#384 - Finding Your Voice After Prematurity: A Conversation with Mandy Daly

Hello friends 👋

In this episode, Mandy Daly shares her profound journey as a NICU parent and her advocacy work through the Irish Neonatal Health Alliance (INHA). She discusses the emotional challenges faced by parents of preterm infants, the importance of family-centered care, and the need for systemic changes in neonatal healthcare. Mandy emphasizes the significance of building support networks, empowering families through education, and the impact of lived experiences in shaping healthcare policies. The conversation highlights the collaborative efforts required to improve outcomes for families navigating the complexities of neonatal care.

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Short Bio: Mandy is a medical and disability underwriter and a parent of a preterm infant born in 2006. Since that time she has been advocating in the neonatal space and in 2013 she founded  the collaborative multi-stakeholder platform, The Irish Neonatal Health Alliance (www.inha.ie).

She has extensive experiential and deep sectoral knowledge and specialises in the areas of Advocacy, Education and Research. Her many successes in the field include effecting several neonatal and paediatric health system reviews, developing and delivering curricula and continued education to medical, nursing and allied health professional students, mentoring PhD students, serving on the parent advisory board of the European Foundation For The Care Of Newborn Infants and the NIDCAP Federation International Board since 2012 and working as patient collaborator on several national and international research studies. Mandy was a chair committee member of group that developed the European Standards of Care For Newborn health and has published papers in several journals including the British Medical Journal, The Lancet, The Journal of Obstetrics and Gynaecology and Trials. She is also a member of the HRB NEPTuNE Steering Committee.

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The transcript of today's episode can be found below 👇

Ben Courchia (00:00.738)

Good morning everybody, welcome back to the Incubator Podcast. We are back this Sunday morning for a special interview. Daphna, how are you doing this morning?

Daphna Yasova Barbeau (00:09.595)

I'm doing well buddy, how are you?

Ben Courchia (00:11.256)

Doing very good. I'm very happy to welcome to the show today, Mandy Daly. Mandy, good morning and welcome to the Incubator podcast.

Mandy Daly (00:18.829)

Good morning guys, thank you for having me.

Ben Courchia (00:21.506)

It's a pleasure to have you with us. For the people who are not familiar with who you are, you are a former NICU parent. You are the parent of a preterm infant born in 2006. And since then, you've been advocating in the neonatal space and you founded the collaborative multi-stakeholder platform called the Irish Neonatal Health Alliance, the INHA. People can learn more about the Alliance at www.inha.ie. Mandy, thank you so much for coming on the podcast and for all the work that you do. My first question for you this morning is if you could maybe briefly tell us a little bit about what your introduction to the NICU looks like and what was it like in 2006 for you?

Mandy Daly (01:11.225)

Thanks Ben. So as you said, yes, I did have my daughter at the end of week 25 of my pregnancy in 2006. I had had quite a turbulent pregnancy. Premature birth wasn't on the cards, but unfortunately it happened following a placental abruption. The birth that I had thought I was going to have didn't happen. It was a very scary time. The delivery room was very, very packed with people who all seemed to have a task and I didn't know what was going on. It wasn't sure that my daughter was going to survive. She was delivered by cesarean section and she was non-responsive and there was a lot of hard work happened in those first nine minutes to get life into her lungs and she was quickly removed to the neonatal unit. So I didn't get to do what most parents do. I didn't get that moment of holding my baby, looking at her, smelling her, kissing her and somebody else did all the things that I had hoped I would be doing. And it always sticks with me that maybe those first few moments of life were not filled with love or happiness or comfort and perhaps it was quite a painful introduction to the world.

It was 24 hours before I had the opportunity to see her. She was incredibly unwell. She was on life support. I didn't know what she looked like when I went to see her. I was brought by one of the midwives and it was really sad to enter a room with 10 different babies knowing that you had delivered one 24 hours previously but not sure who she was and it was just looking around to see which baby didn't have a mom at the incubator, that must be my baby, is a bit surreal. It's an environment that none of us wants to think about and typically none of us really knows it exists and it really shifts the parent role. I mean for me premature birth flipped everything, flipped all my dreams, my hopes, my expectations. There were people taking over the task of parenting.

And I didn't know where I stood. I didn't know what my role was in that neonatal unit. I knew things were very difficult for my child. They were very keen to give her a name. And that always to me smacks of, we'd like her to be named before she passes away. And she was quite unwell. I didn't get to hold her for four weeks. It was very difficult. It was difficult recovering from cesarean section to be discharged from hospital without your baby. And you're going home after day five and you're leaving a part of you in the care of strangers. And you're just taking part of your heart and saying, please take care of her and, you know, ring me if anything is happening and you go home. But a part stays there. There's a part of you thinking, I should be here all the time. I should be at this baby's bedside, but you're not allowed. You know, you have to go home and go home to an empty house and you try to sleep and it doesn't happen and you're constantly ringing the neonatal unit just asking how she is because you're afraid they'll miss something.

