willingness I think is so, so important and so amazing when when that happens. So you've also obviously got in touch with PEEPS and you've talked about the Facebook group being really helpful and the HIE forum being really helpful. Have you accessed any other services or help from PEEPS?
Casey:So over the years we've, we've done the things, we get the, some of the lovely things are the surprise things like Mother's Day, Father's Day, just those little things that are just, someone's thinking of you, which are really lovely. And early COVID times, my my cousin, she nominated me for the, it was like a care package thing. And that was really lovely. But in terms of more practical for Alfie, we used some peeps funding to get a Tomato sitter so we can take that to other places or on holiday. So he's just got somewhere to be other than his chair.
Andrea:And what a tomato sitter is for those
Casey:who don't know. Oh, sorry. I just, you forget that everybody automatically knows every word you're saying. So it's like it's all wipe clean, which is really handy because Alfie has really bad reflux. It's under control, but he has his days. It's like a. It's, it's like a solid but cushioned, comfy, molded seat with a lap belt and a chest harness. It's great on the sofa because he can, you know, he can come sit on the sofa with us and be involved and it's lovely. That's great.
Andrea:With thinking about You and how you cope with all the extra work and things that are part of being mum of a child who had an HIE event. we talked a lot about thinking about self care. Have you got a tip for everyone? Can you share a self
Casey:care tip? Yep, I like singing extremely badly with my headphones in. I have a, not headphones when I'm driving, obviously in driving it's just the windows are down and the volume's up. I got a very funny look from an older lady in the car park yesterday as I was Driving to find a space and Dr. Dre, M f d o, double G, and she sort of looked at me, just say, I cannot believe it. That's quite fun. But yeah, when I'm cleaning, cooking, or decorating headphones in mindless tasks like sorting Charlotte's Arts and Crafts, I was doing that yesterday to distract myself a little bit. Yeah, podcasts in the bath. Podcasts in the bath are always good because sometimes you just, you don't have the brain capacity to read. I love reading. I do. And if I read, I tend to read what I call like my easy cheesy reading. It's just silly romance novel stuff. But I love it. But if you just don't have the brain capacity to read, comedy podcasts are always good. Yeah. Or just singing really badly. You feel a lot better.
Sarah:I love that. I might have to try the singing. I would also be a very bad singer. But in the
Casey:last one we took... It's all fine if you know you're bad. There's no pressure to perform well. If you know you're bad, you're not like, Oh, I don't sound so great. If you know you're bad, you don't care. I
Sarah:love that. So just embrace
Casey:it. Just go for it. If you know that you can hold a note every now and again, you're going to have this worry like, oh, that probably didn't sound so good. But no, I know I'm bad. I don't care.
Andrea:That's such a good stress release singing. I love it.
Casey:No one else does, but I enjoy it. Alfie doesn't always enjoy it.
Andrea:Before we wrap up, is there any final advice that you'd give other HIE parents or anybody else? You've already shared so much advice, but what's, what's, I guess, what's your number one thing to someone's maybe starting out in this journey?
Casey:Ask for help. Do not be scared or afraid to ask for help because you will need it. And whether that's, it sounds silly, but you know, people talk about they have the newborn and people say, Oh, I'll cook you a meal. Or, a watch for an hour so you can have a sleep. That, that, that kind of newborn stuff is still, it's still relevant, because, I mean, it's currently quite settled for Alfie sleeping for a long time was really bad. And what I wouldn't have given for someone to come and cook the dinner for us all for one night, or order us a takeaway, or, dear, but ask for help. But the newborn time, food, sleep, if you can gift them to somebody or ask for those from somebody don't be, don't be scared to ask for it because people will want to help. And if they can't necessarily do the more practical things with equipment and feeding, they may be able to do something more like that. So if they can, a lot of people would rather do something than nothing. And if that's something may seem trivial. But it's going to help you ask for it, whether that's, even if it's like meeting you for coffee because you feel so lonely sometimes, it's really, really hard. And before we moved two days before COVID shut the world down over here we were stuck in a second floor two bedroom flat with no lift. Alfie was... Nearly three years old. It's very long. It was really, really, really, really lonely, and I was suffering a lot. So even just being there, don't abandon, don't, don't leave them to themselves. It's not, it's not good for them. Don't, don't leave them alone. Be there in any way that you can.
