#012 - Juliette Lee RN - Adult Premie and Pediatric Nurse

Juliette Lee is a pediatric nurse from Cambridge in the U.K. She was born extremely preterm in the 1990's and has since worked with other adult preterm to create the adult premie advocacy network (www.adultpreemies.com). 
She also took part in a large study of former preterm adults that you can find at the following link: https://pubmed.ncbi.nlm.nih.gov/31732683/
This was undoubtedly a great discussion.

Enjoy!

As always, feel free to send us questions, comments or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamd.

As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.

Enjoy!

Transcript

Ben: 0:05

Okay, welcome to the podcast Daphna. How are you today?

Daphna: 0:52

I'm doing really well. I've had a few days off unlike you, so. That's right. But I'm very excited for our guest today.

Ben: 1:04

I know I am to today we have the honor and the privilege of having with us Juliette Lee. She is a pediatric nurse based in the United Kingdom. We met Julie through again through the joys and the greatness of Twitter. You are a pediatric nurse and you are also a former preterm baby, you have been very involved in the preterm adult preterm community, you've helped found the website and blog adult premieres.com. And like we just said, you're an active member of the Twittersphere. And you can be found that add to Juliet Prem 28, we will leave all the information about your website and your Twitter handle in the show notes. Julia, thank you for being with us today.

Juliette LEE: 1:46

Thank you so much for having me. This is exciting. And hopefully the recording will go well.

Ben: 1:54

It will be great. And we're very excited to have you with us. It this is not everyday that we get the opportunity to speak to somebody who has your your life journey. And we're very excited to get your perspective on life and on growing up as a former preterm baby.

Unknown: 2:10

I'm excited to share.

Ben: 2:15

All right Daphna. I'm gonna send samples call you get you get to start off this interview.

Daphna: 2:21

Well, I was hoping that you'd start out telling us really about the adult premium network, and kind of what the goals are, of which it seems like you guys have a few. And it's nice to see that you're really bringing people together, not just in the UK, but internationally, which I think is really neat. So tell us a little bit about,

Unknown: 2:45

I will start with a little bit of an origin story, that I was fortunate enough to be involved in some research based in London in England, where I had the pleasure to meet face to face some other adults who were born preterm. And this was the first time I'd really recognized that, Oh, these are, these are people who are in work and going about and interested in research and connected with their prematurity, and became good friends with them through social media because we lived in different parts of the country. And in January this year, with one of those friends, and a few other friends from the adult premier Facebook group, we have set about creating socials and a website for the adult premier Advocacy Network. And we have a logo that took a long time to decide and to pick. And we are wanting to advocate for individuals like us who are born prematurely. We want to connect with people around the world. As he said, We are based in the UK but also have involvement from the United States. We have views on our website all the way from China and Germany as well. We want to promote the issues that are affecting us as adults that we feel may be linked to our prematurity we want to learn more about we want to also provide a space for parents to come and learn about how many things were achieving and what the future may look like for that child who's maybe currently in NICU or just got home and is you know starting to learn stuff and to walk and they want to see a little bit of a look into the future. And we also want to connect with researchers and unit ologists doctors pediatricians, bring them into our world again, to show them how much we achieved that also asked them big questions, ask them more about our health ask them to help us research and to promote our own well being and for all those generations that are coming out of NICU and coming after

Daphna: 4:52

I love that I'm actually have chills honestly hearing you talk about it because that's the goal right a lot. on long, healthy life, right, and we're just getting through the end of the NICU admission. And I think most of our listeners are intensivist. We have some pediatricians we have, you know, lots of people who work in the NICU. But so much of the life is really most the majority of the life is after you all leave. And I like how you said connected to their prematurity. And I wonder, maybe if you can tell us a little bit like, how does your history of prematurity like how does that shape your identity, so much so that you, you know, you're reaching out to find other other people who were also preterm?

Unknown: 5:45

For me, I was, I've always felt very connected to it. I was born at 28 weeks and four days, alongside my twin sister, Beatrice. We suffered with twins twin transfusion syndrome, and were born by emergency section due to our deterioration. And we both spent prolonged time in the neonatal intensive care unit in London, which had us a high level intensive care. My twins suffered quite a lot of during that time was very unwell, and sadly passed away when we were 12 years old. But during that time, there were obviously copious copious amounts of notes written about us. And I was always wary of being of having been premature when I was growing up. I've been very interested in medically things since day one. And that's partly brought me into my nursing career. And I work as a children's nurse at Addenbrooke's Hospital in Cambridge. And I've recently accessed all of my medical notes and understand quite a lot of the medical lingo. And this helped spur this on this interesting Oh, well, actually. Okay, so on day three, I needed this and had this medicine. And this was, you know, an impact of being born prematurely. I needed this breeding sport a day three, because of x, y, and Zed. And that help has helped just keep igniting this passion for, oh, this was a huge thing for me to go through as an infant. And I still want to learn more about it now. And I still feel there are some impacts in my life, things that may affect my health good also, it's a really interesting thing. And it's a talking point.

