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Reflections

A Healthy Serving of Reality

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A Healthy Serving of Reality
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I never thought I would be on the receiving end of gratitude until cancer happened. This show of kindness has kept me on the other side of Kenya’s health care system. I consider myself lucky. I am able to afford chemotherapy drugs, monthly tests and doctor’s visits and supplements.

It is common knowledge that cancer is not cheap and this is universal. At the height of my treatment, I was spending 140,000 shillings a month on treatment, the cost of my bone marrow transplant has more zeros and commas. It is thanks to family, friends, colleagues and strangers that I was and still am able to afford my treatment. Acknowledging this fills me with a sense of humility. I struggled with the kindness that was showered my way. My therapist who helped me grapple with the many twists and turns of this journey told me to be ‘open to kindness’. Pride stood in my way, but the bitter truth was that I could not have done this alone. We as a family, could not afford this alone.

Our healthcare system is us! It will be us, the people, holding one another until we have a public healthcare system that will be able to provide universal, affordable and quality healthcare services. My diagnosis gave me new eyes to accompany this new normal. I was hugely aware of the shortcomings of our public healthcare system and once you experience it, it scares you. And if you have private medical insurance, you will appreciate the cover. But these health covers are not bottomless pits. If anything, they cushion and if it’s excellent, it offers restful nights. During the two weeks of my hospitalisation, I spent over six hundred thousand shillings of my one-million-shilling in-patient cover. Thankfully, NHIF, knocked off another 100k. My outpatient cover was going to be blown in sixty seconds and I was tapping into my savings.

Alice Membao Tawa, was my nyanya, my grandmother. Sometime in 1999, she was admitted to the burns unit of the Kenyatta National Hospital (KNH). She spent many weeks there until she passed away. The burns unit is not pretty, but we made our visits to the hospital hoping nyanya would get better. That period introduced me to the harshness of our public health system.

It is functional, though not wholly efficient. Kindness doesn’t come easily for some members of staff. There is a tough-love, ji-sort, hii-ni-kazi and uta-do attitude that is harboured by some of the staff.   I witnessed patients lying on mattresses on the floor, and there were patients sharing single beds. Beds were currency. There were no three-course meals like the Nairobi Hospitals, Maters or Aga Khans, the food was bland, stodgy and uninviting. It provided the most basic of nutrition. The hospital and the wards had a beaten and drab feel to them. They didn’t offer comfort or healing. I’ve been to Kenyatta many times after that, for several reasons, and there have been vast improvements, but it is far from perfect.

We work hard to able to afford private healthcare, but sadly not everyone in Kenya can access this. I don’t take this for granted. I was saddened by the many stories of patients being turned away or dying due to the lack of medical personnel during the doctor and nurses strike. I heard medics being described as selfish for downing their tools. I bet these critics made sure their health premiums were up to date nor had they slept or walked into a public health facility.

Let us not deceive ourselves, as we live in Kenya, we are not too far from experiencing the ‘other side’ of our health care. I keep on imagining what if I was to have an accident in public either in Nairobi or elsewhere? I would probably be rushed to public health hospital before my insurance provider is notified. I have thought about it constantly. What if the only place that I would have been able to afford or receive treatment for my cancer would have been from a public health facility? If I had to receive chemotherapy intravenously and not orally, I’d be making an early morning pilgrimage to KNH and camping on the hospital grounds as I wait my turn. It would be a process of waiting hours to see a doctor for minutes and hoping that on that day they would show up.

Over the last 24 months, I have met other cancer patients who have lived that experience of waiting, wondering and hoping. There was six-year-old Waithera who was scheduled for surgery on the day the doctors’ strike began. She was only able to get badly needed surgery when her father was informed about the Faraja Cancer Trust, but before this, the hospital in Nakuru had become a second home.

I learnt that it was faster and cheaper if you got admitted as an overnight patient at Kenyatta for chemotherapy treatment. I hope the new equipment at Kenyatta will reduce patient waiting times. I was told that it was faster for patients in the western part of the country to go to Uganda for radiotherapy treatment rather than coming to Nairobi. Yes, Uganda, whose only radiotherapy machine hit the global headlines when it broke down last year. Yet, there is a radiotherapy machine in Kisumu lying idle because there aren’t enough numbers to justify the cost of operating it. Apparently, there aren’t any oncologists in Kisumu. One must go to either Eldoret or Nairobi for treatment.

