Episode 6: Straight Roads Don’t Make Skilful Drivers
Tags: Diversity, Life Lessons, Storytelling, Pregnancy, Technology

KATE: My name’s Kate Edwards and I lead efficacy and research at Pearson. Those probably sound like completely incomprehensible words to people who don’t work in the sector, but efficacy is all about having a focus on outcomes and being able to measure the impact that you’re having on those outcomes. And the research part of my team is all about applying evidence from the learning sciences to design and develop products so they are more likely to achieve those outcomes for the learners that we’re building products and services for.

For me I guess there’s been loads of steps and stages along the way and the one I think we’re going to talk about today, or we want to talk about today, happened a few years ago. We’d been through the early phases of how you can apply efficacy in education and I was really trying to broaden and deepen my understanding of the things we needed to do, both to make it more popular and comprehensible to people outside the sector as well as how we could build more effective teams capable of delivering efficacy in the context of education.

I’d become really interested in looking at how the medical sector, which is where the concept of efficacy derives from, how the medical sector applied efficacy and had gotten really interested in the work of Michael Mosley, who’s done an amazing job to really popularise medicine and medical science and different types of aspects of medicine. I was watching his programme Countdown to Life on television and was fascinated by some of the evidence-based interventions that he had been talking about and sort of explaining, popularising in many ways, about how children are born.

There was a reason for why I was so interested in this at the time and it was because I was also pregnant with my first child. I have a very rare condition, which meant that it was highly unlikely that I was ever going to have children and so I was not expecting to be pregnant at this time and was also quite fearful of the fact that because of this condition I may have a very early birth or potentially miscarry. And so watching this programme, that was really popularising and making sort of, the early stages of life really really understandable was quite difficult for me because I didn’t really know what was going to happen with my own pregnancy.

One of the things that I was really struck by, in terms of how Michael communicated so many of the ideas he was sharing, was how engaging it was, how simple they were, how relevant to people’s experiences, and I think that was one of the things that got me through the very early stages of my pregnancy. Everything from things like reading rhyming poetry and stories to your children when they’re in the womb can apparently help sooth them and calm them after they’re born because they’ve heard it so many times and they get used to the cadence and rhythm of your voice. They’ve heard it so many times in the womb, when they’re actually born then you can read them the same stories and it reminds them of being in the womb. And these emotional and really basic human bonds that are created through things like that can really really improve sleep patterns and children’s capacity to sleep and things like that when they’re born.

I was on a train on my way to London, en route to New York, a few weeks after I’d watching this programme, and felt a bit uncomfortable. It was hot and stifling on the train and I was sitting there and I just really couldn’t get comfortable and I realised something was not right. I got off the train, two stops from where I’d been staying at our house in Wales and rang my partner and realised that I was probably going into labour. He came and collected me from the station and took me straight to hospital and they took me straight up to the labour ward and made it quite clear that I was likely to be having a miscarriage.

They didn’t talk about the fact that I might be going into labour, they didn’t talk really about a baby and this was because I was only 23 weeks pregnant at the time and in the UK the legal limit for termination is actually 24 weeks and it’s because the life chances of babies born before that are very very slim.

We were absolutely just devastated at what they were telling us, and the thing that confused us was that she still had a heartbeat and so she wasn’t dead but we knew that things were not going to look very good. I don’t know why, what convinced me but I refused any of the pain relief that they offered me until I could speak to the consultant who knew and understood the condition that I’d got, to see if there was anything he could suggest that maybe might change what we’d been told. I don’t know why but I resolutely just stuck by my guns and said I’m not going to do anything until I’d spoken to him. I had to wait six and a half hours.

When he got back, he took the team of far-more junior people to one side and as I discovered, many months later, he had to explain to them that the life chances of babies of this gestation, you know evidence was increasingly showing that if the right series of interventions were put in place at the point at which the mother goes into labour there were growing chances that these babies might be able to survive. Things like the mother not having pain relief, things like the mother being given steroids to accelerate the development of the baby’s lungs and other medication to slow down the labour. And from that moment on, from his return, with this new body of evidence, things completely changed.

They stopped talking about miscarriage, they started talking about the fact that I was in labour. They tried to actually get a helicopter first and then eventually an ambulance to take me to a level three neonatal care unit, the nearest one was two and a half hours away from where I was. They did the two and a half hour drive in an hour and a half. My partner Mark arrived fifteen minutes later and our daughter was born fifteen minutes after that.