Ben: 7:29

That's true. I wanted to ask you specifically, you said you've always been aware of your prematurity. And I'm wondering what that means practically, was that was that that your parents told you at an early age that you were born preterm? Was this through what you saw in your twin sister? How exactly did that happen?

Unknown: 7:52

My parents were very good at answering questions. And having my twin grow up in a very medical environment because of her health needs. There was probably initially awareness that my parents probably shared with teams that my twin was premature. And obviously that for that, therefore, that means I was premature. And that I liked asking questions. But initially, it was, you know, a number of weeks, over 4628 hours for over 40 weeks gestation. It was a fact for me growing up, it was something I learned. And I would, the focus was my twins health, and her deterioration. And as I've gone through my nursing career, I've learned more about, oh, hang on, that's actually really significance and the health that the experience of being born so prematurely was very significant, particularly when I was a student on the natal units at Addenbrooke's Hospital, I would care for patients who were born at the same gestation as me, and fill in all of my cell in a way. And that then further developed a bigger interest in an understanding that I had gone through that too, as well.

Ben: 9:10

Especially because there's been a sharp increase in the survival rates and decreased complication rates for for babies born at 28 weeks. And I think the fact that these are still babies who are still medically challenging for us, because of how small they are, you can only imagine what it meant for you being born 10 years earlier, 15 years earlier, when some of the technology that we currently have was not available. So that makes it I think, even more dramatic, I think,

Unknown: 9:38

to see the photograph that my parents took and to have that alongside the medical notes I've been able to access and then having this knowledge that I have through my training increases said that that or, and that I've looked after little babies when I was in the neonatal unit as a student, that maybe Were you born at a later gestation, but didn't do as well. And babies born an earlier gestation that did better than my twin and the vast array of how, how well a baby will do. And there's no set rules, there's no set rule that 20 weeks, this is what you can, and this is what you can't achieve. And that's, I think, sparing us on as adults who are born prematurely, that we want to find what we can achieve. And if we want to achieve it, we will. And this is a big passion that's controlling us all together and determination.

Daphna: 10:34

I think you're exactly right. I think that's what sometimes makes our jobs so hard is, we don't know, always we're still learning, you know, which babies will do well, and which babies won't, and we don't know it the beginning of admission, sometimes we don't know, in the middle of the admission, sometimes we don't know, even near the end of it in admission, which babies will do well and which babies won't. But I'm just thrilled that you found this community of people who really show us how resilient the premature baby is. I also wonder how kind of your experiences and hearing about your parents experiences and your lived experience as a sibling. And impact your your care since you're, you know, a health care provider

Unknown: 11:27

impacts everything hugely. When I came into nursing as a first day of first year student nurse, so straight from school into university, I was faced with the challenge of VI will look after patients who have been in similar situations to me similar situations to my loss as well. And I didn't know how I would face that would die manage with this V that ended up being the right career path for me. But I was determined. So therefore, I did it. I feel my experiences, I'm able to draw on them and draw out a lot of empathy and sympathy. And I think that's helped me to show to my patients that I truly care in that situation, my colleagues that I work with on the ward. And with me my other role as a clinical nurse specialists, they care deeply and they are intelligent, and they are resourceful, and resilience. I have this added on top this, you know, cherry on top of the cake. That means some situations for me can be much more emotional. But I can say very honestly to the parents and the children I care for. I've been there. And I'm you know, I'm sorry. I've been there. And how about we just Yeah, make a joke about wheelchair services because they are a bit slow, aren't they? And I can create that kind of that communication pathway that some colleagues may not have the experiences to create.

Ben: 12:57

I guess the follow up question to that is I'm not exactly sure how nursing and and training in the UK functions. But were you Did you ever have the choice to work in the neonatal intensive care? Did you make a conscious choice to avoid it? And are you considering potentially returning to the NICU as a provider?

Unknown: 13:18

So I had the opportunity I had a 12 week placement as a student during the second year of my three year degree. And it was phenomenal. Absolutely phenomenal. There were three of us lined up at the door of the NICU. On the first day, we stepped in and you hear the sound, you smell the smells, you see the sights, you hear the noises, you hear the beeps. And the person who introduced us to the ward was a person who said goodbye to me on the last day. And she shared with me that on that first day, there were three of us. So there were two young ladies standing next to me and they weren't or their face was a bit taken aback. And my face lit up. And she could tell I was comfortable and really happy to be there. And that environment wasn't a fearful one for me. Those beeps those buzzers, those tiny babies is nothing I've not seen before. So I learned an awful lot. And I did choose not to apply for a job there. When I finished my degree. I was something I thought very hard about within children's nursing, there are specialties you can go into. And part of that is neonatal care. And you go in and you do further training, and you develop further. And it's a niche that you go into and use you stay in. Once you're in, you're stuck in a very in a good way. And I chose instead for now I'm developing my skills as a general, pediatric surgical nurse primarily, and also working with a rheumatology team that Nikki was always on my mind. Don't worry. I have many years ahead in my career.

