PART I - DILEMMAS
BEFORE YOU BEGIN THE HOST WILL READ THE FOLLOWING INSTRUCTIONS:
1. At the bottom of this page you will find four medical dilemma stories. Please choose one. The story you choose will be the theme for your discussion event - stimulating thoughts and provoking ideas.
2. Someone from your group reads the short story out loud. Alternatively you can play the recording we’ve provided to the group.
3. The rest of the participants simply listen.
4. When the text has finished, click the Egg Card link on the left. This will lead you to the game page.
"Imagine it, me a short Black dark-skinned woman speaking in low even tones—just me, no advocate, no husband, no ally, just me speaking and being believed. Why should that be political? My first pregnancy, I didn’t know much, didn’t really do a birth plan and they had said because I was overweight, overdue and 40, that an induction may be necessary. Junior was 3 weeks late so when they said it was time to induce, I didn’t complain. It started too quick though. They said 24 hours but 2 hours in, my heart was beating out of my chest, I had contractions and I was alone since they told Marvin to go home after they gave me the pessary. I called the nurse: ‘I’m in pain. Is it supposed to feel like this. I swear my contractions have started’. She looked me dead in the face and said it’s supposed to hurt. Those aren’t contractions. Too early. that’s not how it works. She left without letting me say anything else. It happened so quick it was almost like it didn’t happen. I didn’t make a fuss. I was just there groaning on the bed. Didn’t know what else to do. I opened an app on my phone, started to time the contractions, 5 mins, 4 mins, 2 mins. The gynaecologist came round later. I told her. She too said ‘Too soon’ but decided to check anyway. Next thing I know she’s shouting instructions to people; they are moving me to a different ward. I was right, I was in labour but now the baby was in distress so they injected me with something to slow down my heartbeat and … it’s all a blur now. But the fear… it stays with me. I could have lost him. He could have lost me. All because they wouldn’t believe me when I spoke. …. When I went in this time, I was ready to fight. Isn’t that a shame, that at 40 weeks pregnant, I am preparing myself to fight people whose job it is to care for me because… I don’t want to be that person…. But… I will need to be convinced that being Black has nothing to do with my voice being either dismissed as though inaudible or heard only in the context of someone saying my insistence on my rights are aggressive. How else do you explain that Black women are 5 times more likely to die in childbirth in the UK? Why do I know this figure? My plan is a water birth, I have a playlist ready, Erykah Badu, Jill Scott, Goapele, smooth good music. Everything was prepped with the midwife. I’ve reminded them several times; I won’t be repeating the induction saga and if I have to then it can’t be the fast-working pessary thing. They ask us to come in at 10pm. Baby is 3 days late. We arrive and no one sees us for 4 hours. When the doctor comes, he’s immediately in a strop because the notes say I don’t want the regular induction procedure. He doesn’t ask why. He repeats that there aren’t enough staff on the ward and if I want to be seen I should do as he says otherwise, I’m prolonging the process and taking beds from those who need it. I ask him to explain the other options, he becomes irritated and doesn’t care to hide it. Mind you, he still doesn’t explain. It's as though he feels he has spoken and his position should provide enough assurance so that any question I have or any dissent is disrespectful. I don’t know how else to explain why he spoke to us like we were stupid. Which of these doctors if they were ill would allow another doc to tell them, here is what we are doing full stop. No discussion, no choices, just blam. I don’t budge. He turns to leave and says ‘I’ll give you space to think about it. Help me help you”. When he sends the midwife later on, my answer was still no. That’s the last I see of him. The next doctor starts where they all start but listens when I counter. They try the one with the rods but it didn’t go in well. My cervix is bent or something like that and when they come with those giant forceps I am like ‘that is not going to work’. They see how much pain I am in and go back to the drawing board. The pessary rares its head again. But the doctor has spoken to another doctor and they suggest half of the dose I had with the first pregnancy and a closer monitoring. I can live with that so I surrender now that I am making an actual informed choice. Labour comes slower this time. I tell Marvin to double check that he has my tunes and he taps on the bag and holds my hand as they wheel me to the birthing suite. Past the birthing suite. We exchange a look when we go past. There’s no emergency. No reason not to stick to the plan we have had for months. He squeezes my hand and I squeeze his. I don’t complain. Don’t say anything. Mum always said to choose my battles."