You go to sleep, you pump milk every three hours, your body doesn't even know you've had a baby, you're attached to a hospital-grade breast pump, something you never thought existed and all you can do is pump milk and make those phone calls and we spent 14 hours of every day for three months at her cotside. We traveled two hours to and from the unit every day to be there. You still didn't know what you were doing. You still didn't feel part of that unit. You still felt like a visitor. You would come to the door that was locked to the unit. You would request entry by pressing the bell. You never felt part of the team. And I think for me, that is something that I always come back onto because I didn't feel like her parent. Nobody asked me to be her parent. I was just somebody who came to visit every day. And it's really, it's one of those things that family-centered care involving families from the outside, which really is critical to parenting I think is critical to attachment is critical to recovering from having a preterm birth and you do this you do this for three long months you do it every day you come in and even small things like they've moved her incubator overnight and they haven't told you when you arrive and you don't see the same incubator.

We catastrophize. Parents just, you know, whether it's completely rational, but that's where we are. That's the world we live in. We look to the baby. It's not our baby. She must have died. They've forgotten to ring me to let me know totally out of the normal. But little things like that, little things like moving or going to a different room, even when she eventually went to the step-down unit. I want to be told because otherwise I think you've done something and my baby has passed away.

Amelia was really unwell. She spent a lot of her first four weeks kind of hovering on the precipice of life and death. We were never at any time told she was going to make it. She had several occasions where she was resuscitated in front of our eyes. She was obviously tube fed all the time. She had suspected NEC (necrotizing enterocolitis). She went from infection to infection. It was just such a precarious time. And as a person, I work in healthcare. And for all the years I've worked there, I've never seen anything erode me as a person as much as those early weeks of motherhood when I didn't feel like a mom. And I watched my baby get sicker and sicker.

She did eventually pull through after three months. It was a very long three months and it was certainly what, you know, they call it a roller coaster, but that's actually a kind description. There's nothing that can possibly emulate what it's like. But what I did see was I saw through the eyes of a healthcare professional, a system that really wasn't meeting my needs as a parent. And I kind of put a lot of these observations to one side so that by the time we got to the end of our journey, I kind of thought, okay, my baby is still very young. Well after three months, she's going home and she's still having apneic episodes. She's forgetting to breathe and I'm resuscitating her. There must be other parents in the same situation.

And whilst I was in the unit, I befriended a lot of parents because they are your new family. They are the ones who are walking the journey with you and they truly understand every emotion that you're experiencing. And they are the ones who get your tears. They're the ones who get your irrational thought processes. And they are the ones who pick you up when you've had a really bad day. And we kind of ended up having a little sort of an, I'm going to say, an unofficial support group while I was in the neonatal unit, because anybody outside did not know. The world continues to run. And then there's the neonatal unit, which is like, it just kind of sits at the precipice of nothing. It's hard to understand that life can still happen in the real world and all these little babies are so sick and may not make it and there are so many families touched by it.

So by the end of our time in the neonatal unit we were going home but there was no support in the community whatsoever. You were simply discharged with a whole bunch of medical terms that your baby was going home with and you were told to come to all these hospital appointments and you still didn't feel part of that conversation about what's happened, how we've all recovered and what the future is going to look like. I didn't know what the future was going to look like. I'm kind of glad now in hindsight I didn't because going home was very lonely and having to explain yourself to the real world about the vulnerability of these children, the different ways in which we need to parent them and protect them really met with a lot of challenges from people who'd never met a premature baby before and that little support network that I had built up in the hospital, for want of a better word, followed me home and just got bigger and bigger.

So I was in the community and then these moms who were still in the unit were saying, oh this is Mandy Daly, like here's her phone number, her email address, she's been here a long time, get in touch and it just got bigger and bigger to the point where I kind of felt okay there is nothing for these families and this is clearly demonstrating for me that there's nothing for them and there were so many things that could have been better for our babies and our families in the unit. Maybe there was something I could do and I guess we continued to offer that support to parents in the community because literally there was no general practitioner, there was no public health nurse, there was no local pharmacy who at that time had the education or the training to manage families in our situations.

I was bringing a baby home who was developing an oral aversion. She was developing sensory processing disorder. She would go on to be ultimately diagnosed with a whole bunch of conditions, but I was experiencing all the symptoms very very very early on and nobody could put a name on them but I knew it was not normal so in the home environment Amelia would never sleep she would find it very difficult to calm herself to sleep and then when she would fall asleep she'd wake up screaming after two hours and we'd have to spend the night sitting upright with her for her to return to sleep.

