Episode Transcript
Speaker 1 00:01:25 Oh gosh, where do I start? <laugh>? Yeah, I'm definitely a changed person since Eing came along. Yeah, we always wanted kids and then we were lucky enough to fall pregnant with ene. We didn't know whether it was a boy or a girl, so we just were positive thinking. And the pregnancy went really, really well. Everything was fantastic. She was so comfy, so cozy. And then, um, since the snow sign of movement, they decided to introduce her. But so from that day on, on the 18th of November, it was a bumpy road. The injunction was slow. She was, she was distressed. I pretty much spent 12 hours on a bed with a monitor. My birth plan went out the window completely. Um, it was a tough all time. And the nighttime was, uh, really difficult. They're so short staffed. The hospitals are, but everything up to them was fantastic.
Speaker 1 00:02:11 Honestly. We, we, we enjoyed everything but obviously the distress that of Le Laine. But she was healthy, she was fine. So the next morning since I was still there and no movement, they decided to do a C-section and it was emergency section. And at this stage I was like, yeah, whatever you have to do, it was a long all day. So I woke up and I was told I had a little girl and I just cried tears of joy cuz I really hoped for a little girl. And John wasn't with me. He was downstairs. So he was downstairs and he said, um, told him the girl's name was Abilene. I just cried upstairs on my own saying I've got my Abilene, you know, so he came up later and had a little video of her. So I was told her Apgar score was, was low and then she just needed a little bit of treatment and I was like, that's fine cuz like pre, you know, in your antenatal class class you could be told an Apgar score is low, could be low.
Speaker 1 00:02:56 So that's okay. Um, I'm looking at myself hooked up to oxygen and drips and everything. I was like, I'm not going anywhere. So that's fine. I actually, like in hindsight, I had time to recover in hospital because we were separated. She was born then Thursday morning. Yes. So the, I said the birth plan went out the window, but I was so relaxed, you know, honestly during this pregnancy it was, we were so happy. We looked forward to everything. I was as calm as could be. So when I heard she was in nicu, I was like, yeah, yeah, that's fine. They told you 98 class things can go wrong or whatever. So I picked her of her, saw a little video of her, I was told she's fine just to bring up her score. Then the Friday, I still hadn't seen her, but they were concerned about me.
Speaker 1 00:03:31 She had bounced back a little quicker. She was off the oxygen. So I ended up going to St. Vincent's. So the house, having met her, I spent eight hours in St. Vincent's. Um, so I had to ring the parents and say, eh, you can't come in today. So she had no little visitor. So I had John in there just doing what he could do. Not much. When the little baby's in the incubator, he was like, she looked like the healthiest baby in ni in nicu. Like she was fine. She was in an open box like so I didn't actually get to meet her till the Friday at merely midnight. And I would always treasure that memory. It was absolutely amazing. The first time I did skin to skin, it was just absolutely beautiful. So she was, she was recovering, there were nurses upstairs were looking after me and then I went down to see her the next day.
Speaker 1 00:04:09 So only saw her like about once a day. You just, you didn't really get time to see her much. Luckily ho Street now have little cameras so if the mom and baby are separated, you can actually keep an eye on your baby. And then I saw her on H D U and I even remember when the healthcare system's asking for clothes. I handed over clothes going, that's okay if somebody dresses my baby, you know, I'll have plenty of days to dress her. Still didn't bother me, completely relaxed. So we finally got her on this Sunday and it opened our wards. So then I was able to have my mom in and his mom in and stuff. So it was great that she finally met the grandparents and honestly those couple days relaxing or recovering after a C-section, I was like getting up, picking her up, no bother.
Speaker 1 00:04:46 So relaxed. It was a completely different experience to when I had Abigail. And um, we were fine. She got her heel prick test, she got all her usual bits of pieces, the hearing test and we left on Tuesday morning. Absolutely like thrilled. My mom came up and spent the day with us on the Wednesday cuz John was off, um, at work. And then we had Thursday the public health nurse came out, not a bothering her, did all the usuals, you know, did everything she was supposed to do. We had Friday, then we had Saturday we took her on our first little spin down to mom and dad. So we had a little bouncy chair for and she just relaxed and that slept. She was like clockwork. She slept four to five hours, she fed well everything, you were just up 45 minutes with her, you saw out and put her down.
