CARE OUT LOUD
Interview with Lauren Ingledow - Part 1
Mary Coughlin:
Well, welcome Lauren. I'm so wicked excited and honored that you're going to share your time and your insights and wisdom with me today and all of those folks that are interested in following hashtag care out loud podcast. So so thank you so very much for coming.
Lauren Ingledow:
Thank you for the invitation. I'm really excited to chat with you.
Mary Coughlin:
Well, I guess, you know, just kind of coming out of the gate I thought it might be helpful for folks to just really kind of understand how it is that you and I connected, you know, how it is that you reached out and right. Am I, am I pulling the tail correctly?
Lauren Ingledow:
Yeah, sorry. I. I'm part of the Adult Pre Meat Advocacy Network, which is a group that aims to link adults born prematurely, researchers parents, be that of babies, children or adults born pre term, so that we have a space to speak freely about the possible impacts of prematurity, and really so that we can all learn from each other and advocate for the need for wider awareness surrounding prematurity.
So I think one of the things that has really flagged up for me. is the awareness of the impact of being in NICU. So being born too early into an environment that we're not quite ready for the impacts of being surrounded by artificial lighting and having procedures done, such as necessary procedures, such as heel pricks to monitor our health, but how.
Looking back over my life, how maybe I react to things that are slightly different to those around me, and maybe trying to put the jigsaw together as to maybe how this all fits in together. So what I noticed is that Many of the adults born prematurely, we're all saying similar things. So for example, maybe we have light sensitivities or we struggle with enclosed spaces being surrounded by lots of different people.
There's quite a high prevalence of diagnoses with autism or attention deficit disorder and also a number of health conditions. And what I was realizing is that Really, this is trauma. And I suppose I started looking on the internet for trauma informed care and what I was bumping up against was it's recognized within children, within ACEs, children that have Sadly suffered abuse also domestic violence, drug abuse, alcohol abuse.
But there seemed to be a real kind of missing chapter relating to NICU. So I'm quite friendly with Mandy Daly, who's a member of NIDCAP. And she very kindly, I had a chat with her about this. And she very kindly gave me your contact details. So. I thought I would be brave and reach out and just to see if you had any insights and would be willing to share any information with us.
Mary Coughlin:
And I'm so grateful that Mandy did make that connection because I had no idea about your organization. And it was a really amazing experience for me to actually connect with someone who's had this lived experience and is really doing the work to try and unbundle and better understand how that very early life experience has played out across your, your life story.
And I think also one of the things that was really cool was you know, from a kind of a nerdy perspective from a you know, I love to read and investigate and curate research to see that there was a lot of literature out there that was talking about. You know, medical trauma, specifically related to the NICU experience or other types of early life adversity.
And many of my, the folks that I speak to on a regular basis, hear me talk about the research team out of Northern Italy, Provenze, Monterosso, and all of those guys who really zeroed in on the trauma experience of the NICU patient and the NICU patient population. To really be able to speak with you, Lauren, and get that, that lived experience has been incredibly invaluable.
And I'm blessed that you've also made the connection with your with your community. And really, I think this is an opportunity for us. You know, kind of in this movement that we're both on right to to really improve the quality of life of those individuals that have endured and survived this experience, but also to take that awareness and insight.
and reevaluate and reframe how we care for these, this incredibly fragile population, both from an infant experience, but also from a family parent experience, because you've, you've also shared a lot of, you know, what this experience was like for your mom, who you know, again, was kind of like doing the best that she could with what she.
She knew and she had, but listening to her gut as well and really pursuing that gut feeling that no, something, you know, there's something here. There's a, there's a gap here. And how can I best support my baby? You know, as she's growing and evolving into a, you know, a toddler, a young child and, and a young woman.
Lauren Ingledow:
For me, I mean, I'm 34 now, but for me, it's, it's heartbreaking to think that my, my mum's background is she's a nurse. So she did have a level of medical. knowledge, which has helped her, I'm sure, but it's going from a parental gut instinct that actually my baby wasn't born at term. They weren't developmentally ready to be born and their Constantly having to play catch up, yet the reaction she received from healthcare professionals and my sort of early school providers was that really the insinuation was that she, she was overprotective and perhaps even mentally unwell herself, because the belief was that, you know, yes, they're all a bit delayed, but don't worry, they'll catch up by 2345 and there's You know, there's nothing to worry about when I think now the evidence is showing that whilst each individual Prem needs to be taken as an individual in what is going to impact them, everyone needs recognition to have support in the areas that they, they, they need.