We saw her for four and a half minutes, during which time she was intubated by the neonatal rescue team that came to the labour ward to be there when she was born and then she was taken away. We didn’t know for about twelve hours whether she’d survived or not.

They were very kind, they put us into a room on the labour ward, but all that night we kept hearing babies being born and we didn’t know if ours was alive. The following lunchtime we were taken through to the unit and we walked in and it was just full of… beeping. And there were so many procedures about how you wash your hands and what you could touch and what you can’t and you don’t want to look at anything because you’re just terrified about what you’re going to see, what you’re going to feel… and they told us it was going to be really difficult, so we knew what was going to happen or knew what might come but you can not expect what you eventually see… but I looked down the ward and they told us that, they told us that her incubator was in the corner because it was the quietest corner and she was the youngest baby that was in there and I looked down, I looked down the ward and…all I could see were trees and they decorated the end of the ward with oak trees floor to ceiling. It just, just somehow made it bearable… but we were taken to the incubator and it was there we met Dr Joanna Webb, who’s just the most amazing, compassionate, articulate, driven woman I’ve ever come across and she led the team that night when Olivia was born and she sat us down and explained that Olivia had had a thirty percent chance of surviving the first twenty-four hours and that she had a fifty percent chance of getting to term from the point we were now at.

Based on evidence about how medical science had seen about the life chances of babies born that early, there were a whole series of things that we could actually do that could help improve chances for Olivia. Covering the incubator in thick dark cloths to make it dark and make it quiet, speaking quietly, hopefully providing Olivia with my milk. And then they came to the sort of critical point in the whole sort of discussion… what they wanted to do was to take Olivia out of the incubator with all of the incredibly complicated forms of life support systems that she was on, and have her so that she could be held skin to skin — because again, evidence was increasingly showing that although the machines could keep Olivia alive the only thing that was really going to enable her to live were the social and emotional and relational bonds that are created between a mother and a child. And it was those things that would reduce the cortisol, reduce the stress, reduce the invasive impact that the machines were having on her so that she would actually bond with humans as well as be kept alive by the machines. They told us that although the machines were keeping her alive, they were also the things that were going to kill her.

It was then that we began to meet the rest of the team and this was the thing that was so staggering; everybody in that unit knew what their role was in terms of contributing to improving the outcomes for those babies. Everybody from how the reception team greeted and dealt with the parents who were clearly absolutely traumatised by what they were going through, to the role of the cleaners in terms of making the most sterile and hygienically clean environment that could be possible for the babies to actually live in, to the team of nurses, nurse practitioners and consultants who came from everywhere across the world.

Flo was from the Philippines, Aron and Nitin were both from India and had moved to the UK because of their passion for neonatology, Jo Webb herself was from the UK as was Jean who had formally run the unit and Geraint who was the new leader but together across all of those different communities of administrative staff, the cleaners, the nurses, the nurse practitioners, everybody was given a voice in terms of contributing insight into what would improve the chances for those babies. You know, it took weeks of being in that unit to actually be able to see that it was that culture of innovation, absolute focus on the purpose and the passion that they were applying to what they did, as well as a completely egalitarian flat way of understanding where insight could come from, we didn’t realise that it was that that really distinctive and different.

You know week by week we sat there and we worked with them and we were like sponges, everything they told us we listened to, we internalised, we discussed with them and we applied, and they included us in all of those decisions too. It wasn’t that the medical community of experts were sort of over here and the parents were somehow over here not really understanding, they included us in the decision-making process and we had to make some incredibly difficult decisions about her care and trade-offs. It was an incredibly privileged experience to have seen how they worked, how they collaborated, what they did together and Olivia lived as a consequence of how they managed and ran that team in that hospital.

I hadn’t realised at the time but it gave me the sort of baptism-of-fire insight that I had been looking for, prior to all of this happening, into some of the things we needed to do to make efficacy and education more accessible, more transparent and more successful. I think the learnings that I took away from that intense personal time were that you can have really deeply embedded unconscious biases, such as those that the original team that said I was having a miscarriage had, you could not understand where they come from, they can be because of how you’ve been trained or because of your experiences in life but you’ve got to be really aware of what those things are. We’ve got to try and educate ourselves about our own blind spots so that we don’t inadvertently reduce the chances, be they life chances or educational chances for people. It gave me insight into unintended consequences of those biases, how you can really really marginalise the opportunities for people unless you’re aware of what those things actually are.