Ben: 14:56

That's that's that's good to know. Now, I have one more follow up call Question, which is that babies who survive the NICU and who are unfortunately, frequent fliers, quote unquote, of the healthcare system because of difficult complications give the neonatology unit a bad reputation within the hospital. Right. I mean, when when you work in the pediatric ICU in the emergency department, when former preemies with sometimes some of the most complex ones come back, you can see staffing saying, Oh, my God, what is that? What has the NICU given us? How have you been confronted with that in your in your work? And how has your presence, maybe change the perspective of your colleagues?

Unknown: 15:38

So I've experienced kind of a sidestep of that. So second hand, aware of patients who maybe I even knew briefly when I was a student, or Nicky have needed maybe pediatric intensive care, or they've needed, you know, trips to a&e when I was there as a student. And they do look very complicated. And you start going, Oh, birth history expecting moms go, oh, yeah, born at 41 weeks, waterbirth. Lovely. And mommy pulls out, you know, 15 sheets, and I go, I would go much this is so detailed, fabulous, but some colleagues might go, Oh, I've got a read now. Okey dokey. And maybe not having an awareness and a bit taken aback. Maybe. I've seen a in my my role as a qualified nurse. I've looked after children who are x Prems. Who come for surgery, we see quite a few requiring hernia surgeries. Do you see quite a lot. And those who have had airway difficulties or maybe a tracheotomy requiring looks down the airway, billing dilatations and things or those who have suffered brain injury or hydrocephalus requiring care of neurology care, potentially shampoos, taps, those sorts of things. And I can walk into a bay and look at them and go, Oh, you are Prem, and have that look, still even a year even. You can walk in and go, Oh, and then I, you know, take fancy because I go oh, I can I can share something with this family. If I feel it's appropriate. I can go in and go, I'm looking after you today. And you know, they start talking and I say, Oh, if you have time in hospital before, and they share that their child required neonatal care newborn quite early. And I And often, there's quite a lot of 20 week because actually, it seems so simple track them. And I go, Well, Mum, hi. I was born at 28 weeks, and they go, Oh, wow. That's, that's good. And I've had parents ask, so will my child be able to live a life like yours? Okay. Cool. So can we give them all the resources, we can give them all the support they need? And they can live a hugely fulfilling life?

Daphna: 17:51

Yeah, when I was first reading about your group, I had not, you know, immediately thought of how it would be received by parents. And I think it's so notable that you guys are trying to reach you know, trying to, to reach that population, you know, parents who have babies in the NICU, who are just totally overwhelmed. And their question isn't about the medical care in the NICU. Right? It's about what will life look like for for my, my baby, my child, you know, what will they be able to grow in do and the providers in the in the unit, almost always sale we have we have this spectrum of this is, you know, we see these outcomes based on these comorbidities and these, you know, other things that happen in the NICU, but for them to be able to see, you know, or hear about real life people, I think is a really a tremendous facet of the work that you guys are doing, and how have parents been reaching out? How have they been involved? How is that going?

Unknown: 19:08

I think that my we're still in the very early stages. We have a Twitter presence and Instagram presence, the website presence and a couple of Facebook groups. We need to grow so that we can reach those parents and actually offer them what you're saying what they what they feel they need those questions that they want to ask us. We're ready. We would love to expand as much as we can throughout the globe, so that we can reach those parents that want to interact with us. We need we need everyone's help. We need Comments, Likes shares interaction, we want to have everyone involved that wants to be involved as an adult prime. We want parents involved, professionals, researchers, we need more, more we need to further reach so that we can be there for those parents who want to ask this question.

Ben: 20:05

I wanted to ask you a more relaxed question that I mean, as you know, obviously, we use a lot of caffeine in the NICU. What's your relationship with coffee as an adult premium?

Unknown: 20:15

I have to say I do not drink coffee at all. I made the decision when I came. I know I'm probably I am. I feel I know that I am not the usual representation. Friends that I have, who are adult Prems still use caffeine. Mostly drinking coffee. I have made the decision when I started university that I would avoid coffee at all costs. Otherwise, I knew it would be my lifeline. So I'm sorry, I'm a little bit atypical.

Ben: 20:48

Are you a tea drinker? Is that is that a brick thing? Sadly, yes. Hello, cup of tea. Yeah. That's cool. I wanted to circle back to the first the first part of the first part of the the first answer you gave us when you said that you the whole endeavor for adult premieres that comm started with you being involved in a research project a few years back. I'm wondering how, how does it look like for you to get involved in a research project? Is this something that you that you seek out? Or is it something where people reached out to you and and how did this I'm curious as to how did this unfold? How did it make you feel to subject yourself to a research study and things like that?

