A view from India: Human Rights in Childbirth

Today is Human Rights Day 2016. Every year on the 10 December we commemorate the day on which, in 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights. So on this day, when we think about how we can stand up for human rights both here in the UK, and all over the world, we are sharing a guest blog post from Lina Duncan, a midwife (@MumbaiMidwife), who has written about her experience of childbirth in India…

Trigger warning – this piece discusses a stillbirth

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I have lived and worked in urban India for nine years and during that time I have found that midwives are missing from the system. I have witnessed how hospital policies, mixed with religious or family tradition, harm women and their babies.

I have heard and read hundreds of stories about women in India who have been pressured into potentially unnecessary interventions with inaccurate, fear-mongering information. This breaks women. It damages them before they even begin to birth and care for their babies. Most women do not speak of these things because they are told that a healthy mother and baby is all that matters.

I have seen and heard of many tragic situations of pregnancy loss or stillbirth where the mother was not told the truth. In each case, the mother was told her baby was in the NICU. She was lied to and denied the right to meet her baby, to make memories, to grieve, to hold her baby. Mothers are too often then silenced in their grief.

I do not believe that a healthy mother and a healthy baby are all that matters. I believe that the truth also matters. Facts, and language, are vital, so that women have all the information they need to make informed decisions. This is especially the case when a care provider has to give difficult, or potentially devastating news.

Truth + Kindness + Compassion = (usually) Satisfaction and Comfort

Half-truths + Lies + Fear = Broken Trust, Fear and Trauma

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I have a friend. She looks a little wild, maybe that’s why I liked her from the start. She often has a vacant look in her eyes. Frequently, she adjusts her clothes and shows me bruises from her alcoholic husband.

She doesn’t know her birthday, nor her age. She looked about 22 when I first knew her, pregnant with her first son who was born in a temporary shelter where she was living on a disused railway platform.

Fast forward a couple of years. I have not seen her for months. Her chaotic life is mostly about daily survival. She feeds her drunk husband first, of course. Then, her son, and then, her pregnant self. She has not had any antenatal check-ups. I persuade her to go with me to the government hospital, with son in tow because she is afraid to leave him with his father.

I show her what to do and entertain her lovely unruly son who is filthy. Everyone stares at me, and her, and it’s awkward and tedious. It takes about seven hours to get completely registered. She is prescribed vitamins, calcium, protein powder. I get her a few of the important ones and open them so they can’t be sold for liquor.

I don’t see her again for months and I worry.

One day she rocks up and calls my name. She is 39 weeks pregnant. She has had no antenatal care for 30 weeks. She does not want to go back to hospital but her husband thinks it’s a good idea. I go with her. The son stays at ‘home’.

The hospital wants to see a sonogram. The machine is broken. We have to pay 400 rupees (£4) for a private one. She has 10 rupees only. I pay. It takes forever.

I’m ‘not allowed’ in with her. Then the curtains are drawn back and I’m invited in. I know it’s not good news. ‘No heartbeat and only part of the brain,’ says the sonographer, to me. My heart sinks. I ask him to tell my friend as my Hindi is not good enough. He tells her and she smiles and says, ‘let’s go get lunch’. She has not understood.

We get food and find her husband, who is drunk, and her 3-year-old son, who has bloody knees and chin from playing alone in a building site. She is angry. I call my consultant doctor friend who works in a government teaching hospital. He invites us to go there immediately.

Another sonogram. Heavily pregnant woman with confirmed anencephalic baby. Drunk husband. Three-year-old doing somersaults all around the hospital wearing his father’s t-shirt and nothing else. We are a laughing stock and I am requested to stay and admit my friend for induction and then remove the husband and son.

She is disturbed that her son is alone with dad and they are not ‘allowing’ her out of hospital. The hospital requests that she fasts and start induction at 5am the following morning. I ask several times, politely, if I may accompany her but it is not allowed. Baby is breech and still alive. I have had lots of conversations with her about what to expect. It hasn’t sunk in. She either doesn’t understand or doesn’t want to.

That night, I tell her I will come and I will be outside the ward until she gives birth and they let me see her. I tell my friend that when she feels alone, she can know I am just on the other side of the wall. This breaks my heart. I am a midwife.

She has to go into the labour ward alone.

A colleague and I sit on the floor outside the labour room for 19 hours. Being a doula through a wall is very hard, especially knowing what she is about to face. No one should have to labour and birth without a companion.

Around 1am we are called into a little room to look at her little girl who has been born dead. I ask to take a picture for my friend. They assure me that she will be shown her baby but don’t let me in to be with her. I take pictures on my phone. They are lovely doctors but I am so angry.

At 4am they let me in to see her and ask me to buy her tea and food. It had been about 30 hours since she has eaten.