· INDUCTION by Tolu Agbelusi
Read by Tolu Agbelusi
· PATIENCE by Emily Underwood-Lee
"I’ve been asked how I am by friends, family, colleagues, acquaintances, support groups and strangers. I’ve been asked how I am by nurses, doctors, medical receptionists, radiologists, consultants, physiotherapists, and other medics. I’ve been asked to undress. I’ve had my picture taken. I’ve had your picture taken both inside my body and out. I’ve had my blood taken. I’ve had small chunks of my flesh taken. I’ve had my urine taken. I’ve had my stools taken. I’ve had my lump taken. I’ve had my breast taken. I’ve had my baby taken out. Today I’m taking it all back. Some of this may not be real but all of it is true. I grew some lumps. I grew some lumps. I grew some lumps, one was a baby, two were something more sinister. As my baby bump grew so did my breast bump. It’s just my milk I thought, no need to worry, it’s just my milk for my baby. I’m a full, fecund, fertile woman, I’m curved and rounded and sexy. I’m mother earth and an earth mother. I’m eating my five, six, seven, eight a day. All organic. I’m not having coffee, tea, alcohol, cigarettes, sugar, meat, or fish. I’m drinking at least two litres of filtered water a day. I’m taking vitamins D, E, C, and K. B vitamins 1, 2, 3, 6 and 12. folic acid, biotin, pantothenic acid, carotenoids, iron, magnesium, zinc, iodine, copper and selenium. I’m doing yoga and I’m breathing deeply, what could possibly go wrong?"
Read by Cecilia Madanes
· MORNING SICKNESS
by Francesca Dale
"If I’m being honest, I don’t really want to write this. But I also know that being honest is important. Being honest is what helps things change. Why don’t I want to write this? Because it’s a messy story and I pride myself on being diligent and organised, and to the outside world I am. As I neared 35 I knew I wanted to try and have a baby. I felt like I’d got to a point where I’d achieved enough in my career to take a break and I also knew that 35 was the magic number. After 35 it all gets very difficult unless you’re Madonna. That was what I’d picked up. I’m not going to pretend to you that I was well read and versed on the matter. I know the reality is much, much more complex. But this is the level I was operating on. I downloaded a period tracker app and came off the contraceptive pill. At this point, I didn’t give it much thought. It all seemed incredibly remote. You spend so long making sure you don’t get pregnant that my mindset failed to keep up. No, I didn’t start taking Folic acid, or give up alcohol, I didn’t change anything. The idea of having a baby was very far away. About a month after I came off the pill I went to France for work. We worked during the day and in the evening we socialised - plenty of soft cheese and plenty of red wine. I’d completely forgotten about the pregnancy thing. A few days after I got back, I woke up one morning and felt extremely nauseous. I write ‘extremely nauseous’ but it’s a poor attempt at describing how I felt. I tried to lift up my head from the pillow and found that made it worse, much worse. It felt like the room was spinning constantly. For the next three days I lay in bed unable to move without feeling sick. I didn’t eat or drink anything. I tried to take sips of water but even that was too much. I’d never experienced anything like it. I’d seen ‘Morning Sickness’ portrayed on tv and film - women throwing up once in the toilet bowl in the morning and then neatly carrying on with the rest of the day. This was no throwing up, but feeling sick all morning, all afternoon, all evening and all night. My life as I knew it ground to a halt. I’m not sure how I got to the doctor’s surgery. But when I did, I weighed seven stone and the skin was peeling off my lips. I told the female GP I might be pregnant. I hadn’t done a test, I hadn’t been able to get out of bed. I felt stupid, this wasn’t how it was supposed to be. Congratulations you’re pregnant she said. If this was what pregnancy felt like, I wasn’t going to get though it. You’re severely dehydrated, she said. You need to start eating and drinking or I’ll have to send you to hospital and put you on a drip. I felt told off. She prescribed me some anti sickness tablets and booked me in to see her the following week. I don’t remember thinking about a baby. But I do remember thinking - thank god for the tablets, I’ve got something that will help me. I asked her no questions