Unknown: 21:36

So this research project, China is quite a few years ago, I think it required a little bit of googling on my part when I was just on a whim thinking and maturity, adult England, London, Cambridge, you know, seeing what was available. And this was a project that was looking at core outcomes in neonatal research. So I was a participant in roundtable discussions, and final kind of decision groups as well. And this was all pre the dreaded, dreaded COVID. So I was able to see people face to face and travel to London. And this, I felt included, I felt involved and like I said, met other individuals, and went all other adult premiers exist, oh, well exciting, and felt, you know, respected by the researchers, they show that they valued our opinions as a separate group separately to neonatologist separate parents, separate other researchers, we were our own people, and they wanted our opinions. And that's something I am wanting to do as much as possible. There's a research project currently in England that I'm one year too young for. But I have been communication and have met the researcher and are keeping channels open. And there are research projects that we're trying to promote through our Facebook pages that are based in different parts of the world that are open for, you know, individuals in the US individuals in the UK, and trying to boost up premiere representation within within I've research projects that I love a bit of research. I like reading a paper with work. But

Ben: 23:26

but so that's interesting, because you you seek out opportunities to connect with, with other adults premies. And I guess this is where this is where your website becomes an interesting tool, because I think hearing your story, it seems that the research environment was probably one of the only avenues for you to connect with other with other form adult free terms. Is that right?

Unknown: 23:51

Yes. So meeting these people face to face. I don't know how I would have kind of found them or reached out without the opportunity that was afforded to me through this research project, and just being prompt in the same room and being told, Oh, well, this person, this person would pay me too high and being quite in awe. And then lead on one of the gentlemen ran the version at the adult premier Facebook, which has opened for those individuals who were born prematurely for us to create a space to discuss our stories to discuss what's going on in our lives, discuss our progress, our achievements and our difficulties. And from there, nothing grown into the adult premier Advocacy Network, which is that bigger group for almost everyone and anyone who feels they want to support and be involved.

Ben: 24:45

That isn't like high school there's cliques of pre terms, the 24 weekers and the 28 weekers. And you don't hang out at this. I can't tell

Daphna: 24:58

Well, I'm sure there are no different groups with different kind of lived experiences based on their on their prematurity. So I'm interested, right, how people how how that plays out, right. If they feel like, you know, they're they're more premature, or they've been more impacted by their prematurity. I wonder if that comes up in the in the group chatter,

Unknown: 25:21

I'd have to say I've seen no hierarchy, maybe that's how we're describing there, you know, you could look at someone who said, Oh, well, I'm a 24 week when you go, Oh, wow, well, you win. But in a, you know, in a jokey way, you know, being born, you know, within those perimeter boundaries before your 37 weeks, we welcome anyone and we have realized that we can see, you know, statistically, those individuals who were born that most premature, are likely to have maybe more significant or more health issues and difficulties than those at the later end of the preterm spectrum. However, we bond over the fact that we born prematurely, and we do discuss our gestations, and we discuss the difficulties we have, and some are more risk of certain difficulties than others. But we always try and support each other. And then you'll always have something common in common with someone, you know, with sharing about issues with vision or issues with learning. We share about fatigue, we share about learning more about our stories, or if someone doesn't have any photographs, we try and be supportive around them. Even if we have you know, some of you have videos at the time of Nikki potentially. So we don't have any created this natural hierarchy. It hasn't. It hasn't initiated itself. We are we've grown into this really supportive group.

Daphna: 26:45

That's tremendous. And we know that even the late preterm, you know, not not that premature, that, you know, their outcomes are different than than full term babies. So I really think that's really amazing that you guys have been able to do that. And, you know, the research done, like you said, is not been extensive on adults born born preterm. But interestingly, I hope you guys know that it I mean, it really has impacted the practice of neonatology. I think when the first quality of life papers came out, where they were asking adults preterm to rate their, what they what they thought about their quality of life compared to what their parents thought their quality of life is compared to what providers and medical providers thought and adult preemies really value their their quality of life. And I think it changed our perspective on a lot of things. And I think that there's still work to be done in that area. What are kind of your goals? You know, if you could the one the things you want to study most, I guess, if you got to pick? What would that look like?