In rural medical centres, there are numerous stories of misdiagnosis because of some patients (some now deceased) were tested and treated for malaria or typhoid before the discovery of cancer or either a preventable or treatable malady.   I still get angry thinking about this. Early diagnosis of breast, cervical and prostate cancer make these three cancers treatable and affordable. Being diagnosed with cancer doesn’t necessarily mean death.

Our healthcare system is us. ‘Naomba serikali’ does not cut the mustard anymore. The mode of referrals for specialists, surgeons, pharmacies, and hospitals both in Kenya and abroad is word of mouth. I created a spreadsheet of the different outlets that I could source my medicine from and the phrase, ‘naenda kutafuta dawa‘ became real. There was one time I went to three hospitals looking for a drug because it was in short supply. That was when I realised that there are many of us on this journey. A journey to find the best possible healthcare that our money can afford to buy.

I followed the doctors and nurse strike keenly, read the Collective Bargaining Agreement (CBA) and cried tears of joy when an agreement was reached. We need to put more into our public health system. I am sure we know of cases of patients being transferred to KNH from private hospitals because it was cheaper cost wise. Remember those bottomless pits? They don’t exist. We have a cadre of men and women who are passionate about their work in public health. We can only reward their duty by making sure that they work under the best possible conditions. I have seen it work in the UK, through the National Hospital Service. It is not perfect, it has its critics, but it works. I look forward to the day when we will have a system that we too can boast of. One can dream, right?

But until then, our healthcare system will continue to be us. Where we look out for one another, attend medical harambees or give towards Mchanga campaigns, share a referral or WhatsApp messages on cancer, diabetes and blood pressure cures! We cannot afford to have a health system that ‘others’ individuals or provides care that is dependent on the size of one’s purse.

For we all know that death and disease do not discriminate.

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Kevin Mwachiro is a writer, poet, freelance journalist, broadcaster and activist. Kevin was diagnosed with a blood cancer called multiple myeloma in October 2015 and is currently on maintenance treatment (low dose chemotherapy) to manage his condition. Kevin has documented his journey on https://medium.com/@kevinmwachiro

Reflections

Just Do It!

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Just Do It!
Photo: Joanna Nix on Unsplash

This ‘Brazen: Reflections’ series was born out of a desire to continue the conversations springing out of the ‘Too Early For Birds: Brazen’ theatre performance in Nairobi in July 2018. TEFB-Brazen was a mix of straight-up scripted theatre, narration, poetry, music and dance that featured the little-known stories of six fearless women in Kenya’s history – freedom fighters like Field Marshall Muthoni wa Kirima, Mekatilili wa Menza and Wangu wa Makeri; democracy activists Philomena Chelagat Mutai and Zarina Patel and even one iconoclastic yet nameless woman warrior who brought down Lwanda Magere, the legendary ‘Man of Stone’ in Kenyan folklore. The story of each hero was narrated by a corresponding mirror character on stage. The ‘Brazen: Reflections’ series seeks to explore the idea of brazenness, what it means in our daily lives, whom the idea of brazenness privileges or erases, and the place that brazenness has in imagining freedom. 

 

* As told to Christine Mungai

 

A few months before Too Early For Birds: Brazen was due to be performed, the writers of the show – Aleya Kassam, Laura Ekumbo and Anne Moraa – invited a number of women for a pre-show reading of the script, to see how it landed and what could be improved. I attended the reading, and brought my mother along.

The reading got underway, evoking frank conversations about the struggles that women face – at home, at work, everywhere really, as we fight to stay alive and sane in a society that constantly works to degrade and diminish us. My mother listened, patiently as she always does, and then said something that surprised the group – that she was struck by the fact that women in 2018 were facing the very same struggles that she was battling forty years ago.

My mother, Lucy Wanjiru, is now is her 70s. She told the group how she raised my four siblings and I as a divorced woman in the 1970s. Which, as she pointed out was not the kind of thing done at the time. But she was different. She’s the kind of mother that had the “sex talk” with us openly, and answered all our questions as best she could. She was the first to take me out, to teach me what alcohol did to my body, and how to handle it. She bought me my first miniskirt.

Someone asked my mum whether she knew any gay people “those days”. She said yes, we knew men who did “women things”. And that there were girls who “disappeared into some corners with other girls”.

Was there a backlash? Were they ostracized? Was there the same stigma as today?

“Not really,” she said. “It was understood that those girls were not ‘for marriage’.”

And then my friend Nini asked my mother, “Did it occur to you that you could be in a relationship with a woman?” She answered: “Unfortunately I’ve never been attracted to women, but if I was, it would have been a great arrangement.” That blew everyone’s mind, and they all burst out laughing. But my mother meant it.