Speaker 1 00:05:30 She was a dream. Like you could have asked for better. But then John had a bit of a head cold and she became a little sniffly. So we're like, I think we'll keep her in on Sunday. And then on Monday we were like, she's a bit cool but first time parents, a new baby. We just put a hat in her. We kept her cozy but she was still doing everything. She was still drinking, sleeping, everything like clockwork. So we still didn't worry about her. Then I was talking to mom and I said, she's due two week checkup, maybe we'll just move it to Tuesday. Like it was due the Thursday. So, but at 10 o'clock on the Monday night, um, John was changing her nappy and Alene didn't resist. She just laid back as if like whatever. And he's like, something's not right. Usually she used to kick her little legs or have a little moan.
Speaker 1 00:06:11 She's not, she's not giving out to me. And we looked at her and she was like kind of zagged like it was weird. So he ran down, we rang my mom and he went down to pick my mom up and bring her up. And while my ma while to my mom Sheila, she just flopped in my arms. I'm like trying to wake her up. She was just like a rag doll in my arms. Then my mom came in and she perked up. She heard my mom's voice. She perked up, she cuddled into mom. She was fine or appeared okay. But then we mom's like, yeah, no, bring the doctor in the morning and just bring it in for a checkup. And then she went pale and her lips went blue. And then we got out the ear Cter, which we never used before, wasn't working, wasn't registering, obviously she was cold.
Speaker 1 00:06:54 We were given the number for hollow streets. We rang them but the pediatrician didn't want us to bring her back in. So we said okay, we'll bring it to Tah. And we thought it was quicker to bring ourselves. So we did that. She perked up in the car, beautiful glossy lips. If I put lipstick on her, she was fine in the car, just sleeping again, you'd think there's nothing wrong with her. So we registered her details, he was parked the car and then we brought her in and we said, there's something not right. We don't know, they took at her office. And then I told ma'am, will you watch out for John? And then they were in the room and they picked up the red phone to call like the team in. And I said, I'm staying here, you watch out for John. Cause I couldn't think about the two of them.
Speaker 1 00:07:31 And I stayed there while they treated her and they did everything they could. And at first, like we were thinking, we just packed a quick bag, think would be just in hospital for a couple of days. We didn't think we'd packing a bag and coming home empty handed. And then at one o'clock, uh, coming into the first she was pronounced dead just after 1:00 AM we were just completely stunned. We couldn't believe it. So then we had to start making the phone calls. His parents came up, we were hatching home to my dad's and it's just surreal. You're just like going, how did we go from a baby who was stronger than me to a baby that is now lying cold in my arms? The nurses in tall were absolutely amazing. They took little like lock of our hair. They took hand prints, they took photographs for us.
Speaker 1 00:08:15 We had as much time as we wanted with her. But it just got to the point of pure fatigue that we said we had to go home. And it's amazing in those moments when you've had a, like you've always understood the bit like you do anything for your child or you'll just make decisions. Like I didn't want to take her home. I said, no, no, she came home alive. I can't bring her home dead so I don't wanna take her home. So Tala kindly kept her there and then the next morning we made our way to criminal hospital where the post-mortem was gonna happen. It's, it's just a bizarre, bizarre feeling. So we're left then with a, not even a two week old baby going, what happened? Like we were still only telling people she was born. Not many people had met her because it was all like, you know, new mom, I'm barely home from hospital.
Speaker 1 00:08:58 And people had respected that. And um, yeah, so we made this decision at four in the morning. Anybody who didn't see her alive would not see her dead. It's like this protection. And I didn't want them to have the only memory of her in the coff. So when I spent the next few days preparing for her funeral, which it happens way too quickly here and deciding what do you, what do you bury your newborn child in the one who was perfectly healthy Check, you know what you put in the basket, what you put in the coffin, like what do you do? So we got through all that as best we could. We told the public health nurse, as I said, she was fine with her. And then a week later we got a call from Tang. We were called up and we were told that she had herpes and we were like, what We never heard of this.
Speaker 1 00:09:42 We're like herpes, you know? And then it was like basically a cold. So, and we looked each other, we don't have cold sores. And then that's when they gave us the stats for America and the UK and Australia and you're like, Ooh, what about Ireland? We don't have any, well how did this happen? Like, you know, it's like with so many questions and no answers and why didn't they tell us cultures could be dangerous? Like, uh, why do you not know this? Because as a pregnant mom you're told loads of things to keep your yourself and baby and bumps safe. So we suddenly on walking back out to the carpark, we said we have to do something about this. Her death was not in vain. We are gonna do something for Abilene. And yeah, I spent my maternity leave creating her website, creating awareness and going on a strange journey.