But the experience also gave me such belief in evidence-based approaches and how if you can look at evidence and continue to look at the cutting edge of evidence about what we can learn and what is possible, you can really, really transform chances for people. You can do that in the context of medicine about life chances, and you can do it in the context of educational and social and learning chances in education. And you know, critically it’s importance of having cultures of learning and innovation, cultures where everybody is considered to be playing a role in the process of innovation and everybody should be looking to find ways to up-skill and improve what they know so they can support the innovation process and that was something this culture in the neonatal intensive care unit that was just so phenomenal. Every nurse there knew about the evidence and the research that underpinned why they were doing things in the way that they were.

Every nurse there talked passionately about courses they’d been on or the next course they were going to go on so they would know more about how they could improve. And critically, this notion of the diverse team — there were so many different countries, so many different nationalities, represented there, so many different sets of experiences of different neonatal intensive care units that all of these teams had worked in. From New Zealand to the Philippines to parts of America and Australia, it was just an incredibly diverse and multicultural environment and that diversity and that range of experiences was again something that was quite unique. It brought a very special perspective and a very outcomes perspective that you could take all these people from different cultures and very different experiences but together their view about how to improve the chances for these babies was just phenomenal. And I think the final thing for me was what I learned about the interaction between humans and machines.

There is this great fear, I think, in the education sector with the introduction of technology into learning environments, and the loss of control for teachers and students as more artificially intelligent systems are created, and the thing that I really learned was that there are things that machines can do, there are very specific roles that they can bring that we have to value and celebrate in the future. But what they actually enable is for humans to become even more human in terms of the contribution and the role that we have to play.

HOST: “A mouse took a walk in a deep dark wood, the fox saw the mouse and the mouse looked good” This is the opening line of the children’s book The Gruffalo by Julia Donaldson. It’s the line that ran around and around in Kate’s head as she stared into Olivia’s incubator in the tree-lined neonatal intensive care unit in those crucial hours.

As Kate stood there, transfixed by her daughter, but still in a state of shock about the path they had taken to parenthood, she remembered something. In her search to find out how other sectors had made efficacy and research popular and accessible she had come across research indicating that reading rhyming poems and stories to children while still in the womb was showing indications that reading the same poem to them after they had been born would have a calming effect on them. It would remind them of when they were in the womb. Kate had been reading the Gruffalo to Olivia in the weeks leading up to her birth. That first night in hospital she took the decision to begin reading it to Olivia again, and would do so, again and again, night after night.

Alongside the remarkable work of the neonatal team in Swansea, and the wider opportunities for parent-led care that Kate and her partner Mark were introduced to, Kate’s hope was that the simple but effective action of reading to her child would play its own small part in helping to keep Olivia alive.

Olivia eventually left hospital on her due date of 16 November 2016. She was the most premature baby that the unit had ever tried to take out of the incubator to do skin-to-skin and the first baby born at 23 weeks they had been able to get off the internal ventilator without the use of steroids, the use of which can lead to developmental delays. She left hospital with no evidence of any brain bleeds and without being on any form of breathing support. She’s just passed her second birthday. In the words of her mother, Olivia didn’t just survive, she’s thrived.

CREDITS

Nevertheless is a Storythings production, series producer is Renay Richardson, executive producers are Nathan Martin and Anjali Ramachandran, music and sound design by Jason Oberholtzer and Michael Simonelli, supported by Pearson and presented by me Leigh Alexander.

For this week’s unsung hero we’re throwing back to Kate.

KATE: There are at least three unsung heroes of this story, they span the emergency services and NHS frontline staff. First off is the female ambulance driver who the drove the last hour of the journey to hospital with such skill and speed, I don’t even know your name but it was you who got me to the level three neonatal intensive care unit before Olivia was born, thus increasing her chances for survival. Second is Gemma, the nurse practitioner who co-led the retrieval team the night Olivia was born alongside Dr Joanna Webb. She helped Liv to make the necessary progress through those first critical twenty-four hours. The mother of a premature baby herself, Gemma was so inspired by the team who helped her daughter to live she decided to pursue a career in neonatology. And then there is Rhian, what words can I use to sing your praises and thank you other than to say not only is Rhian one of the nurses who helped save Gemma’s daughter’s life, so inspirational Gemma followed her, she was also the nurse who’s skilful hands transitioned Olivia off the internal ventilator, assembling and reassembling breathing equipment on a baby no bigger than your hand, without her missing a breath. She also helped to make the experience of being in intensive care, one filled with a few laughs and not just tears. It’s the purpose and passion of people like them that went into making this team a truly great team without whom Olivia would not be alive.