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I’ve been thinking about that conversation in the weeks after TEF Brazen, about the things that time changes, and what it doesn’t change. My mother sharing her experiences from forty years ago mattered to the people present that day – it reassured them that they were not alone, that others have passed this way before. But it was also a reminder that the forces against us as women are resilient, frequently shape-shifting into more modern versions of the same old oppressions.

I ended up watching Brazen with my mother, as well as Martha Karua, who’s had a distinguished career in public service, Justice Martha Koome, judge at the court of appeal and Marilyn Kamuru, advocate fighting for the implementation of the two-thirds gender rule. It was a veritable cross-section of women representing different generations of Kenyan brazenness.

It made me realize that we need those cross-generational spaces that allow us to access those memories, that let us know that this too shall pass. And for those who have gone before us, it matters that someone is listening. That someone will read the Hansard and retrieve what you said, like they did for Chelagat Mutai in the performance. That someone will quote you, will re-tell your story to little ones one day.

At what point does a girl become a woman in her mother’s eyes? I was lucky that my mother spoke frankly to us, gave us an anchor to hold on to, and helped us find a way to make sense of the world. For too many women however, it is happens too late, too abruptly, or too tainted by the contradictions of life.

I asked my mother that day, “At age 35, you were running a business, running a home, and raising five children by yourself. With all of society’s forces against you, how did you do it?”

She said: “You just close your eyes and get your work done.”

That’s Brazen.

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Reflections

Gonna know we were here

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Gonna know we were here
Photo: Eloise Ambursley on Unsplash

This ‘Brazen: Reflections’ series was born out of a desire to continue the conversations springing out of the ‘Too Early For Birds: Brazen’ theatre performance in Nairobi in July 2018. TEFB-Brazen was a mix of straight-up scripted theatre, narration, poetry, music and dance that featured the little-known stories of six fearless women in Kenya’s history – freedom fighters like Field Marshall Muthoni wa Kirima, Mekatilili wa Menza and Wangu wa Makeri; democracy activists Philomena Chelagat Mutai and Zarina Patel and even one iconoclastic yet nameless woman warrior who brought down Lwanda Magere, the legendary ‘Man of Stone’ in Kenyan folklore. The story of each hero was narrated by a corresponding mirror character on stage. The ‘Brazen: Reflections’ series seeks to explore the idea of brazenness, what it means in our daily lives, whom the idea of brazenness privileges or erases, and the place that brazenness has in imagining freedom

 

I recently found myself in a room with the mother of my auntie’s husband who we all call Cucu. Having lost my biological grandparents, this sweet lady—who, at 98, has always been old to me—was fascinating to observe. Cucu sat in a corner, singing gospel songs with her feet elevated. She was snug and warm and aged in that good way; seen the world and sure of her bedtime.

I thought about the Kenya she met in 1920. A colony filled with fear, hunger and violence. Though I can almost hear Ciru’s character in TEFBrazen chime in, “kinda like now”, I wonder what uncertainties coiled in the belly of Cucu’s mother as she looked down at her daughter. As a woman, I feel certain the same dread extends across each generation facing a hostile world that needs unmaking: Will they survive? Will they thrive?

Not enough to make it.

This is where we need the radicals and their rage.

They find the words, the exact colour and stroke, the perfect verse and tempo, the opening, the safety, the fearlessness, the cunning, the voice needed to challenge the world. March 16th, 1922 was Mary Muthoni Nyanjiru’s time to be Brazen. She rallied a crowd of 7,000 agitating for the release of Harry Thuku, a political activist fighting against the colonial government.

They say that right there, outside Central Police station, Nyanjiru stripped naked, faced down the bayonets and yelled, “Take my dress and give me trousers! You men are cowards! What are you waiting for? Our leader is in there. Let’s go get him!”

For author Grace Ogot, being Brazen was deciding to publish work in both Luo and English when she realized there was a dearth in work by East African women writers at the 1962 African Writers Conference. Her fellow attendee, Rebeka Njau went on to write a one-act drama that unequivocally condemned female genital mutilation. The Scar was published in 1965 and is the first ever play written by a Kenyan woman.

A decade later Rebeka would rewrite her award-winning debut novel Alone with the Fig Tree into Ripples in the Pool with a queer protagonist, Selina, a married woman who falls for her husband’s sister. In a moment of reflection Selina reveals her motivation: “I have discovered that a woman must fight her way in this cruel man’s world. This is what I’m doing now.”