Speaker 1 00:10:26 So um, yeah I've changed from be the completely positive, relaxed mom to <laugh>. I will do anything for my child and I'm doing this. And then slips going, getting pregnant again was a nerve-wracking experience. I was a different person pregnant now that I'm coming at the other side and that my second girl is six, we openly talk about death grief. She knows all about her sister. So yeah, I've learned, learned not to be afraid of death and grief. I learned how to talk about it and also learned how to tell people and raise awareness. Yes, she's taught me so much and I'm so, so grateful for that. Of course I absolutely miss her so much and I wish she could be here, but I know she's made me stronger in so many different ways. She's amazing.
Speaker 1 00:12:18 Absolutely a dream. I actually called her an angel because she was so good and then once she became an angel, people met my second daughter and then they'd be like going, oh she's an angel. And I was like, don't call her an angel. Call her a fairy, call her out anything. Call her whatever you want. Do not use the word angel for her. Yeah, it's like this protective word. It's like, no, no. Ely can have that one. It's really weird. You just get hooked on her words cuz even the day of the funeral I heard somebody saying she lost her baby. And immediately from being so relaxed this anger came to me, I said, she's not house keys, she's not a shoe. I did not lose her. She died. And I did not realize that was the start of me using the correct vocabulary to describe what happened.
Speaker 1 00:12:58 You know, I do use the hashtag baby loss because of her baby loss awareness cuz it covers all types of pregnancy loss and whatever, whatnot. But she died and you just wanna make it clear I didn't, you can lose a friendship, you can lose your house keys, you can lose your way, but you don't lose a child. And that's what I found really hard. Like you live without them and you've lost the memories that you're gonna make. You've lost those. So I think without realizing it, it's something I'd never ever thought about beforehand. It's the language around death and it's like even the thing where I've heard that somebody dies twice the first time when they die and the second time when their name is never mentioned. And that's where we want to keep Evan's name alive. We wanna keep our memory alive and we want to share her story cuz yes, she physically is dead but her legacy isn't.
Speaker 2 00:13:44 I know you've had no choice but to look at the face of grief and death straight on. A lot of people are obviously have a lot of fear around death and dying. And so I suppose the word loss is used to
Speaker 1 00:13:59 Soften the blow.
Speaker 2 00:14:00 Yeah, avoid it in a way. Yeah, yeah.
Speaker 1 00:14:03 People are afraid. And it's actually strangely it was a little kid next door who taught me to be strong. So she was only like a toddler. They taught us have a way of emphasizing one word in a sentence. So she told me, you and John were on tv and then she goes, you're a baby's dead. The father was embarrassed. And I said yes, she died. And that's how I've raised Abigail. She knows that her sister died. She knows her grandfather died during Covid. She knows there's a finality when she asks questions, we welcome them all but we don't want this. Like they're just gone somewhere. They've just disappeared. I'm just determined to use the correct language because I feel it. It gives more respect. Like you say somebody was born, you don't have a wishy-washy way of saying they come into the world. I know we're slightly digressing, but it's just something that I feel passionate about to make it clear, people are afraid to mention your daughter's name because they're afraid all at you.
Speaker 1 00:14:56 But by saying her name or any loved one's name, you're remembering them personally. I've been so open at work about it, so open with her website. But people are afraid. Like even when we were talking to children, I'd be like, oh, I remember when Alene used to do such and such because she was so, she was actually so smiley, so alert, so chatty. She even had little sounds, vocal sounds. My colleagues would go quiet. But if I said Abigail did such and such, they'd be like Oh you know, they can take it so differently. We should be allowed freely remember our children if we are comfortable to no matter what age they were. Yeah. And that's where I think society needs to allow us to adapt And you know like if you say your grandmother died at 88, they'd be like, oh God, you lived a great life.
Speaker 1 00:15:35 You know, and it's, it's taking a different attitude. But if baby dies they dunno where to look. And especially even on subsequent pregnancies, people go, oh is this your first? And you're like, no it's my second. Oh your grandson. And you're like, no actually I'm not because my first child died. And they're like, again, dunno where to look because that's the hardest thing that even society doesn't know how to help you with is your first time experience on your second born. I feel you need more support, whether it's the public health nurse, whether it's the hospital. And another thing that the public health nurse or the hospitals don't help you with is after your baby has died, nobody tells you what to do. Like your milk is still coming, you don't re, you don't know what to do. You're in slush shock, you're so busy organizing a funeral.