It is easy to find her, sitting up in bed with a big grin, announcing she is starving and asking where her food is. I ask her if she has seen her baby and she says, ‘not yet’. I ask her if she wants to see my photos and she says yes. I tell her that her baby was not born alive, that she was a girl, that her heart had stopped beating before she was born. I tell her the truth. She doesn’t ‘hear’ it. She smiles, asks me to come back in the morning and goes into a deep sleep.

In the early hours of the morning my phone rings. Sobs, deep sobs and demands. ‘Come now’, she says. ‘They have killed my baby,’ she says. My friend is distraught in a room full of mothers with their babies.

The day she is discharged I go to bring her home. She’s a darling and so feisty. She laughs and jokes until we walk arm in arm out of the ward. Then her body begins to shake. She says, ‘I came here to have a baby and I’m leaving with empty arms’. I have tears running down my face as well and passers-by gave us kind looks.

My colleagues and I make many visits over the following days and weeks. The family like to see the picture on my phone.

My friend has since had another baby. Her husband sold her when she was only 2 weeks old. This is one woman, one story and she represents many that live in a silent story of abuse and disrespect.

Many of us are longing for the Human Rights in Childbirth conference to be held in Mumbai, February 2017. We hope to hear many women’s stories, hear from researchers, and talk about how a midwifery model of care can be introduced in India. Do follow the conference, and join in the conversation. #breakthesilence

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A day in the life of a human rights centred midwife

Today started as many of my days do with me going straight into a meeting, no time to grab a drink or check my emails. The meeting was discussing how we improve services for women accessing early pregnancy and gynaecology. By redesigning our estate we can improve the journey for these women. How does that relate to their human rights? Well, ensuring women are cared for in an area that’s private and appropriately staffed with skilled nurses and medical staff means women that are suffering a miscarriage or early complications in pregnancy are appropriately cared for and supported. Midwives working in a hospital setting often don’t have any dealings with women below 20 weeks so its important that I make sure that the way in which these women are cared for compliments the midwifery care they receive and promotes the ethos of women centred care. If the care we give is based on the needs and wishes of individual women then we are will be meeting their human rights.

Walking round the maternity unit I meet one of our new consultant midwives who talks to me about a women she has been caring for. This woman is very keen to have a vaginal birth but is being discouraged by some of the medical staff who have concerns about her risks. Midwives and obstetricians have an obligation to talk to woman about any risk factors they may have. Unfortunately every doctor this woman has met has felt the need to reiterate this woman’s risks factors. As she clearly states “ I know the risks, I’ve been told them, I’ve researched them, I just want the best chance to have a good birth experience”. The skill to being a woman centred midwife or doctor is to speak to women on an equal footing. To remove the power dynamic that is so often present in the relationship between health professionals and those they care for is one of the fundamental steps in building a trusting relationship. Trust is, I feel, one of the building blocks of a human rights based relationship with those we care for.

I meet a young woman who has recently given birth to her 1st child but is still here 6 days later. The baby has been under the care of the neonatologists. This intelligent woman has become a mother and has experienced first hand how the “just in case” approach and “doctor knows best” has led her to stay in hospital all this time. She’s a health professional and the work part of her has made her question the doctors, she doesn’t feel the treatment and the investigations her baby has had were necessary, but now she’s a mum and the very rational, logical, evidence based approach she uses every day at work has becoming clouded by the emotions that come with being a mother combined with all the changes taking place in her body following birth. We talk through how she feels, she comments on how the care she received was great until the baby was born and then it all “got out of control”. She has been told she can go home today so we agree that she will write to me, detailing her experiences as a mum and as a health professional. I can then use that to help me challenge some of the policies, procedures and behaviours that exist in the organisation that don’t support a culture of respecting the human rights of mothers and baby’s.

My afternoon is spent trying to support the managers in staffing the unit safely, rewriting a job advert for midwives focussing on attracting candidates that believe in women centred care and the role the midwife plays in facilitating choice and helping women and their families to have a positive birth experience. I then respond to a complaint from a woman who feels she wasn’t listened to when she was in pain, didn’t have her wishes respected or her beliefs.

All of the above makes my day sound pretty depressing but actually its full of positive stuff. I see midwives and doctors supporting women, being kind, communicating well and appropriately. I see staff members supporting each other with guidance and tips on how to manage particular situations and I see many, many happy faces of women, their partners and their families who have recently met the latest arrival to their family.

I haven’t laid a hand on a pregnant woman’s abdomen, or caught a baby as its mother pushes it out or helped a new dad figure out how to put a nappy on his new child. That doesn’t make me any less of midwife nor does it mean I’ve not been able to act in a way that promotes the human rights of childbearing women.