Things that I didn't know as a parent were babies need sleep, their brain needs sleep to develop. If their sleep patterns are interfered with or they don't have complete sleep cycles, they have poorer developmental outcomes that are different from term babies. Lots of stuff that I could see happening in my life I didn't have explanations for or an understanding of so I was kind of collating all of these real world experiences and wondering how am I going to translate this into something that other families don't have to relive the trauma that we were living in our home and make it easier for them and all of these little lived experiences eventually translated into the organization that I run, the Irish Neonatal Health Alliance.

Again, it only started as a support mechanism, but over the years it has blossomed because by living with a preterm baby, nobody has written that book and every preterm baby is slightly different. Some of them will have developmental problems or emotional problems or behavioral problems, but we're all told when we leave the neonatal unit they will catch up with their peers by age two. And that is the biggest lie that was told to me and to all the other families we work with. They all say to us, we waited two years for the baby to be normal, to catch up. And for many of us that never happens and we have a very different trajectory. Our babies' lives are very different from term babies. They have eating issues. They have sleep issues.

Now I realized that my baby's sleep issue was related to her, she had bronchopulmonary dysplasia (BPD) because she was on ventilator for so long. I didn't know that babies with BPD really struggle to sleep on their back. But we want baby to sleep on their back for safety reasons. So there are lots of little nuances that don't work for us as families. And I think we gathered all of those then and tried to collate them into some sort of a resource that families could use and it would benefit them going forward.

Ben Courchia (11:53.894)

And what's interesting about that, Mandy, is the fact that I am not actually familiar with the hospital or the NICU that you guys stayed at, but all the things you are describing resonate deeply with the experiences that I have seen and had as a provider in many NICUs in the United States, for example, and in different parts of the US. So I think these are almost universal experiences that probably are not isolated to you and the people who shared the NICU where you are in Ireland and who are going through the NICU experience around the globe. I wanted to maybe ask you a little bit about what kind of energy did it take for you to go from an experience that was bittersweet in the sense that your child survived, did come home, but that you felt needed a significant level of improvement. How do you translate that frustration into positive energy that says, all right, let me just try to organize my thoughts, organize my resources, and maybe provide help to others.

Mandy Daly (13:06.391)

Well, I guess it was purely selfish. I found myself in a community with no support and I was encountering challenges that I knew there were no interventions to assist us with. And I guess I did it because I wanted my baby to have a better life. I knew that our neonatal landscape was fragmented. I knew that we had hospitals who were all providing amazing care, but not doing it on a standardized basis. So I was hearing stories from other families telling me this happened here and that, I know it wasn't reflected in other units.

So I actually went to, I'm going to say the guy at the head of the pyramid and said, OK, you know me, you've seen me in the unit and I think there is a huge amount of good work happening, but it's happening in silos. Is there something we can do? To be fair, we did need financial investment to look at the entire landscape, we realized that if we didn't know what was happening, we couldn't do anything about it. So we took a step back. We did a landscape mapping exercise where we got some industry funding, a really small amount. And we went out to every neonatal healthcare professional in our country and asked them what was working and what wasn't working and where they saw the gaps. And we brought that together in a benchmarking report, which had never been done in Ireland, didn't cost a lot of money.

But what it did is it provided us with a blueprint for where we needed to bring the landscape now into the future. There were five big things that we had seen that weren't working and without these working, we were never going to fix the system. So we were looking at a system change. And maybe it's me as an individual. I wasn't prepared to sit back and be told there's nothing happening, nothing's going to change. I had done so much to get my baby to discharge, she had demonstrated so much strength and defied the odds in getting to month four alive. I kind of felt I owed it to her and to the amazing staff that we were working with. Like they work so hard but they were not being supported. And this benchmarking report is still, it still forms the basis for much of the work that we do.

We didn't have a transport service that operated 24 hours a day. Our ambulance only worked from 9am to 5pm. So if a baby is born after 5 and needs transferring into a tertiary unit, it didn't happen until the next day. These were like things where I was going, how come? How come these things aren't working? And to be fair, the staff are going, it's money, you know, and maybe the Department of Health just simply just doesn't know. So then we went and said, OK, well, if they don't know, let's go talk to them.

So we were looking at ways of fixing these five areas that we felt were a problem. So the main thing was basically the transport. We need babies to get into where they need to get the best care. We spoke to the government and they went, you mean it's not happening? And you're like, no, it's not. And that was it. I mean, maybe I'm just incredibly fortunate and lucky in the way things panned out. But they immediately went, yes, of course, this makes perfect sense. Look at the money we're going to save if these babies don't have a stroke in the first six hours and they're transferred out into a tertiary unit.