Yeah.
Mary Coughlin:
Well, I mean, so you know, so you've had this experience. You've been struggling with your own challenges. Physically, emotionally. And what was it that you know? How did you put the pieces together? I love that example that you used a few minutes ago about a jigsaw. How were you able to put the pieces together and decide?
You know what? I need to do something. I need to champion my own life, my own life experience and quite possibly me. Yeah. champion others that have had a similar trajectory and are experiencing similar challenges and frustration. So how did you come to create the Adult Preemie Advocacy Network?
Lauren Ingledow:
So I suppose Going back over my life, I've always had a sense that I was different and that goes right back to as I suppose preschool age, learning fine motor skills, trying to tie my shoelaces, things like that.
I was really acutely aware of this sense from adults that I, I was frustrating them because I was It was slow and it took me longer to do things. So I suppose that sense has been there from a young age, but I wasn't able to kind of articulate, you know, why are you treating me a little bit differently to others?
Why is your reaction a bit different? That probably followed me all the way through school, in that I didn't... meet a set pattern in my education profile. So my teachers couldn't understand, for example, why I have a head for algebra. So kind of being able to look at the numbers and put things together. But my mental arithmetic is appalling.
I still can't do my times tables. I have to use my fingers. But from a maths teacher's point of view, they think, well, if you can do that, why on earth can't you? add up in your head or that kind of thing. I suppose from a social perspective, I, I have had friends throughout my life, but I do struggle to maintain
friendships.
I'm quite introverted, so I've never been someone that wants to go to big loud parties and be really extroverted. So from that sense also felt a little bit different. I suppose the big crunch for me was when I was 26, I suddenly became really unwell, I was losing weight really rapidly. So I lost about six kilos over the course of a few months.
I'm quite lucky. I I've never been overweight. So. Whilst that kind of weight loss doesn't sound significant, for someone with my build, I'm very short and always been quite thin, it was pretty dramatic. But my only other symptom was that I was really fatigued. As a canine hydrotherapist, I was able, I was managing to go to work, but that was all I could do.
I was getting up, going to work, coming home, falling asleep again, because I just couldn't cope. And the only other thing was that my joints were hurting, so I know I suffer from hypermobility, which I have a genetic connection for, but I do wonder if there's a link. With prematurity there with just the development of your connective tissue as well.
So because of all these things, I'd gone to my GP primarily for the joint pain and they had said, Oh, well, you haven't been for ages because I hadn't. had anything wrong. They said, why don't we just run a general blood screen for you to see what's going on. They called me back in and really the next thing I knew was I was being told by my GP that there was a chance I'd need a kidney transplant and that I had diabetes.
So that kind of kicked everything off. I went to the main hospital I was referred on to endocrinologist and a kidney specialist. And that was really the first time that anyone had sat down and listened to me when I'd said, I don't know if this is relevant, but I was born at a very low birth weight and gave them my gestation of 26 weeks.
And both of them, when. Yeah, you might be on to something here. It was the first time anyone had ever acknowledged that there may be an issue. So my endocrinologist was fantastic. She performed the tests for type 1 diabetes because they were so concerned with the rapid weight loss that I might have late onset type 1 diabetes.
Fortunately, that came back as negative. So they treated, or initially treated me as type 2 diabetic. But the issue with that was that my GP had put me onto a drug called metformin, which is a really common prescription for type 2 diabetics. But what they hadn't factored into the situation is that drug is excellent at promoting weight loss.
So whilst, yeah, it was lowering my glucose levels, it was also continuing to exacerbate this weight loss that I was suffering from. So the endocrinologist went, no, please stop taking that. I'll give you something else to take and that was fine. And to be honest, the same thing happened with my kidneys. My primary care physician had put me on Ramapril, which is excellent at stopping protein leak via your urine.
But it affects your kidney filtration rate. So my kidney filtration rate had gone from I think around stage three. from when they'd done the initial blood test. It was after they monitored me again at two weeks and it was still dropping like a stone. So the consultant said, nope, please again, stop, stop taking that.
