A couple of nights ago, I watched Sally Phillips’ documentary – A World Without Downs (http://bbc.in/2cTj02D). It has been ticking over in my mind ever since. On social media it has triggered really interesting and highly emotive debates.
Francis Ryan wrote this article in response to the documentary http://bit.ly/2dBJdQJ, calling on us all to move away from black and white arguments and giving space for the grey. Ryan asks women to stop attacking one and other, “Both women and disabled people deserve better than simplistic judgments”.
I have had two children. They are both under three and I was offered the screening test. I wasn’t really sure what it would tell me. While I am 100% pro choice, I felt that I would really struggle terminating a pregnancy. However, on reflection I can see that as Ryan points out, that this is black and white reasoning. If I got told that my child would always be in physical pain. It might stop me and make me think. If I got told that my child would be violent. I’m not sure. If I got told my child had a some learning difficulties, then I would not choose to terminate the pregnancy.
The big thing, I gleam from this, is that it is incredibly complex to argue about termination and I am not armed with enough information. So all I have is my opinion. And what’s that worth – well nothing or everything or something, depending on your relationship with me.
There are plenty of keyboard warriors out there who will tell you what is ‘right’ and ‘wrong’. Becoming a mother myself, made me see how brutal the online community can be about parenting.
When I was 36 weeks pregnant, with my second daughter, I got diagnosed with Intrahepatic cholestasis of pregnancy (ICP). ICP stops biles flowing through your liver, as a result these biles build up in your body. The way it manifests is that you get itching on your hands and feet. It turns our that this isn’t entirely true. I had a very itchy stomach and back. I just assumed it was my skin being stretched that was making me uncomfortable. I had already been told that this baby was expected to be a big one (she was average) and that I had too much amniotic fluid (I didn’t in the end). So there I am itching away thinking ‘Oh my big baby, in my olympic size swimming pool of a uterus, is just stretching my skin to the point of near transparency’. I very casually said I had been feeling itchy to my midwife. I nearly didn’t say this. The midwife said it would probably come to nothing, but she ought to run a blood test. Something to do with my liver. It sounded mad. But what did I know! I am not a medical professional. I just was in awe that my liver could be so disgruntled by a baby. I put it down to the many mysteries of pregnancy.
The following morning, I was called by a midwife from the day care unit at the hospital where I was booked in. She said that the blood results weren’t quite right and that I should come in. I asked her when I should come and she told me as soon as possible. Luckily my parents were with us, looking after our eldest, so off we tripped husband and I, trying to stay calm. We knew nothing. We focused on the fact that we would be told if something was wrong and we would be told soon.
Hospitals are strange places. I come from a creative background. The places I work in tend be clear, open spaces. The people I work with are sensitive and responsive to each other. Its quite a tactile environment with a huge amount of peer support. So, to me, Hospitals are strange places. My contact with Hospitals was mainly to see dying relatives. I’m sure I’m not alone in this at all. Hospitals are scary and you hope that you never have to go to them. For yourself or for anyone else. You want to be in good health. When you are pregnant, there is a big rise in how much contact you have with the NHS. With my first pregnancy, all was fine – as expected. I didn’t think of myself as being ill when I went in to hospital.
I’m sure if Hospitals were my working environment, if I saw beds and machinery and uniforms and fluorescent lighting every day, then I would completely normalise it. However, it was normal. I wasn’t normal. Something wasn’t right. I sat in the waiting room, a big ball of nerves. Their was a couple across from us. The woman was silently crying and her partner was trying to comfort her. It was really tense. Another pregnant woman came in and she was on the phone. ‘Yeah, I’ve been here all night. I ran out of battery. They don’t really know what was wrong.’
The room felt close and suffocating despite the big windows behind us. A midwife came in and called my name. She walked us through to a room with two beds in it. Beds probably generous. I would say they were fairly hard rubbery planks. Perfect for a pregnant woman. Any way, as she walked us in she said “So you have obstetric cholestatis, we will hook you up for some monitoring and see how the baby is doing, I’ll be in the office watching the monitor. Let me get you a pillow to make it more comfortable.” She walked out of the room.