Ben Courchia (16:21.538)

Yeah, the cost-saving analysis of timely interventions is, yeah, it's a non-starter.

Mandy Daly (16:24.681)

Absolutely, absolutely. And again, like we didn't have national neonatal guidelines. I couldn't have thought that in 2006, somebody hadn't thought it was a good idea. Again, I guess people are just working within siloed units and there was nobody really in command. And what we did, we said, OK, the INHA is a neutral platform. You all come to this platform and work together. And then there's no issue over any power struggles, we're all doing this for the same outcomes and within three years we had neonatal guidelines published. Simple things that would make a huge difference to how a system operated.

Daphna Yasova Barbeau (17:04.305)

Mandy, I think what you've done is really tremendous. And before we get into the pillars of what the INHA is doing, I recognize that there are just some parents that are just empowered and called to the work. And like you said, I don't know if that's something innate they have before they get into the NICU coupled with this experience. I also recognize it can be therapeutic for families to participate in this type of truly advocacy and policy change. And I guess I have two questions. One, how can we serve to empower families to be connected and into the system? And two, how can we make sure that for the families that it will be therapeutic that they have this opportunity?

Mandy Daly (17:57.689)

For me it was therapeutic. For me as I mentioned, I could not step away from a system that I knew could be fixed, that I knew even small little tweaks would make a huge difference. And I think it was really important to connect with families at the NICU level. So getting to the families at the earliest possible moment with other families, I think for me is key because they are then connected with people who are walking the journey with them.

There are some families who are inspired to do what I do and I work with so many of them in my own organization and there are others for whom they're at the other side, they need the support and they're the ones who are recipients of what we do. And I guess everybody can't be an advocate, you know, and that's OK. But every child deserves the best care and deserves the best care pathway. And when parent organizations like ourselves operate on a national basis. I think our NICUs should be supporting the work that we do and ensuring that their families are connected with these networks because there was nothing in the community and parents tell us that is the biggest fear for them is going home and that isolation of cutting that NICU cord and having nobody to help them on the next leg of their journey.

A lot of them don't necessarily understand that premature birth is for life. It's not just for the NICU. And some of those realizations can have a catastrophic effect on families when they get home and they understand that they're not coping because things are unfolding that they're not prepared for. I think, you know, connecting our families to other families who are like myself in advocacy or who have walked that journey in the past or who have a healthcare background, who have probably walked the journey, have written the story, have been and done and worn the t-shirt is so important for new families coming up because I think it ensures that they don't have to suffer the same as we have done.

Ben Courchia (19:54.764)

Yeah, and I was actually going to mention that we've had the opportunity to speak to many individuals who are involved in organization supporting families. And what I find is that very few are doing the work that the INHA is doing, both reaching the highest levels of politics and government, but also not losing traction as they are trickling down to the bedside. And I think that's a really unique aspect to the INHA, a part of its success and its merit is the fact that you've been able to influence change both in government and also for individual families at the bedside. I am curious about what are some of the interventions that you've been able to work on that have had a significant impact, maybe an unexpected impact on families that you're hearing back from mothers and fathers saying, wow, this really made a difference for us. And what was that? Because I think sometimes it could be a good place to start for others who are trying to emulate your success.

Mandy Daly (21:04.119)

Yeah, well, as I mentioned, we were very successful getting a 24-hour transport service in operation. And that was life-saving for so many families because that ensured that babies who were born outside of our cities were now in a position to avail of tertiary care. And that in itself has a positive impact for our families. Having neonatal guidelines is incredible because a lot of our families didn't realize, nor did I, that we didn't have a national guideline for neonatology. It makes no sense these days, but that does happen.

We also noted, and as in my own case, I was going back to work and my daughter was just coming home from hospital and I could not avail of childcare because nobody wanted to touch my baby. They were so scared. And for me, I had to take time off work. So we started lobbying our government yet again for extended maternity leave for our families, because these families, they may spend 15, 16, 17 weeks in the neonatal unit and have to go back to work after 10. So that has been very beneficial and families tell us now that it allows them to connect with their baby in the home environment and start their parenting journey in a normal environment. So they're coming home and they now get those extra weeks that they have spent in the neonatal unit to get it back in maternity leave. So they are really a family at discharge starting their maternity leave.

That's so important because you know these babies have had a tough time. Attachment and bonding is something we don't always talk about in the neonatal unit but we know from a research perspective it is so important for a child's independence and resilience later in life. We want to create those environments for families, those spaces for families to be families. Families tell us what isn't working for them in the community. So they tell us, the general practitioner service they go to when the baby is sick, the GP is saying, that baby was born preterm and I'm not really sure. Go to your accident and emergency department, your ED department. And that is exactly what would happen to me. I could find nobody in my community who could manage my daughter's even just minor illnesses because of her birth story.