about them and she volunteered no information. After two or three days on the tablets I started to feel better. At the next appointment I took my partner with me. Partly for moral support, partly to show her I had one. You need to stop taking the tablets now, she said. Try and make me, I thought. I’ve got two more boxes at home. You need to manage it now - ginger is very good, plain crackers, she said. You what? I thought. Are you f***ing joking? I couldn’t move my head without feeling nauseous before and you’re telling me some crystallised ginger will help. When I told my partner I was writing this piece, he remembered the doctor saying to me - I’m not worried about the baby, the baby will do what it needs to do, I’m worried about you. When I got home, I looked at the tablets. Those lovely tablets that had stopped the world spinning. But the doctor had told me to stop taking them. There must be a reason she’d told me to stop taking them. Should I not have taken them in the first place? Now that I was functioning again, what did I know about taking medicines in pregnancy? Thalidomide. I think that’s what most people know. But in the white heat of how things had played out, there was no sit down and discuss moment. I was too unwell and the doctor had managed my sickness until I could mentally get back in the room. Now I was back in the room, she was telling me to stop taking the tablets. My partner went to the shops and bought every morning sickness cure he’d read about. I cried. I still didn’t think about the baby. But I decided not to take anymore tablets, because the doctor had told me not to. The thought of the nausea returning was frightening. How was I going to get through this chewing on a piece of f***ing crystallised ginger? I was lucky, within a couple of weeks I recovered. I tentatively went back to work. I started to think about the baby. I was also lucky, because I was pregnant at the exact time as Kate Middleton was with her first child and as she was admitted to hospital for Hyperemesis Gravidarum, there was a lot in the media about this condition and morning sickness generally. When I started working on this project with Dirty Market and Doctor Sarah Stock at Wellcome I came to realise that it’s probably the case that the tablets I took have not been tested on pregnant women. It’s difficult to think about. Did I/Have I put my unborn child at risk? But if I hadn’t put myself first I’m not sure I would’ve made it through."
Read by Francesca Dale
(contains some strong language)
· ECMO by Georgina Sowerby
"This thing about choice at the heart of all this.. it’s more about how decisions actually get made. For me, it goes back to that moment about 24 hours after E’s birth. She was on a flutter ventilator and under heat lamps. She looked like her skin was paper thin and she would burn, like she was being burned. It felt like she was suspended on a very long thin thread, very far away. I was in shock and pain. The moment when it had all gone wrong was crazy - the team were screaming at each other, the anaesthetic wouldn’t take and the consultant had just lost his own baby in childbirth a few weeks before - this was his first night back on - a fan was broken in the operating theatre and he was shouting “I can’t work in this “ or something. He said to J after, that saving E had been very important to him - he was crying. Another surgeon who had been on that night, an Egyptian guy - later said he was confused as to why she was so sick. When I came around from the anaesthetic, I could hear the midwife on the phone absolutely shellshocked, breathing out, saying “I’ve not had a night like that for a long time”. There was a sense something had gone very wrong. Anyway the day after, I was taken in the wheelchair to see E. I was in pain after the operation. I felt every bump and like I was under attack from dark forces - it had been a 'blood moon’ the night she was born - it’s hard not to get superstitious about that. I’d had weird visions in the night of ancient Egypt and these sort of high priest figures taking care of the baby - probably tripping away on the painkillers and liquid morphine, so the whole thing was sickening and surreal. The flutter ventilator wasn’t working so we signed a badly photocopied form agreeing to try ECMO, which we’d never heard of - 25% chance of severe brain damage was the stand out fact. I was pretty out of it and had been about to say