Speaker 1 00:16:14 Then you realize, well what am I doing here? There's lack of support around just the care of the mother and yet equally the father. A lot of people always remember the mother like in and the grief element the father has lost a lot as well cause they've only known the child for those number of days when the mother has carried the child for X number of months and the time the baby was around. There is a lot of lack of support around how to deal with your breast milk coming in, how to deal with your hormones. I think the hospital or just in general, we just need more support on that cuz I dunno how I muddle through it. Yeah, I honestly dunno how I muddled through it. That was hard. We did have first light because the social workers in tele hospital got us touch with first light. So we did start counseling that way and couple counseling that way, which was good. But there wasn't a lot of medical support or advice on how to move forward. So you got like the headspace counseling for your head and the emotions you're going through. But physically,
Speaker 2 00:17:04 No. Probably a very important role for the public health nurse. They need to come to the home and they need to support you through the physical changes that happen as they would if your baby was still alive.
Speaker 1 00:17:16 Yeah. Cuz your body thinks the baby's alive. Yeah. Or your hormones
Speaker 2 00:17:19 Do. Yeah. Engorgement and all of that. And as you said, you're, you're, you're not in a capacity really to be able to mind yourself. You know, when you're pregnant and all is well, you're researching how you do this, that and the other. You've got time. But when you're thrown into grief, it's not like you want to go and google what to do about engorged breasts when you're, it's, it's absolutely wrong that there isn't enough support there. I'm sorry to hear that. It's not, not okay. Can you tell me a little bit more about neonatal herpes and the symptoms? You know, obviously you had very little to go off with Evelyn. What have you learned since,
Speaker 1 00:17:58 Well since since Adeen died from, we obviously started researching and you can just pop in any Google search. You see it all around the world. Sadly, babies are affected, as you're probably aware, the last five days of pregnancy in the first five days of birth are the most critical time for a newborn. Whether I had contracted it in the last five days and I passed on her during delivery or during um, uh, laboring or then the first five days she contracted it from somebody. So in Evelyn's case it would've been contracted from somebody within the first five days of life because of her type of herpes. What it was, it was all completely internal and as I said, she was quite a vocal baby, but it, towards the end it sounded like she had a sore throat and that's where we were thinking she could have picked up a bit of a head cold from John.
Speaker 1 00:18:38 You know, it's November, it's wintertime bugs are around. It wasn't like, you know, covid time where there was masks and have sanitizer and people are cleaning everything. But yet again, she didn't have many visitors so it was actually her throat was really raspy and we thought this was quite unusual and that's where we're kind of going. She is under the weather, but when we actually got the postmortem results, yeah, pathologist, he was fantastic. We got to meet him. He talks through everything. He was not surprised when he knew he was doing a postmortem on a 12 day old baby. In his head it was like neonatal herpes, uh, mink strep or something else. I'm not sure a hundred percent sure. But he, his familiarity was, would be one of three things. So we were so totally shocked that he was not surprised it was that, but yet it wasn't a well-known thing.
Speaker 1 00:19:22 So we got the post mor results in our gp, kindly went through them with us. Her liver and esophagus were destroyed. It was completely internal. What we've since read cuz people get in touch with us when we first went live in 2016, people get in touch and old children would get it and they could get it like still young babies, they could get it cuz they started crashed. They could get it just cause somebody kissed them. And then as I said to you earlier, babies start exploring their faces and mouth. So it'll come out and kind of like a chick ppo rash kind of all over their face. Generally they broad hospital. But again the first thing is not always thought of as herpes, but if they, they do test it the baby, they may survive. We've heard from parents where the children have been brain damaged and they fear another outbreak of the virus in them because we dunno how much it's going to deteriorate the child.