So what we've managed to do now is now we work with our medical schools and our nursing schools, our pharmacy schools, so that all those community-based healthcare professionals get some form of neonatology education which we have developed and which we deliver so that when they go to practice in the community they are upskilled and they can help our families and they can break down those walls of isolation because families they are frightened when these babies come home and you know knowing that there is a whole network in the community a healthcare network who understands their journey and can actually meet their needs has been really important.

We do a lot of education throughout the entire healthcare system because for me, I spent most of Amelia's early years in an emergency department. Every time she got a simple cold, nobody wanted to know. They wanted us straight into the hospital and it wasn't necessary. It was exposing her to stuff she didn't need to be exposed to in another completely different conversation. So yeah, I think that's been a huge impact is by getting all the healthcare communities to work together and having conversations with them to see what they know and what they don't know. It turns out they know very little. They get very little exposure to neonatology.

And we bring families into medical schools and we say, please just tell your story and tell these students what would have worked better for you. And by hearing those real-life stories, these students are going out into community with a different insight about families who have preterm babies. It's not just they come early, they'll be fine by the age of two. We are now equipping them with some of this stuff that we see as families. So like a lot of Amelia's developmental problems, nobody would listen to me for the first three or four years. There was no name on a lot of the symptoms that I was reporting.

We now do workshops for families, workshops for healthcare professionals telling them about the things like sensory processing disorder because there's very little information about it and families if they are informed earlier and they're educated and they know what to spot, we are equipping them to advocate on behalf of their children. We are giving them a skill set that will enable them to go to a healthcare professional. Sometimes they come to us and say baby is doing x, y and z, is this normal? We have a medical panel of experts who will, whether it's physio, occupational therapy, speech and language, dietitian, who will say to that family, okay, tell us what your baby is doing. And we will signpost you to the relevant people in the community that you need to be talking with.

So we're trying to break down those barriers and make it easier for these children to access interventions because we know the earlier we intervene, the better the outcome for these children. And in my own case, I have an 18-year-old who's got dyspraxia, sensory processing disorder. She has interoception problems, she has health anxiety problems because she has spent an entire life being ferried from one healthcare professional to another and not getting answers. She struggles with her motor skills, fine and gross motor skills. She has no executive function. I mean, the list is endless. But these are all the things that I encountered just living with the child. Because sometimes when you see a child in a healthcare environment, you see a snapshot and it's much easier to come into my life and say, live with me for a week and tell me this is normal. And that's the only way.

We say to parents, video what your concerns are and show it to a healthcare professional. We're giving the parents the skills to advocate on behalf of these children, because when I entered this field, it wasn't happening. There was just simply no follow-up. Follow-up ended at age two. And we know that that is wrong. We know we're doing these kids a disservice and the families a disservice.

We don't have any more children, we made a decision not to have any more simply because the one we had was, I wouldn't say problematic, but it was difficult to manage and get the support after the discharge that we needed. And I just felt my energy was better served into making sure that she got the best intervention she can. And we're still 18 years later, still having daily issues related to prematurity. You know, even as she enters adulthood, we have these issues of facial pain because of a CPAP mask that was on 18 years ago. Things we could never have preempted. So I guess I'm still writing the story and we are ensuring that the services that we offer facilitate those parents who don't have to follow in my footsteps to get something fixed. We can say this is the pathway that you need to follow if these are the symptoms that are occurring in your life.

Daphna Yasova Barbeau (27:36.007)

Yeah, I think it's incredible what you guys have done and to Ben's point about the breadth of how you're doing it. You know, education at the professional level, education at the family level, just normalizing these experiences for families. And again, I think for those of us in the States, we really struggle just getting parents at the bedside, right? Because of the way our society functions. And for people who don't know, Ireland has kind of a mixed system, both a public and a private system. And you were a NICU mom, but you had some experience in the healthcare sector and the insurance sector. So I imagine that's been valuable for you as you go and you advocate for families. And so I'm hoping you can tell us a little bit about what that looks like on that sort of level impacting the way insurance functions and policy change from someone who you were primed to have all of those background areas of expertise to try to make this kind of change. And I am hopeful we can learn from you as we go and speak to our hospital administrators, our insurance providers, and certainly our government officials.

Mandy Daly (28:52.921)

Yeah, do you know what was really lacking here in Ireland was a cohesive voice and a collaborative voice. So we had individuals who were trying to do work in silos again. I'm going to use that word constantly because that was the biggest problem for me was there were people doing the same work and there was a lot of overlap, but nobody was working together. They didn't have that platform to do that together. We gave them that. And you're right, having a healthcare background was really beneficial for me because I spoke the language. I didn't speak the anatomy. Now I can't do it now. But at the time, I will be honest with you, there were people who looked at me and thought, what is she doing? Is she mad? You know, and I've had people stand up in conferences after I've given a speech and go, who do you think you are? You're just a parent, you know?