My husband and I looked at each other completely baffled. What was this obstetric cholestatis? We could barely say it. Give us a line of Shakespeare and we can crack that code but Obstetric what? When the midwife came back with a pillow, apologising for its thinness, we asked her what it was?
‘Oh Obstetric Cholestatis?’ She said. ‘Its when your liver isn’t quite working properly so you bile levels build up.’
‘Oh.’ I said.
She sat down on the bed by my feet. ‘I’m so sorry. I thought you had been told already that you had it. We are not entirely sure why women get Cholestatis. We think it may be something that occurs when there is a rise in Oestrogen and Progesterone levels in the body. It can be genetic. It disappears again once the baby is born.’
‘Oh.’ I said. It sounded medieval. Even older then that. Like something we would have studied in the history of medicine at school. It seemed mysterious, like another pregnancy thing that no one quite knows why – but Hey! Every pregnancy is different.’So why is the baby being monitored?’ I asked.
‘Well. We just want to make sure that the baby is doing O.K. Are you getting lots of movements?’
‘Then I am sure they are fine.’
‘Why wouldn’t they be fine?’ my husband asked.
‘There is a small risk of sudden stillbirth with this condition. Its a very small risk.’ She went on. I’m sure she said more things, but I had stopped listening. Did she just say stillbirth? This baby could die, suddenly because I was itchy and my liver wasn’t doing its job? There would be no warning. There would be no build up. The baby would just stop. Cease. Be no more. What? You want to monitor the baby to see if its still alive? Down in her underwater world, my daughter gave me a hefty kick in the ribs. Reminding me that she was still there. Still breathing and active.
The midwife wrapped the two bands, pink and blue around my expansive bump and hooked me up to the monitors. We heard her little heart thumping and thumping. She’s alive, she’s fine, she’s safe. But was she? My body was not responding well to her being there and it could kill her. Suddenly. How could my body let me down in this way? How could my body let her down in this way. I spent 36 weeks building her piece by piece, watching my body swell, felt that grind in my pelvis and my hips opened up, adjusting the way I walked as she grew, stopped eating the things I loved, I’d seen her heart beating on scans and I had had many due to worrying speedy growth. I’d made my piece with that. She was a strong, bigger baby who wriggled and wriggled around. I’d explained to my toddler that she would soon have a younger brother or sister. My toddler had felt her kick and move around in my stomach and now? Now all that could change. Just because I was itching?
Was I informed that itching could be a serious problem in pregnancy? No. Was I informed what the blood test was for? No, not exactly. Was I told what was wrong with me, clearly and concisely, without me asking? No. Was I told about the risk to my unborn baby’s health without me asking? No. So how could I make good informed decisions if I wasn’t informed. I had to fall back on my own initiative and understanding to get these answers. There is a lot of enigma surrounding maternal health and its unacceptable that women are not armed with the information about their own bodies. During pregnancy, we can access apps that tell us the size our babies are. But what about the science behind it all? What physiology is being shifted in our bodies? Why are we so uneducated in a process that women have done since time immemorial?
Phillips’ documentary might not have all the answers, or in fact any of them, but there is a lot of knowledge that could be shared with women, that is not. She has been criticised for being too emotionally led and too one sided to give the topic of screening for down syndrome a proper hearing. However, most people experience life emotionally. Historically, thats how we all learned about the important things in life, through the act of one person sharing a story with others. Admittedly, we have made huge advancements in Scientific research since the days that we would share information through the means of storytelling. However, we do not need to dismiss one method in lieu of the other. These things should be compatible.
These issues are very hard to discuss openly and non judgementally because we are not armed with the knowledge or the language to talk about maternal health or disability enough. We will never acquire this language if we never approach these subjects. We will never recognise that these issues need approaching, if we never give them the platform to be discussed. That is what Phillips has started. A discussion. And for that, I am grateful. Let’s hope it leads us to a shift in how we can talk about our experiences in a way to empower both ourselves and others.
Felicity Goodman is a Voice Teacher, Playologist and Story teller based in South Manchester. To learn more about her work, please visit http://www.felicitygoodman.co.uk or say hello on Twitter, @flickgoodman.