What makes a “human rights centred midwife’?

Kindness, compassion, consideration, respect, honesty and a fundamental belief in a woman’s right to choice.

You know what’s interesting? You could take out “human rights centred” because these are all the qualities that make a great midwife and having spent 22 years working in maternity services the overwhelming majority of midwives I have met have all those qualities. Unfortunately sometimes the services they work in, the culture of the organisation in which they are employed doesn’t support them in demonstrating all these qualities. Fear of litigation, of not following guidelines or off being labelled a “maverick” midwife by supporting choices women make that might not be the norm make some midwives act towards women in a way that they don’t fell comfortable with. This makes some midwives move on, some leave the profession all together and some give in, become part of the culture.

My words of wisdom…..

Be brave, be strong…….be a midwife…..

Simon Mehigan is Deputy Director of Midwifery at Chelsea and Westminster Hospitals NHS Foundation Trust, and a Trustee of Birthrights. This blog post was first published as part of the Growing Families Conference blog series.

Talking about human rights in maternity care helps the wider human rights debate

“What have human rights got to do with pregnancy?”

“I wouldn’t have thought you have any rights – isn’t it about what’s best for the baby?”

“That’s not an issue in this country, surely?”

Before embarking on a project for Birthrights earlier this year, i decided to conduct my own straw poll of women – of mothers – I knew. I explained what Birthrights did and asked them what they thought. I was expecting questions, positive interest and challenges but it was these three responses that really got me thinking. Why is it so hard to connect human rights with something as ordinary and commonplace as pregnancy and childbirth?

I’ve been working for human rights and equality organisations for almost 15 years, including directing campaigns at the leading UK pressure group, Liberty, so I’ve seen and heard first-hand some of the biggest myths and misconceptions that exist around these issues. Part of the problem is that there isn’t – there has never been – enough public education from the Government about what human rights are and how they protect us. Human and rights might sound pretty self explanatory but once you get into the dry, legalistic territory of the European Convention and the Human Rights Act 1998 and you definitely don’t “have me at hello.”

When translated into straightforward language, the Human Rights Act is difficult not to love. Why wouldn’t you want a right to life, to speak freely, to practise your religion, to personal privacy and family life? What’s so bad about treating every human being equally, with fairness, dignity and respect? Why wouldn’t you want protection against discrimination, torture and inhumane treatment and arbitrary detention? But when you start to talk about ‘articles’, qualified and limited rights and about lawyers and courts you lose people’s interest. Most people are lucky enough to go through life without ever having to defend their rights in court and without having to hold the state to account, so why would they relate? And even when a hugely important human rights case, like that of the Hillsborough families, becomes front page news, it can be difficult for campaigners to communicate the link between justice and human rights. Add to this the regular attacks on human rights lawyers by some politicians and sections of the press and you have a toxic mix.

One of the biggest misconceptions is that human rights are only about lawyers and courts – that human rights make ‘fat cat’ lawyers richer and society poorer. But nothing could be further from the truth. The Human Rights Act means that you can defend your rights in UK courts and has brought justice and answers for many but it also means that public organisations, including the Government, the police and local councils, must treat everyone equally, with fairness, dignity and respect.  The Human Rights Act has helped thousands of people protect their rights without going to court.  It means that local authorities have had to review policies to make sure they treat the vulnerable respect and users of a wide range of public services have used the Act as a tool to argue for better and fairer services.

This is why what Birthrights does is such an important part of the puzzle. Their work is about defending the human rights of all childbearing women, with a particular focus on vulnerable groups such as asylum seeking and refugee women, disabled women, women in prison and women with other, complex, social needs, who are most in need. Their work raises the importance of providing respectful, personalised care for all women and the benefits of this for safer and better births. And their work highlights that respect for human rights is fundamental to all healthcare and the legal imperative to respect the autonomy and dignity of women, whether in relation to maternity care or to abortion rights.

Human rights protect us all but it is people who are most vulnerable who are in most need of protection against abuse. This inevitably leads to negative and misleading narratives about human rights and the way that the law is applied and this can be difficult to challenge in a way that is meaningful and persuasive for people who are otherwise, unconvinced. Campaigners must engage people in thinking about and looking at rights in a different way, through the lens of situations which are relatable. If this helps begin a conversation, we have more hope of increasing understanding and respect. If safety, equality, autonomy and dignity matters to one woman during pregnancy and birth, then why wouldn’t it matter to all women? If we can’t start life with these principles in mind, then where do we go from here?

Sabina Frediani is a campaigner and freelance writer. She spent over a decade working for the human rights and civil liberties pressure group, Liberty, where she directed award winning public and political campaigns, and has recently been helping Birthrights with our organisational strategy.