No to treatment but as I opened my mouth, J said Yes.. crazy and scary to think about that close call now. I knew these specialists had swooped in and were trying to get her a bed - there had been no space at Great Ormond Street but she wasn’t stable enough to get to Glasgow or Stockholm where the other ECMO centres with spaces were. And Prof. Greenough, the lung specialist, had made it clear she was not going to survive any other way… (“You have a very sick baby… She is very beautiful.”).. Finally the ECMO chief had ‘created a bed’ at GOSH and ‘all systems were go’ to try to stabilise her enough so she could make the ambulance journey (the notes said she crashed several times on that journey, but I didn’t read those til maybe a year later..). There was a big push to make that happen and in the centre of this crazy human endeavour was this tiny creature who just seemed unbelievably fragile. It felt so wrong to do all this to her. J wheeled me away from NICU and I freaked out about it all - about continuing to hurt her and for what? What were we trying to prove? I think we were on some walkway, some in-between space - J found the registrar, a young British Asian woman. She had that bright, clever ‘A-grade’ cheeriness of people who explain difficult concepts to ordinary people who will never fully grasp the complexities, of getting tricky stuff organised, staying rational under pressure, keeping patients spirits up in difficult moments, getting them to make life-changing decisions they are totally ill-equipped to make. Her face changed when we said we needed to talk. She slowed down and listened to us, to our doubts, to us (to me?) wanting to put on the breaks and stop all this noise and circus - to stop what I saw as this wilful ego-drive to keep E alive at all costs. These aggressive, invasive procedures on such a tiny fragile thing seemed so profoundly wrong. Anyway the registrar went and got her senior, the ECMO chief who’d been working unbelievably hard across countries to set up care for E… Poor guy. You could see his face drop when we spoke of our doubts and how it all seemed too much and like it was torturing the baby and how we wanted to put a halt to the process. I think I felt his anger. But anyway he listened to us. I can’t remember what I said exactly but I remember a shift in him. His organising, rational, decision making energy just dropped. And he said something like, “Look I’m not into being a hero“. "I don’t believe in heroes”.. or something like that.. “If I didn’t think she had a chance, I wouldn’t do all this.” “You really think she has a chance?” “I think she has a chance”. Everything changed then. We said OK and proceeded with the treatment - or as the ECMO nurse rightly called it, this “major assault”. The decision was not made when we were given all the facts and signed the disclaimer paper. And we couldn’t make a decision ourselves because we were completely clueless. The decision was made on that walkway together in between two buildings during that impromptu meeting where both parties spoke on a level to each other. Lots happened after including a 5am decision whether to take part in a trial to cool E’s brain on ECMO - we said no - it sounded too Frankenstein-ish -though I often wonder if we should’ve said yes.. anyway lots more touch and go moments, and even some amusing moments where a particularly warm nurse from Nigeria would wait til the Sister left the room then pray over E’s cot or give me advice on keeping J happy, “Try wearing a little light lipstick?”. It didn’t matter to me we didn’t share religious belief - I appreciated her getting creative with the job and giving E the extra boost! Months later when E was released from hospital, I was shopping with her in the pushchair in Morrisons. I noticed this guy following us around the aisles. He kept looking at us in a funny way… I thought he was maybe creepy in some way, but then he knelt at the foot of the pushchair and started crying and I realised who it was.. the anaesthetist from the night of her birth. The last thing I heard was him shouting: “Just give me a minute, the epidural takes a minute.” The surgeon shouting back “We need to GA her now. NOW”… then mask on. Blackout. He touched E’s foot as she stared back at him from her pushchair - he held her hand. “She is OK. She is OK.” Then to me, “I was so worried. I just needed a bit more time. But she is OK?”
Read by Georgina Sowerby