But unfortunately, that is the reality. We have a system where we're used to parents not talking. And I think we are slowly breaking down those barriers and we do have a lot of families now who are inspired to just even sometimes share your story. I think sharing your story, we should never underestimate the benefit of storytelling, the impact it has on others. And it's always good for me if I share a story, I will often back it up with research or evidence because we do a huge amount of research in our organization. We work internationally with a lot of researchers on issues again that families are telling us nobody's listening to us. This is much more important to me than this. And I think that has made a huge difference bringing families together with researchers to change that landscape has been very beneficial.

We do struggle still. We do have families who don't speak English. We still struggle to get them involved in education, in the research aspect, the advocacy aspect and I will hold my hands up and say that is our biggest challenge. We are unlike yourselves, we don't have a huge number of people in the country, we only have over 5 million and we don't have as many different races and different cultures, but they are there and there are lots of minority communities.

What I have learned from one community recently, it's a Roma community, they're very private and they will not work with us at all because they're scared. They're scared of a health system that does not support them and they definitely are suffering lots of inequalities. We have made the change for them. We've gone and met them in their community. So instead of meeting them at the cotside, we've gone into where they live with one of their own and we have built a relationship with them very slowly, trying to create some sort of an atmosphere of trust and respect, because unless we had that, we would never engage them.

We were looking at some qualitative measures recently for changing the maternity system here in Ireland. And we knew we weren't capturing a lot of these minority groups, their experiences. And it was only by going and meeting them in their homes and building that relationship over a period of time that we got them in to telling us what their story was. And sometimes it just takes time and it takes the right person. And it takes people who are skilled in communication and in listening and in observing.

So I'm a member of the NIDCAP community, which is American-based, based out of Boston. And observation is one of our, I suppose, cornerstones that we spend a lot of time not talking. You'd never believe it when you hear me, but I can't stop talking. I can look at a baby in an incubator, babies like babies tell us lots about the way they move, their gestures, their body movements, their physiological signs, all humans do. And sometimes we need to take that step back with these minorities to see what are they saying, what are they not saying, and how do we break down those barriers. And there's a bit of strategy involved. Again, maybe one of my strong points.

Ben Courchia (32:47.980)

Yeah, that's what I was going to ask you because it seems very clear from chatting with you that you have a special ability to be sensitive and attuned to what's happening around you and then pick up on signals that you feel might be an opportunity for improvement and for support to your community. My question to you is a more technical one. People must see you come from afar and be like, what does this lady want from me? How do you introduce your mission? How do you introduce what you're trying to do? Because again, it is an unusual experience for the people that we approach with these concerns, with these questions. And you've been successful at it. I mean, you've just described reaching out to underrepresented communities in your area. So what is your, can you share with us what is your secret?

Mandy Daly (33:42.507)

What I haven't told you is the millions of times it's failed and that is the difference. Like for all our successes there have been a hundredfold of things that didn't work and we have had to change our approach and that is one of the things I've learned. You know I started off wanting to change the world, I'll be honest with you, I was going to change everything and then I quickly realized actually the world actually isn't that easy to change and there's lots of barriers there. And I have had to, I've been knocking on lots of doors and I'm still knocking on certain doors that are not opening for various reasons. And I will try several approaches. I will try different faces. I will try different modes of communication.

And I am first and foremost a parent of a preterm baby who has had 18 years' experience right across the board with both the health service and the community-based services, with academics, with researchers. I generally will introduce myself to people as a parent, but I do have a healthcare background. And that for me has been a door-opener because I can speak the same language. What I do here now is I teach other patients, not necessarily just in the field of neonatology, but in other disease areas, how to speak the language of their peers within that area if they want to make change. I think we as patients, we cannot expect all the stakeholders to come down to our level. I'm going to use that phrase loosely. We have to meet them at another level. And for us, a lot of us have had to go back to university, which I've done. We've had to study pharmacology, clinical trials, medicines regulation to equip ourselves with the language and the expertise to make that change.

Now, that is a huge ask of every family. And I know you're not going to get it. But I can name you an individual in 40 different countries who is doing what I'm doing, who has done what I'm doing. But by way of introduction to others, I will always just sell myself as a NICU parent with lived experience. And it's experience, I think, academics, researchers and healthcare professionals are beginning to value more because we are now looking at the cost of healthcare. And we know that service users are our best source of information in terms of developing better policies, better services, more efficient services. If it's patient-led, it's going to benefit those patient communities.