He said, I think we'll try you without it. Yeah, and hopefully there was a lot of discussion surrounding work and stress levels and I'm an insomniac, so tiredness and fatigue has always been a bit of an issue. And also the connection with possibly an underlying virus that was maybe all coming together to create these set of symptoms.
So he said, well, stop taking it and I'll review you in a couple of weeks. And if we need to take further action, we will. Luckily it was okay. And it's come back up to, I mean, it's, it's subclinical and the advice that he's given my GP, which ironically they don't listen to is that if my kidney filtration rate has dropped.
They've changed my referral criteria. So it's lower than the what would be considered average for referral.
Mary Coughlin:
Yeah. I mean, that's fascinating. I mean, just recently I've read some articles that talk about you know, the, the number of nephrons. Those are the number of cells that are in your kidneys.
Are impacted by premature birth that and so kind of coming out of the gate. You're already operating at a different reference range, right? You know, I mean, for your lab values and for what you're, you know what your function is going to be capable of. So I mean, big kudos to these you know, the metabolic doc and the and the renal doc for really acknowledging that there may be a connection here.
Okay. Because of course, you know, when you think just embryologically, you know how all your organs develop and evolve and grow over the gestational period. And then you have this acute event where the individual is now being born prematurely. All of the. physiologic stress of that preterm birth is going to negatively affect that ongoing, the word they use is organogenesis, right?
The development of the organs. And that, you know, kind of something happens and the development is is stalled or or even arrested, you know, stopped as a consequence. And so I think it's really cool that these folks were able to identify that. And I think, you know, what's impressive to me is that you're sharing this paucity of understanding and knowledge, you know, at that adult healthcare provider level of the consequences, right?
And we're seeing now and and this, we've had lots of conversations about this, you know, that there's more research coming out about the needs of the adult former premature person. And that
there's even recommendations that maybe subspecialty. of, you know, general health care, right?
Lauren Ingledow:
Yeah, certainly. I think the big, the big dream is to have prematurity as, as you say, as a specialist clinic where people can be monitored because really fundamentally that's what we need is ongoing consistent monitoring to pick up if there are any issues and then to take positive action to reduce.
These impacts going forward. And to link back to what we were saying about the group, is that me having knowledge now of your gestation age, as an example, correlating to the number of nephrons you have in your kidneys, to bring that back to a lifestyle management choice of something that adult prems can do for themselves is the use of anti inflammatories.
So I was quite happily popping anti inflammatories regularly for my joint pain, not understanding that this potentially is going to impact my kidneys. And there's little things that, it's a two way street, isn't it? So, one, as premature people, we need to have access to the information that's going to benefit us.
that means we can make appropriate and informed lifestyle choices. In the end we're all human and we are, we're going to make our own choices as to what is important to us as individuals. But it's linking all that then again to the healthcare providers to make sure that we're all On the same page and doing what we can to help each other.
Mary Coughlin:
This is amazing information, Lauren. I just wanted to tell you too.
Lauren Ingledow:
I mean, Oh, good. I'm glad this is helpful.
Mary Coughlin:
It really and truly is. I think you know, I, I do want to kind of circle back with, you know, this, you know, these discoveries that you are making about how your own life, your own health has been impacted.
I mean, it almost sounds like you're still like, Is it, you know, you're, you're, you're curious, you know, has my premature birth been a factor? In my adult health and and it sounded like you were saying from what the metabolic person the endocrine person and the renal person were saying was maybe the first time that you got some kind of validation that maybe some deed that was yeah.
Lauren Ingledow:
So, I mean, to be honest about it, I've, I suppose, random periods of my life, I've, like I think everyone else in the group, I've googled, you know. I think I've got something going on, let me have a look. And I was coming up, I mean this would be early 2000s, possibly and I was coming up with like the odd paper from, the odd one from the 1980s, maybe the 1990s, but there wasn't this bulk of evidence for me to be able to turn to someone, apart from my mum, and go, I think I'm onto something here.
And I was really, before we joined, I, well, I started the Adult Preemie Advocacy Network and I met Juliette and Jeff, who were really the first other adult prems I'd spoken to. I was starting to believe that perhaps, did I have a mental health condition? Was this actually me? Was it me not? able to, to cope with, with real life and the expectations that there were, was it a fundamental flaw?