Speaker 1 00:20:06 So we basically had the choice afterwards what we were gonna do about it. Um, obviously a lot of people told us to sue when we said why she's not here. We wanted people to learn from it. Obviously if she was here and she was brain damaged and she was in some strange capacity, yes it would be a different scenario. Our lives would've changed forever in a completely different way. And yes, we might've considered our options then, but we really wanted to raise awareness. We wanted people to know beforehand that you need to be careful. Like everybody knows there's a chance of miscarriage, there's a chance of stillbirth. But just to be careful with the babies, to be like with your visitors, with your hand hygiene, with kisses and said it can be taken from any source because Evelyn was distressed. She had the little, um, while she was still in the room, she had the little prick in her head.
Speaker 1 00:20:47 I'm not sure exactly what it's called, but she had the little test on her head, so we know that's another open source that she could have contracted with a slip up of hygiene or whatnot. So yeah, it was a secret, it's a secret illness, like it's a silent death. She was strong throughout at all, but we just didn't know that this little girl was quietly dying inside. And that's horrific as a parent not knowing you can fix it when you physically see something, you can treat it or you can give something. But um, she was a silent, quiet death.
Speaker 2 00:21:15 Abigail. Now obviously you've said you've spoken to her a lot about elene and I do think that children are amazingly accepting where I think that's a wonderful time to be honest and frank with them because it shows them that it's okay to talk about things as they actually are. Does she enjoy remembering that she had a big sister?
Speaker 1 00:21:41 She talks, yeah. Like she sometimes says, you love Evelyn more than me in your life. <laugh>, why do you say that? Well, she was first born <laugh>, but, or like she's looking for another sibling and she go, but I'm not a big sister and like, I know I have a sister but I can't blame her. You know, so she tries to phrase it around this way. But when her granddad died from Covid back in April, 2020, she said, well granted can cuddle elene. So she was very accepting of it and back then we couldn't see, you couldn't go to funerals. It was all, the whole ritual of funerals was changing covid. But she accepted in her stride and it was absolutely beautiful. So we do pop up to the graveyard and we see her sister's graveyard and she brings toys up, she brings plants and she goes, brings pictures and whatnot for her granddad.
Speaker 1 00:22:23 So she was very open and accepting about it. We never told her exactly where she died because we want to try to find this happy balance between her fearing that people die and you know, not knowing when somebody's gonna go on her. But we just said that she was very sick with an effect the doctors couldn't fix because we don't want her to have a fear of the going to hospital or the doctors or any system like that. So as she's older, we'll explain more what it was and how it came about. But for the moment she's just, she knows what's an infection and she's totally fine about talking about dying and death. Like even she was looking back at my pictures. So if she sees a baby picture, she's not actually sure is it her or her sister? And she'll ask, and then can I see my picture?
Speaker 1 00:22:58 So I bring up her pictures and I'm scrolling down the road and she goes, mommy, why do you have so many pictures of me as a baby? I'm, I'm grateful that I took a picture every day or practic every day of e And then before I got a chance to answer, she looked at me going, mommy, were you afraid I was going to die? And I turned around to her and I said, I'm not gonna lie to her. And I said, yes, it's, life is so, so precious and so short that I, I told her the truth but she, she basically answered it herself. Really, it's just for her to realize. But she, she does know people have a lot more numbers left to live, which she does know. People can die at different stages and for different reasons. So we just like to keep that open.
Speaker 1 00:23:33 I follow Caroline who's written a book we call, it's a continuing bond method so we can always continue having alene in our family. Like Abigail will say, you know, when this guy come comes for the census for the C S o, she would would say, he'd say How many people are in the house? She goes, well there's four in my family but there's three in my house. So I'm always so, so proud of her that she can do that or her back to skill photos and her preki photographs always included. Um, little babo galk, you know, so she knows we're a family of four but we live as a family of three. So it's amazing
Speaker 2 00:24:01 And that's so important for everyone. Yeah, everyone.
Speaker 1 00:24:04 Yeah.
Speaker 2 00:24:04 I recorded an episode as you know about kissing babies and the risks associated with it, particularly under three months of age when immune systems aren't fully developed. Yeah, it was about kind of three things. First, neonatal herpes as we're talking about today. Also ORs V as a real risk because of its complications with breathing and then diseases like hand, foot and mouth disease which are carried by lots of toddlers. Yes. So I've been doing a lot of work talking to lots of local radio stations about this, trying to increase awareness and I suppose just give parents confidence who maybe feel like or are being made feel like that they're being overly precious about their babies or that they are overprotective and just o t t. What would you say to those people?