I think the tide has changed in many aspects in terms of service development. Certainly, I'm seeing it here. What I'm hearing from my colleagues in the States who do the same work that I do is I think they are struggling to be heard in a very, very busy space and they're still struggling to find that door-opener. They're still struggling to be valued or respected as peers and they often look to us in Europe and say how did you get to where you're going? But I'm doing this nearly 20 years. It was not like this at the start. I had people literally shout at me at conferences and say like you're just a parent, what are you doing? You know, what would you know?

Thankfully, that has now changed, but it has taken a lot of political diplomacy on my part, sometimes a lot of tongue-biting and going back to the drawing board and saying that may not have worked that time. OK, how are we going to do it again? And there are certain things that have not worked. I will be honest with you. There were certain places that unfortunately my efforts have failed. And I think sometimes we are dealing with, dare I say it, maybe older healthcare professionals who are struggling with the way the landscape has changed. And maybe it's a case of we need to wait for them to move on and for their underlings to come into post. Maybe I have used this approach and it has worked and it's just patience on my part. Unfortunately, I don't have a magic formula that works, but I do feel that...

Ben Courchia (37:30.678)

Well, you've described the magic formula of adaptability, perseverance, and I would say a little bit of audacity. So I think combine those at the ratios that you find appropriate and maybe you'll get somewhere. Definitely.

Mandy Daly (37:50.071)

I do have an amazing team though, it's not just me. I have an amazing team in my back room who do all the donkey work, who do the work that I'm really poor at doing. And that is important. This is not a solo run, this is a team effort. And I think we all in our teams have identified what our skill sets are. And we have honed the work that we do such that the work that I do, I know is good in a particular area, whereas I'm rubbish at tech. I am really rubbish at fundraising. My communication skills extend to Facebook and email, you know, so I know what I'm good at and what I'm bad at. So I try and concentrate on the efforts where I can see improvements being made.

Thankfully, having been around for 20 years, my name is probably known to the vast majority of neonatal experts in the country. So there's very few people who will not know my name at this point. And it's right across the spectrum of medicines development, academia, research, policy. For good or bad, you can tell by their reaction on their face when somebody says your name. But they recognize now the value of hearing parents' lived experience. And it's so nice to see, you know, neonatologists reaching out before they do research, before they engage in something and say, can we have a focus group? Can you organize a focus group and let us hear what families are saying? These are the research questions we think are appropriate. We haven't got a hypothesis yet. Can you help us develop one? This would not have happened 20 years ago.

There were no patients in the country involved with any research happening. And, you know, the research is where the future lies. If we can shape the future of neonatology here through steering our research endeavors, that is going to benefit every single baby born early, every single baby who's born just too soon, too sick, too small. They will get better interventions, they'll get better maternity care, they'll have better outcomes, they'll have better follow-up.

We are learning so much as a community of families. We have lots of families whose children have neonatal encephalopathy who are just discharged with nothing. We are now educating those families with resources so that they can have conversations about inflammation. The fact that their children have issues with their kidneys, with their lungs later on, even though they had neonatal encephalopathy, which is a brain problem. So it's connecting families with information that is going to actually empower them later on to be advocates for their babies. That for me is the most important thing that we do. But by doing that, we're also connecting families to research, to academia, to healthcare. So it's almost like a big web that I kind of see visually in my head that there are little spirals going out. And ultimately, I want to walk away from this and I want all this web to be connected. I don't know if that's going to happen. But like my child is going into adulthood now and we are still under several specialists, still trying to get answers for things that I know are related to our premature birth.

So I will continue to have these conversations. I work with a lady who was born preterm, she's nearly 40, and she has set up an adult organization globally and she's doing incredible work. So she's now connecting adults who are born preterm who don't have the benefit of my families, who have a lot of maybe physical, developmental, behavioral issues that they didn't even realize was connected to their preterm birth. And she has now created an international collaborative platform to support them. And we work very closely together because all of my community are now going to be going into adulthood and they will have to morph into Lauren Ingledo's organization at some point. So it's even connecting patient organizations so that we are ensuring that continuity of care.

Once my daughter is 18, but there's absolutely no way she's ready to have her own voice yet. I think she much prefers me to have those conversations on her behalf. But she does hear stuff and I hope someday she will be able to speak her own story. And it's not everybody's thing that they want to speak it, but she knows that some of the conversations we have have made a huge difference. And that for me is rewarding. It means that some of the tough days we've had, I'm going to say are worth it because it's taken a tough day away from another family. And for me, that makes it easier. It has been difficult. It has been difficult raising a child with lots of issues and struggling to be heard. But then when you see something, you see another family benefiting from your endeavors, I think that is almost a healing for me because I realize there's so many things that could have been different on our journey. And that inspires me.