So to meet, I mean, Juliet and to talk, start to speak to them and our life stories are very different. We've all had different experiences, but finding these key factors and the fact that we were butting up against the same lack of recognition, you know, prematurity doesn't matter. You've, you have caught up by the age of five, you know, it's Yeah.
You know, it's, it's you, it's not that there's any genuine medical reason why you, you feel like this. Wow. And to meet other people and finally go, wow, you know, I don't like the use of the word crazy, but that was how it felt. Yeah. I'm not crazy.
Mary Coughlin:
Yeah. I mean, I can't even imagine what it must've been feeling like.
I mean, almost like getting gaslighted, you know that you're having these real, experiences, but there's such a gap that people just absolutely are completely unaware and unconcerned about any kind of a connection. I mean, gee whiz, bless all of you that have endured this, but again, you know, it really makes me admire You know, the courage and the tenacity that you had, Lauren, to just, you know, continue to move forward and, and, and really kind of organize this advocacy network as you started to make the connections and say, I'm not crazy, as you said, and that there are some common denominators in these experiences, these medical experiences.
That may actually be founded in truth, maybe founded in, in our biology as a consequence of being born premature. So what, when you started the advocacy network was it just the three of you guys was it just you, Juliet and john or how did that happen.
Lauren Ingledow:
Yeah, so we, we have a, run a sister, if you like, Facebook group, which is purely for adults born prematurely to share their experiences in a private place.
Because, as you say, we've experienced this buffer, this brick wall, I think. I'm getting better at talking publicly about how this has impacted me. But I think there are still many members of the group that are, they're frightened. They feel like they're going, if they continue to say it out loud, I'm going to hit this brick wall.
And that for them, it doesn't, it's not having a positive impact on their life. So they're shutting down a little bit on it. Yeah. But from. Chatting to Jeff and Juliet was that gradually, gradually building up these members of consistently people were finding us and joining was that we're all saying the same thing.
And there's obviously a need to try and get this out into the wider sphere of knowledge. Yeah, I think we just thought. You know what? Why not? You know, premature babies, we're always exalted as resilient and fighters. And, and I think what people don't realise is that, I always say this in my lived experience talks, is that, sadly, that fight...
that keeps us alive. You don't, there's no point at the moment where you can take off your cape and put down your shield and go, yeah, I can let that go now. The battle is still ongoing. You know, I, my dream is to actually let go of the advocacy side of the group in terms of. get to a point where we are recognized, it is acknowledged, it is, it's just commonplace to be monitored and in an education setting teachers are aware throughout your school life that there may be things you struggle with, but also to emphasize the positives.
I think one of the things that gets fed back to me is that the negativity and the criticism we experience through not quite meeting the expected standards and the impact that that it does it has on your self esteem and your belief in being able to move forward and achieve and that filtrates then again.
from school into your ability to attend college and university, if that's something you would like to do, and then also feeding into your work life. If, try and explain this, if you, if you've been squashed sort of throughout your life in terms of what people you're only able to achieve, rather than given, Encouragement to look at, okay, yeah, maybe you find mental arithmetic hard, but actually you're really good at English or you are good at history and comparing and contrasting sources, it's channeling and the same with everyone in the population is to find people's strengths and channel those into things people find rewarding and ultimately So to achieve your potential in life and to feel content and happy with the work that you're doing.
Right.
Mary Coughlin: I, I, oh my goodness, you articulated that so beautifully. It's really, we're really just inviting people to be loving, kind, compassionate, open hearted, non judgmental. That everyone, you know, is on their own path and that path needs to be honored and acknowledged and not criticized and, and oppressed or suppressed.
And so I think, you know, the work that you're doing is amazing. I mean, you know, to even create this community where folks can feel seen and feel validated. Is it must be just you know, transformational for many of these people. I mean, I, I go on the site on your Facebook group and read the comments and read that that sense of camaraderie support.
I mean, also frustration. But I think, you know, that frustration. Piece of it is channeled right towards really making the changes that are necessary within healthcare within society within education. You know, all of it so that individuals coming up with this history. Don't have to endure the same experiences.