Speaker 1 00:24:52 I think it's up to the parents to follow their good instinct. Especially like we've had three years of covid hand sanitizers and masks, but even prior to that as obviously like my Abigail six now. So we've been through that where strangers would come up, like literally when somebody was coming up to me, you're kind of wondering am I supposed to remember her as like she my mom's friend or something? But it was a complete stranger just wanting to have a goo at a baby. Oh my god. I had always a sanitizer, always had wipes. I was anxious bringing her places and as soon as Abigail got old enough to you know, play at a coffee table, coffee shop table or to put things out clean down the table, the hygiene in shops before Covid was absolutely appalling. So when Covid came in she got used to me always cleaning a coffee shop table, always cleaning her hands.
Speaker 1 00:25:31 I didn't want to do an O T T in it. Like I didn't necessarily was cleaned out my shopping or anything because she wasn't touching everything there. But it was like in a coffee shop or some home environment like that where she'd be touching the table, I would clean when strangers came up to us I would kind of try and hold her back. But certainly if they touched her I would clean her down even if it was just a baby wipe. So personally I was very anxious mother on Abigail. I was very calm on Abilene. But once knowing how she died or what the results of her death with the herpes I was a lot more cautious and a lot more careful with Abigail and, but also like it took me a long time to let her go to any play center. It took me a long time to do that.
Speaker 1 00:26:07 I know you can't wrap your kids up in cotton woo and I know you have to find the happy boundary of letting them out. But I think a parent just really needs to have to decide what's important for them Like today. Yeah a lot of people would be more careful because there's a lot more awareness like you doing your article and the different illnesses. That could be good cuz I, I do even remember when Abigail got hand foot in mouth and bringing her to A and e Inland that just, it freaked me out. It had me on a completely other level. We were soon reassured it wasn't her piece but it was scary to see her break out in a rash y we did not know what it was. I don't think parents have been O O T T and if somebody wants to say there'd been O t t, they can just tell tell 'em to back away like or they can just tell 'em this is my decision. We were that extra bit cautious and that was how we felt safe. But we weren't passing around like a
Speaker 2 00:26:50 Toy. Look, there is no one listening today that isn't gonna understand your resistance and your fears after your experience. And I suppose what I am aiming to do is to just for people to know that they have a right to be comfortable and they have a right to be confident that their baby is safe. Your baby only gets their first set of vaccines at two months and by three months they've kind of established some bit of an immune system. For neonatal herpes, the greatest risk is under four weeks. There is no benefit of exposing children and letting them. Oh sure. It's good for their immune system. They have to get a few bits of things. No that happens later in life. That happens when you know you're an older child and a toddler and you're more robust and you actually have an immune system that's capable of developing antibodies. But when it's not physically possible, it's just not right for babies under two to three months. Like caution is needed And really that's all I suppose we're trying to say here today and to emphasize you are doing absolutely amazing work. Remembering Evelyn and people should really look at your website and El Puta link in the show notes. Can you tell me a little bit about your campaign and how it started and where you've gotten to today?
Speaker 1 00:28:08 Okay. Um, well as I six months maternity leave I suddenly learned how to create a website. We had some fantastic people supporting us in Hollis Street. My doctor at the time Mary Higgins put appoint us and right direct direction. We met a lovely neologist, um, Dr. John Murphy and we started working with Dr. Killian Degas. And how we actually realized there was a problem is we got the idea to test her heel prick card and her heel prick card was tested and they said there was no herpes in it. And I was like, that's bizarre cuz like even when we had the meeting with Holl Street, they were kind of saying it could have been a visitor and we had technology could have been a visitor, but due to those strange circumstances, nobody touched her till Saturday. And she was born on a Thursday. I got access to her file and then I looked at the dates of the results for the first heel break test card she'd had to one I was present with cuz I remember warming up her tiny little foot for it and one I wasn't present.
Speaker 1 00:29:02 So they attest to the first card. So then I request to Achillion could we actually get the second card tested? And that showed she actually had the positive, the positive diagnosis of herpes before we left the hospital. So that gave us the grounds. Then we knew that it had happened in within Holl Street, so now we could kind of work further with it. So we met with Karina Butler in Children's Hospital. We were so blessed to be given the right context, the right people to actually help us create the website and to oversee it between us. Saint mentioned the pathologist and Michael McDermott, Karina Butler, Kelly Diason and then the hospital staff within HO Street. They want to know how they could help us. What Hotter Street did immediately after, um, died and they realized it was an issue. They started to stock cold sores cream and cold sore plasters in the pharmacy up to then they hadn't, um, stocked them.