Unknown: 28:05

At the moment, one of the big themes that we're seeing and we're exploring is follow up care. It's a massive gap. It's a black hole of a gap. And that's something as an adult primary community is a hot topic, looking at our health and our outcomes. Now, lots of us are kind of 20 in our 20s 30s 40s. And looking at our health and our education and our developments and going well, I found that tricky. And I you know, I suffer from this set of symptoms and this condition. No one's ever acknowledged my preterm birth, you know, we often mention it to our general practitioners or primary care providers, and they go, Oh, well, you look okay. Or you look like you're developed, well, you look like you've recovered well, and inside with squirming because we are proud of how far we've come and how much we've achieved. And we survived our premature birth. And we're alive and we're adults who are in the world and contributing to the world, that we do find individuals who find things harder and will question their health outcomes and think, Is this linked to that? Could that be due to my premature birth or a consequence of something that happened during my neonatal period? So our our key hot topic at the moment, is that longer term view of health and that follow up care that at the moment doesn't exist? However,

Ben: 29:37

does that mean? Does that make you anxious? Juliet, I'm curious about that. I mean, you are as a as a member of the adult preterm community, you're on the frontier of medicine. I mean, a little bit like children who are born with congenital heart disease who underwent some repairs in the 1990s and who are now the only survivors of these new technologies. Does that create any anxiety You not really having anybody else sort of before you who has paved the way to sort of know what, what the path looks like in being an adult preemie

Unknown: 30:09

having a gap in knowledge can always cause anxiety for individuals for parents, healthcare providers. And I think we're turning the anxiety knows questions, and we're slowly turning the cogs to get the answers so we can relay those fears. And we can find reassurance. Or we can go through discussions with healthcare professionals investigations for reassurance or investigations to prevent any deterioration or to promote the healthiest lifestyle so that we're protecting our health for the years to come. And linking those dots between research that has been done on the outcomes, long term, longer term outcomes of prematurity, the longer term outcomes for the heart, the lung, the brain, the skin, the digestion, any system you can pick, and create, if you know, making a bridge between the gap of We are the individuals that want to learn more about these risks. But we need the involvement of researchers and healthcare professionals to bridge that gap.

Ben: 31:13

And how do you feel that the community of adult preterm helps you manage this anxiety knowing that you have a crowd with you who's walking this path? Maybe if they haven't been so far up ahead the road? Maybe at least they're walking alongside with you does that does that provide I mean, I feel like this is an amazing an amazing aspect of of your foundation of your blog of your Facebook group. But I'm wondering how you feel about that. Personally,

Unknown: 31:35

I feel Ben, how you put it already is perfect. We know that we have people beside us, and our parents, were there to be our voice and fight for us during our time in intensive care. And now it's okay. And we have you know, support from our adult premier community. And we're, you know, gathering momentum and support from the healthcare professionals that we can reach out to mostly through social media at the moment, and having them walk beside us as well. And just getting the ball rolling, so it can keep rolling, keep rolling to reach the right people and get larger and broader and spread as far as we can. So that we know we're doing what we can to promote for ourselves to promote for our health and our well being.

Daphna: 32:22

Yeah, I was thinking, you know, we knew our audience would be interested right neonatologist and people who work in, you know, around the NICU. But what you really need are advocates in the adult medicine community, because like you said, I imagine I can't recall anybody ever asking what my birth history was as, as an adult. And I think that we're going to continue to find through the work that you guys are doing and through other studies that, you know, our health outcomes are affected by prematurity. We know you know about heart disease and metabolic syndrome in in adults born preterm, but that's really just the tip of the iceberg. And so even that just just being asked, I think the question about the birth history and showing that people understand that prematurity is in of itself, a risk factor for adult disease, I think would be a huge hurdle to overcome.

Unknown: 33:25

You're absolutely right, that is the first step. We were having a discussion within the advocacy network group about what's going to be achievable. And we feel that improving the knowledge and awareness of those people that as adult as relatively healthy adults we will actually encounter are usually our primary care practitioners our GPS and giving them education on Yes, we ask about birth history now. That's the rule now. And also teaching them about what the consequences of asking these questions are, and the consequences for that individual's health or the monitoring that's required to ensure they're healthy and ensure they're receiving, you know, the best lifestyle advice and the you know, the optimum care for them, even if they walk down the street and will look like a healthy, fully grown adult.

Ben: 34:20

I always tell parents that what fascinates me about preterm babies in the NICU is their resilience. I'm always amazed by how much these children can go through and come out on the other end, so strong ends and again, so resilient throughout and I'm wondering, if you if this is completely not medical, by the way, I have this personal feeling that this is an intrinsic component of these children's nature that they are extremely resilient. And I am wondering if this resilience has shown up in your life and if you could give us some some examples within your within your life sort of how your resilience as an adult has helped you overcome any any obstacle,