Daphna Yasova Barbeau (42:17.871)

I love that. And to your point about needing the voices of patients and families, obviously your work has created a lot of services and interventions at the system level. I wonder, you carry your story, but the stories of so many other families and their voices, what is the one thing on an individual level, on a kind of day-to-day level in your NICU all those years ago that the healthcare professionals could have done to change your experience. We are working in different systems and we have all these obstacles and barriers, but I wonder if there's something on a personal level, on a one-on-one level that we can take to the bedside tomorrow. What does that look like?

Mandy Daly (43:02.029)

The biggest thing for me was I struggled to find my role as a parent and it was me trying to find it. I think if we had a better family-integrated system where families are seen as primary caregivers from day one, you know, that entering into the NICU, that buzzer at the door, that is not family-centered for starters. That is creating a barrier. There are so many things we could change so that when families realize, OK, my parenting role has changed, but this neonatal unit where I'm going to be starting my role as a parent, that if that facilitates better parenting, that automatically sends those families home more confident and competent with a sense of home with a voice of the parent.

I felt, I often say this during presentations, I did not feel like Amelia's parent until she was about four. I always felt like a carer and it was my duty not to kill her. Basically, I just didn't feel I had the skills as a parent of a preterm baby to do my best. And that is something we need to look at from day one. Once a family enters our neonatal unit, they're entering as a family. No baby comes to that unit as an individual. It's an entire family. There's baggage, there's probably siblings, there's grannies, there's aunties, all of whom are going to be part of that community, that village that is going to be supporting this baby for the rest of his or her days. And if we don't equip our parents or whoever the carer is at the cotside, we're doing everybody a disservice and they're going home and they're just finding, I still don't know how to be a parent.

And it pains me to say I used to feel like Amelia's carer, but I did. Every single day was mapped out with things to stop me killing my baby. Like, you know, making sure she hadn't stopped breathing, that she didn't vomit, that she was getting some food into her, that she was trying to get sleep. There was none of the fun stuff. And I don't remember any of the fun stuff. And there are things you don't get back. You know, all those memories from the day you give birth to a preterm baby, from that moment of birth, everything is different. Those memories that you wanted, you can never recreate. But there are other ways that we can make new memories.

And I often say in the NICU, never send a family home every day without a positive. Even if that positive is that baby did not lose weight today, please don't let us leave on a negative note because it is impossible to go home and find sleep. It's impossible to go home and relax. Amelia was about a year old and I woke one day and I felt different. I didn't have a knot in my stomach and I was aware of it, but I wasn't aware that I had the knot in my stomach until it was gone. And for me, it was a eureka moment. It was like, oh my God, obviously I've let something go overnight and whether it's anxiety or fear or there was something I was holding on to, but I felt different.

It was really hard to look back and find any positive moments. And what we do is we talk to staff, we talk to staff about how to make things better in the NICU, you know, find a positive. I don't care what it is. There's a positive in every day. It's there if you go looking for it. And, you know, there's lovely things like NICU milestone cards. They're very precious because we have lost so many other memories. Make memories out of your time in the NICU. Care for the family as a family, not just the baby. And I understand we have resourcing problems and finance problems. But these are families that are destroyed for the rest of their lives in some instances. You know, we know the divorce rates for families who've had preterm babies are enormous. We know that postnatal depression, PTSD, you name it. The research is there that substantiates all of this. We can do something, small changes, small little interventions early on and make a huge difference. That was a very long answer to a very short question.

Ben Courchia (46:40.152)

No, but I mean, I think it's so, first of all, it's so interesting to me that you're coming on the podcast and you're sort of echoing almost word for word some of the testimonies that we've had on the podcast from other parents. What you said earlier reminded me of what we discussed with Fabiana Bacchini at the end of 2024. Parents are not visitors, they are not visitors in this unit. I think this is such an eye-opening experience for me to hear these messages being mirrored so closely. And then this idea of leaving every parent every day with some form of positive is so important because it's not to be taken for granted. It's just very difficult, I think, for everybody to have negative news on a day-to-day basis when it deals with your child. I'll take that personally. And I think thank you, Daphna, for asking the question. Mandy Daly, thank you for coming on the show, for sharing your experiences, for sharing your success with the INHA. People can learn more about you and the organization, the Irish Neonatal Health Alliance at inha.ie. And you are very much active and available on LinkedIn and other social media platforms. So we'll link to those on the episode show notes. Thank you so much for making the time to be with us today and for everything that you do.

Mandy Daly (48:06.605)

Thank you so much, guys.

Ben Courchia (48:08.344)

Thank you.