Speaker 1 00:29:52 And I imagine then it was up to the staff members just to make sure they had them on in their locker or whatever. So they did start to do that, but we wanted more. We wanted it to be said in the ANTONINA classes. So we spoke to the midwife who gave ours and she said she would, but you wouldn't mention our name. And we were like, no, no, we want her website shared. So we had to encourage that. We also asked for um, like a notification the way you'd see give up smoking during your pregnancy or a little note when you're in the writing room to be seen. You'd see all different things to stay, stay healthy, you know, look after diabetes or look after your diet. We were hoping a sign could go up and buy a cold source. It was a bit of a compromise and they put up a poster with different affections.
Speaker 1 00:30:29 So it wasn't quite what we looked for, but it was there. And in fairness, they have actually got her website linked on their website and then we asked for on the visitor section. So if a visitors come to the hospital, they know to be careful. The next thing we got in touch with was the National Women Infant Health Program. We met up with them and they produced a learning notice that that was signed off by the master of Hollow Street as well. And that was sent to all maternity units because we didn't have the resources to reach out to the maternity units. So we wanted to try and get somewhere with that as well. So we got that signed off on. And the next thing we did was with Dr. Ron and Glenn, he helped us reach with Minister Harris when he was a minister for health.
Speaker 1 00:31:08 And we got neonatal herpes founding as a notifiable disease. Now to get the last two pushes with the HSE and with the Minister Harris, we actually had to have an inquest, but an inquest was never called for Alene itself herself like, and we were surprised at that because it was a sudden death. So we actually decided to push for the inquest and we had that on Halloween 2018. And then subsequently we met in December, 2018, we met with Minister Harris. So we're absolutely delighted that pre covid we managed to hit our targets or we managed to hit what really would make a difference on the day-to-day lives of women. I don't know if all 19 maternity units are giving out the information. We were hoping to do a bit more work with them. And also what Mr. Harris helped us to do was we were struggling to get in touch with the gp, um, network, the GPS college, um, as we wanted to bring the news closer to home, closer to the community cuz our GP didn't realize it was an issue and a lot of people didn't know it was a problem.
Speaker 1 00:32:05 So we did manage to have an October, 2019, uh, talk in Galway at their A G M or their conference with the student doctors. So we did manage to do that and we were hoping to do more, but Covid has kind of gotten in the way. So we definitely are always open to bring her awareness to share her story and to bring it anywhere in the community that would help people, whether it's the antenatal, whether it's the postnatal with the public health nurses. But, um, yeah, I can't believe, I can't believe what we have done. And T three were great. They had us on a couple times, we've been on news talk, we've been on rte. It's, it was absolute coverage we got for, it was amazing. But you're still meeting people that are, are like, what? That can happen. And you're like, you've got a small baby. Do they not tell you when you're an antenatal class? So we, we want to see if that learning note has been pushed further. We want, we would love to keep going, but we're kind of stuck at the moment. We're not sure where to go next, but uh, hopefully we can keep raising awareness.
Speaker 2 00:32:55 I know that a lot of midwives and nurses listen to this podcast and we will share it as much as PO possible.
Speaker 1 00:33:04 Thank you. Thank you.
Speaker 2 00:33:05 I think even the fact that you've explained the risks to a large group of parents who listen to this show and follow me on Instagram is potentially more lives being saved there. And that is to you John and Evelyn and Abigail. We're gonna throw her in. She gets, she's gonna get credit too. Yeah.
Speaker 1 00:33:25 <laugh>, she's doing some work. All right. She's
Speaker 2 00:33:28 Awesome. Yeah. Her work is so important because keeping Evelyn's memory alive and remembering that you will always be a family of four, albeit grieving one, it's hugely important. And keeping her story alive keeps awareness going and it's such a wonderful and hard thing to do, to talk about your own baby's death. But if it can prevent anyone else suffering from this rare condition a hundred percent, then you know, it's, it's just remarkable. Thank you so, so much for joining me today. And as I said, I'll pop all the links in the notes.
Speaker 1 00:34:05 Thank you so much, Sheena. I do really appreciate the opportunity cuz it's, it's been a long time since we've publicly done anything, so it's, it's great to keep your memory alive and keep it going. Thank you so much.