Unknown: 35:06

then you've hit the nail on the head. That's, that's really the word that I was used for all of my friends in the adult premier community that I have the pleasure of knowing that they're resilient. And their parents were, that we also are. And we develop that from our time in NICU. And you know, some of us will have developed more patience as well and more respect for those who are different from us, because we have this innate resilience. During my life, I have had challenges. As I've already mentioned, my twin sister passed away, she was very sick when we were born, and did very well to live until we were 12 years old, and then suddenly died quite unexpectedly. And it was extremely traumatic. For me, this is a very tough time in my life. And it affected my mental health quite significantly. To get through that, to have woken up the day after and gone, oh, I'm still alive, I didn't disappear. Oh, okay, now I have to carry on, I still exist. So therefore, I have to keep going and carry the trauma with me. And I've been able to get to a stage where I still have that, that feeling of grief, and I still carry her with me. But I'm going to use that determination to make changes for myself and the people around me, to help them and at the moment, this is coming out with the adult primary Advocacy Network, this determination that is inbuilt into me has been you spurred on year by year to promote for my own health and for those around me, who may not be able to do it for themselves. My chin suffered from a lot of disabilities and needed care around her at all times. And that passion drew me into nursing and is now carrying on this determination with promoting for these adult parents around me.

Daphna: 37:04

Have you been able to interact with other surviving twins, you know, it's a it's a population, a subset of the NICU population that I think like you said carries its own burdens. Certainly, for you to lose a sibling at the age of 12. Is, is is very difficult. I wonder even of surviving twins who didn't get to know really didn't have a childhood with their with their twin, and how that's come across in the network.

Unknown: 37:37

Do we have that within the network, I have mostly interacted with those who are Singleton's. But there are individuals who in the most part lost their twins very early on. Part of that was their journey kind of within very premature birth or illness during their time in the neonatal intensive care unit. So, so far, in my journey, I have had interactions mostly with individuals who are part of groups for those who are born and who are lone twins, so who have lost their twin, but you can kind of go through and weed out there's there's a subset within that subset who were born prematurely as well. And I have promoted my prematurity groups to them as well and invited them to join and interact as much or as little as they wish to the lone twin community. There's the lone twin network in the UK. But it's open to others around kind of Europe and anyone who wants to interact, he do meet in person when we're allowed. And the twins twin international group that's based mostly in the US but again, welcomes everyone from around the globe. And this is a very, very precious and very special group to me, that allows me to openly talk about my grief in a way that you can't talk to anyone else about you can say something and they get a hat. I understand. And it can be something silly, it can be something really deep or meaningful that you have that acceptance. And that's we've found this in the premier group that we will start rabbiting on and sharing our birth story and talking about, oh, you know, I've got this mark from this cannula or long line and, oh, I had to have this surgery and I've got this scar here and comparing scars, which I don't really do in the normal world, but within the premier group, they can definitely

Daphna: 39:32

Well, thank you for highlighting those groups. I think it was nice to hear about some of some of the other things, you know, the other groups that you know, or, you know, work in conjunction with with your group. And you mentioned another group of, I guess, premium adjacent people and that's your parents. And have you guys been interested in studying them? You know that community is interested, newly thankfully interested in outcomes of parents of NICU infants. But it's really short term, right, focuses on, you know, short term mental health. And we reviewed some papers in the last month about longer term outcomes. But it's not really that long term compared to your groups of parents.

Ben: 40:25

We feel so small in our follow up to 18 months when we have the ability to speak to you, Juliette?

Unknown: 40:32

Yes, we shall change that over at some point to 18 years. How about that? Right. Agreed, agreed. I want to welcome everyone, any parents into our advocacy groups so that we can help them with our platform and locked them into research and into collaborations that they want to get involved with. I think we have to start with smaller steps. So as an as a group of adult premiers, we've got to start with the research that we want to be involved with, and the research that's going to impact our care and our health. I want to be there to advocate for anyone involved in this journey, any researcher, doctor, any parent and help them springboard from us so that they can do what we're doing and you know, start rolling the ball to promote these issues that they're experiencing in the longer term, the shorter term and help them promote the issues that they're facing. Very cool.

Ben: 41:35

I have a question. Since we're talking about follow up, I've had the chance to work in in a follow up clinic with with my mentor here in Miami, Dr. Bauer, and I have been witnessing, sadly enough, a lot of fragile Infant Syndrome where parents have gone through such a traumatic experience in the NICU that they're so protective of their child almost sometimes to their detriment, by not triggering language development, motor development. And it's it's one of the most ironic things to see because this, this is the most attention, the most passionate parents, the most dedicated parents, and yet, it may have a detrimental effect on the child. I am wondering if you could speak to that as a as a form of preterm infants growing up in your early sort of toddler years, how was your experience, I mean, I understand obviously, that you had a twin at the time that was alive, I'm not sure if that impacted also growing up around those years. And if you had any advice for parents who have preterm babies, and how to foster their growth and optimal development,