Andrea:It's so important. And they said, I think that's great advice and really good advice as well to ask. I think for those people listening, he can help to, I think that's great. But I think sometimes everyone is worried, busy, scared to get to offer sometimes. And I think, you know, but if, if, if you, if you ask, I think. Hopefully, many more people are going to feel ready to do some of those, like you say, practical things that that can make such a big difference. So
Casey:that's fantastic. Yeah, like Charlotte is obviously very good with um, she'll feed him sometimes, obviously supervise, she's only nine. There have been incidents, there have been messes. But my cousin is a paediatric nurse. So when she's here, it's lovely because she basically just takes over. I don't have to teach or nothing. I don't have to. That's great. But not everyone obviously has a pediatric nurse on hand, but she's kind of teaching. So her daughter is aware. She gets involved with the feeding. She's the same age as Alfie, actually. She's six. We were pregnant at the same time, and she was born four months later. And she was actually, my cousin was working at the Evelina when Alfie was in the NICU in St. Thomas building. So when she was on a night shift, because we were coming home every night, she was going over. to visit him for us on her break. So, he, she, he had someone. So obviously her help is a lot more, it can be a lot more medically practical. But yeah, no. It's offer anything you can. It's great. Whether, like, Alfie really likes stories. If it's reading him a story, it's great. It just gives me five minutes. As long as you're making an idiot of yourself while you're reading that story, he Friends with him. He will, he has Friends on a loop on Netflix. Adores it. Knows when his favourite funny bits are coming, will start laughing ahead of time. Shouts at you when it comes up, are you still watching? Because we had to go to Netflix from the telly because he started shouting at the adverts. Oh my goodness. Yeah, he's very clever. I'm very demanding.
Sarah:I'm coming having a friend's afternoon with Alfie, I tell
Casey:you, that sounds brilliant. I agree with him, the outfits are, the outfits, the adverts are annoying, but they're every 10 minutes on the telly. That's not time to go and do something. So you have, you resort to Netflix and then a few episodes in it goes, are you still watching? And he's like, you know, come and fix the telly, come and fix it. And, uh, away it goes. So if I'm cooking dinner, that's really handy. Although, it usually happens when I've got, like, the raw chicken on my hands. It's usually... It's
Andrea:always the way. Oh, it's been so great talking to you, Casey. Thank you we, we like to end if we can celebrating our heroes and it makes a lot of sense today for us to be celebrating Alfie. So over to you really, what, what, what would you like to celebrate about Alfie today before we finish?
Casey:His personality, I mean, he's been a bit grumpy of late, but generally when he's a happy boy, I mean. He can be so affectionate. He gives kisses, but he licks like a dog, which I think at the time he was learning to give kisses, my mum and dad got a dog. So we are convinced, it was like two years ago, so we are convinced that that's why, and he will like poke out like lick you as a kiss. Which is, and he'll blow kisses, but he's not like hand out, it's more like on, on his, he'll lick his fist kind of thing, but it's, he'll blow kisses and he'll give kisses, and if you're giving him a cuddle or leaning, or if you're holding him like to your chest sometimes, which it's a bit hard now he's six, but you know, the arm will go round you and just like, oh, sometimes it's by accident, but you enjoy it anyway. But he can be lovely and affectionate and The giggle, and he's so ticklish. But yeah, all of that side of him, when he's in his good moods, is, it's just, I mean, they all get grumpy. And it's, and they can't, depending on, obviously, how they're affected, they can't always tell you, which makes it so hard. If they can't even tell you that they're grumpy, or can't tell you why, and you can't fix it. But no, those moments, those times when it's just, he's, Lovely, he's so cheeky, unbelievably cheeky, he's spoil rotten, absolutely spoil. If you're, me and his dad can barely have a conversation. We hugged the other day and he kicked off in a temper tantrum until he forced out tears. Because we had a hug without him, he's could be an absolute nightmare, but in the best way. I mean, he's, he's brilliant. He's so funny. And so, he loves being told off. Like if he, if he dropped something and you'll be like, Alfie, I hope you didn't drop that on the floor. And it will set him off and he'll be giggling and it's wonderful. And he's, this, this is what I mean earlier where I said, I think if he could, he would be one of those children who throws himself off a climbing frame for laughs. Get down from there, it's eight feet high. Watch this. Like, he would, his personality, it's amazing. He's great.
Andrea:He sounds absolutely wonderful. I'd love to meet him. Well, listen, thank you so much for spending the time today. I think it's so important that we're able to share our stories and it's so great to have you on as our first parent coming on to share your story. And I hope it's been really helpful for those who've joined us to listen. Sarah, anything from you before we finish off today?
Sarah:Just to say, yeah, a big thank you for sharing. I think we're trying to show that stories can be different, but there are also lots of things in common. And just to reiterate what you'd encourage people to do, please, if anyone does feel that like they might need a little bit of help to reach out for it, wherever that is, or whatever that might look like. And because, yeah, there's lots of support out there and people don't have to be on their own, do they?
Andrea:No, absolutely. Well, it has been really, really wonderful to meet you, Casey. Thanks for coming and sharing. And I'll talk about him all
Casey:day.
Andrea:That's fantastic. And we'll see. We will hopefully hear from anybody who's listening, please comment and share and like the podcast. And we're looking forward to hearing from you and if anybody else is interested in coming on to the podcast and sharing their story. We're also really, looking and keen to come and speak to as many people as we possibly can. So thanks everyone for listening. It's been a pleasure, Casey. Thank you. Thank you. And thanks Sarah as well. Thank you. See you soon. Thanks everyone. Bye bye.