Unknown: 42:39

well, I thought we're sharing a phrase that we have in the UK, which is to be wrapped in bubble wrap, since where an individual or a child is protected, in case so much so that, you know, they're completely wrapped head to toe, you know, can't move their arms can't move their legs, you know, seeing through the little bubbles of bubble wrap. And I can fully understand seeing what I've seen as a student to see what those parents see within the NICU and that early journey of some individuals who are extremely unwell, or if they've lost a child before, they can be fearful and want to protect that child at all costs. And there are some situations where OS X Prems, particularly in our infancy, we acknowledge that we're at high risk of chest infections, we acknowledge we need ophthalmology screening written knowledge, we need newer assessments, because of our risk factors. that parents have already seen how resilient as this were resilient kids come in, we've seen how resilient that infants are in the neonatal unit, and they will continue to be resilient. And parents parents will do what they what their instincts tell them and we have to be ready to promote and advocate for the child that yes, they need to be kept safe, they need to have you know be kept away from people with you know, coughs and colds and to make sure they don't fall down the stairs as you would with any child. But be mindful that they're very resilient and they need all these opportunities to play to learn to you know, have a little trip and fall to get a stuffy nose but we kept a closer eye on because there is a risk of smaller airways and obviously high risk of having maybe more serious chest infections for example, but allowing them to go through these ages and stages and learn learn by doing and that's something my parents, we had the myself and my twins my reflection who was very unwell and severely disabled. So my parents would see me grow and develop trip and fall have a snotty nose. For my twin she would she would struggle and snotty nose would turn into pneumonia for her so she was at the very extreme end of spectrum for, you know, a premier who, whose premature journey has impacted their life really severely. So my parents, there's a lot of focus for my twin to enrich her life, knowing that it would be shorter, and to give us all opportunities. And I'm very grateful my parents gave us a very good upbringing, and helped me to foster this interest in health and education, they would answer my questions about my twin and about myself very openly and very honestly, which I thank them for greatly. But I do know, you know, other premiers may speak differently, they may have felt that they were more wrapped in bubble wrap, and, you know, you know, they were covered in cotton wool, and kept very, very safe. And that, that may impact them and how they grew up and how they made up their own children as well.

Daphna: 45:54

Very interesting, I really appreciate you sharing that piece of your childhood with us, I think it's something that I can already start to change in my practice, and that is reminding parents of how resilient their babies are even in the NICU. You know, we're always we're frequently hesitant to give positive information, you know, thinking, Oh, it's too positive, you know, me, you know, this, this baby's still so at risk, still so sick. But I think that we can still balance our information with information that's hopeful, and potentially change some of that kind of risk for vulnerable child syndrome by by reminding parents that their babies really are resilient. So I'm going to start doing that this week. Thank you. That

Ben: 46:50

is I tend to ask parents, I'm sorry. Go ahead. Yeah, we couldn't we couldn't hear you. And so I'm sorry. Just

Unknown: 46:56

saying that's fantastic. This is a, you know, this is a moment that our voice has been heard. And we're talking to the right people. This is amazing.

Ben: 47:10

I always ask parents after the other day of discharge, I said, Are you going to be willing to have another child after you've gone through this? And I get a variety of answers. And I don't ask the question for any particular purpose. I just I'm curious to see because it reflects a little bit on how they perceive their experience in the NICU. I am wondering if being an adult preemie if you've contemplated on your future and potentially parenthood, and does that provide you feel more prepared, more anxious? I'm just curious. And if you mean, and if you haven't thought about it, you can pass on that question. But I'm just wondering,

Unknown: 47:47

I have so within the adult premier community, you know, I can't pinpoint a particular research paper, but we've kind of got an underlying understanding that as we are born premature ourself, for variety of reasons, we are more likely to have infants of a premature ourself. And I think some links just aren't understood. You know, we reflect the mothers who have had premature babies are more likely to have another premature baby. And that has moved down into our generation as the adult preemies. And I think my experiences, my interests, and my healthcare experience will mean Nikki won't scare me. But I might scare them. Because I will ask so many questions. And I will be a mom who will very much struggle not to do my own babies, IV antibiotics, you know, that sort of thing. I will take it a step

Daphna: 48:40

up at a mama bear as we call them. That's great. That's awesome.

Ben: 48:48

Well, we're getting we're getting to the to the end of the interview. I mean, this is this is just so fascinating. I think this is really, I am so thankful for social media and for being able to connect with you and discuss these things, which I've never been able to discuss through my entire training and my short career as an attending. So I am very thankful. And I guess I want to invite everybody to really go follow you on on Twitter. There's other adult pre terms who are out there. And I think we need to grow this community and not for the purpose of likes and for the purpose of followers, but mostly for the purpose of connecting clinicians, nurses, therapists with the true witnesses and testimonies of what this means what we're doing in the NICU. And so I am very thankful. And I guess what I want to say is that if you need this podcast, we'll be open to your community, or whatever their needs are, and I'm more than happy to to give you airtime as much as you want to reach out to the NICU community throughout the globe and in any way that we can help so so thank you for that.

Unknown: 49:56

Thank you so much. You know, we'd never probably never thought it'd be fun Using social media, but some of the individuals I've met and yourselves, I may never have a chance to meet you face to face. But, you know, thank you to the Magic of Twitter, you know, we're not paid promotion. But if they want to pay us go for it. But I thank you for offering this platform. It's a real honor that you're, you know, I commented on your Twitter post about one of your early podcasts saying, Would you like to speak to an adult who was born prematurely, your response was so positive and so quick, and we're gaining,

Ben: 50:32

I was like, not letting go of this opportunity.

Unknown: 50:35

And it takes, you know, at the moment, we're still reaching out, but we're realizing, you know, people are reaching out to the the doctors, the parents, the researchers, they want to be involved, too, we just have to meet in the middle. And I'm so grateful that you offered this opportunity for me.

Daphna: 50:56

Well, like you said, you know, you feel like you, you know, you need us, but we need we need you guys just as much, if not more, to really challenge us about, you know, thinking ahead and anticipatory guidance and, you know, changing follow up, I think you're right, I think that's where we have to start, we have to start following up and seeing where the where the cards lie, and what what we can do to change outcomes.

Ben: 51:26

And I'm gonna say, I feel like I'm quoting this, this book by Daniel Kahneman on every episode. But then Thinking Fast and Slow. This this book is my Bible. But he talks about this cognitive bias of what you see is all there is, and we tend to, and I think for clinicians, having a discussion with, with Juliet and other people from the the adult preemie world creates a balance because as neonatologists, we see babies, they go home, or they don't go home, but they leave the hospital. And by staying in the hospital, or we see our babies, we're coming back in precarious situations, and we tend to develop this bias of what is this all for? What are we doing here? You know, all the babies that were allowing to survive are coming back to the hospital anyway. But it's not true. It's not true, because you are the example Juliet of No, there are babies who leave the NICU and who thrive and lead successful lives. But because we do not see that that's where this this what you see is all there is bias comes from, we lose that perception. And so I think this is why it is so important for us to connect with adult premiers just to to restore some faith and to reignite the spark and what is happening in the NICU when sometimes it can be a little bit sort of crushing when when the calls get tough. And I'm saying this post call so

Daphna: 52:49

he's had a tough week. Week and it's it's, it reminds us you know, what we're all working for, you know, every day in the hospital, every, all the research, right to optimize those few months in the in the NICU are really so that, you know, you can live yours, out there in the world and do amazing things. So we're really grateful for your time and you sharing your story. I know that's not easy. And so we we appreciate you.

Ben: 53:23

I want to circle back to close the loop by discussing again, this this research project you were involved in, I think you said 2018. But was there anything that came out of it? I mean, did they ever publish the results? Could could the listeners seek out that study?

Unknown: 53:39

So the paper that I was involved with is called outcomes in neonatology development of a core Outcome Set the neonatal research and the lead research with James Webb, who I had the pleasure of meeting during the consensus meeting in London. And then the results of this was they did a literature search, and they involved stakeholders, discussions, roundtables and things. And they found core outcomes that they want to present as every new narrative neonatal researcher needs to include in any research they do. And my involvement as an adult primary and the other two friends of mine involved. We brought in this perspective of our will we care about quality of life, we don't just care about being alive, we are so grateful for that and that is our first goal in life is we survived and how phenomenal is that and how proud we are of that, but also to make sure the discussion was had between the parents present the researchers, the doctors present that further in later outcome, not just did they breathe and did they, you know, open their bowels and did they need caffeine? There was we were instigating this conversation about Mental health and longer term outcomes.

Ben: 55:04

This is great. I think we should add on that. What do you think? Definitely.

Daphna: 55:08

Yeah, I agree just so people have a little bit more information if they don't get the chance to look it up. This was published in July just of 2020. Actually, in the results, identified 104 outcomes. In, you know, 12 outcomes were included in the final set for clinical trials survival, sepsis, and neck, brain injury and imaging, gross motor ability, cognitive ability, quality of life, adverse events, visual impairment, hearing impairment, retinopathy of prematurity, and chronic lung disease or BPD. So that gives us all a list to work off of

Ben: 55:50

definitely going to check this one out. Thank you guys so much, Julia. Thank you again, this was this was tremendous. I'm not sure who benefited more from this interview. You are us, but this was amazing. Thank you.

Unknown: 56:04

Yeah, it's just fantastic. Thank you so much for inviting me. Allow me this platform is such a pleasure to meet with you.

Ben: 56:11

Thank you. Thank you for listening to this week's episode of the incubator. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address the queue podcast@gmail.com. You can also message the show on Instagram or Twitter at NICU podcast. Personally, I am on Twitter at Dr. Nikhil spelled Dr. NICU, and Dafna is at Dr. Dafna. MD. Thanks again for listening and see you next time. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns, please see your primary care practitioner. Thank you