And women needn’t be pioneers to shake things up. Daring to be different and refusing to be cowed or shamed is just as empowering. It is evident in how musician Akothee, the self-proclaimed ‘president of single mothers’, has made her Instagram account an island of ungovernability. That honesty with which socialites such as Bridget Achieng – featured on a recent BBC Africa Eye documentary – speak candidly about their lives and the cost of choices they make.

Brazenness is in the very bones of the Bar Hostess Empowerment & Support Programme. This organization is a haven for Kenyan sex workers. It also incorporates women who have sex with women (WSW), women using drugs and, bar hostesses. What’s fantastic is that they offer training to sex workers as paralegals which helps them in defending themselves on the streets, in the back of the council vans, and in the courts.

When women refuse to be made invisible, they are able to question status quo. It is a struggle but there is glory in being alive this way. When transwoman Audrey Mbugua challenged the Kenya National Examinations Council to change the name on her certificate, she demanded to be seen for who she was. She won.

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When filmmaker Wanuri Kahiu took the Kenya Film Classification Board to court for banning her film Rafiki, she wanted to give Kenyans a chance to see two young people—who happened to be female—fall in love. She won and made over three million shillings to boot.

But it isn’t about winning. It’s about having the audacity to point out an injustice and not back down. In 2016, lawyers Marilyn Kamuru and Daisy Jerop together with the Center for Rights Education and Awareness led a petition against the Chief Justice and the National Assembly to dissolve Parliament. The Constitution is clear. Everyone ought to be sent home for non-compliance with the two-thirds gender rule. The petitioners openly declared “there is no democracy without women’s meaningful representation in the national legislature.”

How powerful is that?

Yet and still, not enough make it.

Nyanjiru was the first to be felled by bullets that day.

*Liz was gang-raped on her way home from her grandfather’s funeral.

Jackline Mwende’s husband chopped off her arms.

This is still the world we live in. Where our bodies are viewed as disposable, our fate inevitable and our triumphs erasable. That is why I enjoyed Too Early for Birds – The Brazen Edition so much. It hit all the right notes: truth, homage and genius. We need this kind of inspiration. We need our joys and pains documented. We need to grieve. We need to imagine new ways to be free. This is how we survive. This is how we thrive.

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Reflections

EMPTY ARMS: The story of Kenya’s broken maternal health system

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EMPTY ARMS: The story of Kenya’s broken maternal health system

This ‘Brazen: Reflections’ series was born out of a desire to continue the conversations springing out of the ‘Too Early For Birds: Brazen’ theatre performance in Nairobi in July 2018. TEFB-Brazen was a mix of straight-up scripted theatre, narration, poetry, music and dance that featured the little-known stories of six fearless women in Kenya’s history – freedom fighters like Field Marshall Muthoni wa Kirima, Mekatilili wa Menza and Wangu wa Makeri; democracy activists Philomena Chelagat Mutai and Zarina Patel and even one iconoclastic yet nameless woman warrior who brought down Lwanda Magere, the legendary ‘Man of Stone’ in Kenyan folklore. The story of each hero was narrated by a corresponding mirror character on stage. The ‘Brazen: Reflections’ series seeks to explore the idea of brazenness, what it means in our daily lives, whom the idea of brazenness privileges or erases, and the place that brazenness has in imagining freedom. 

 

The pain

The morning of 3rd November 2013 is still so clear to me, almost five years later. I remember waking up at 2:11 a.m. in so much pain I could barely stand. I remember waking my husband who was sleeping next to me. I remember how calm his voice when he said, “dress up, let’s go to the hospital”. I remember what I wore – a green dress with black floral patterns. I remember touching my belly and wondering why it felt so hard. I remember my husband driving like a crazy person, ignoring every red light on the way to Nairobi Hospital. I remember how the emergency area of the hospital looked dreary and depressing. I remember the relief I felt when I heard my daughter’s heartbeat but then a twinge of anxiety when the sonographer said her heart rate was higher than it should. I remember the next nine hours clearly, up until noon, when my water broke and I pushed my baby girl into the world. I remember seeing her tiny body on a tray and hearing the doctor say “I am so sorry she didn’t make it”. Then everything from there is a blur.

The people that came to visit us in hospital were very kind, but for the life of me I cannot remember any of the conversations we had. A few pastor friends stopped by and prayed. I had trouble closing my eyes though. I was sure if I closed them, the darkness in my heart would overwhelm me. The only thing I remember about the days that followed is my first shower. I stepped out of my bed, legs shaking and eventually made it to the shower. And I touched my belly and there was nothing where my baby bump had been. And I sobbed in the shower, wishing I could die. But I didn’t. And at first, I was deeply disappointed with God for letting me live. But I went home and experienced so much love from friends and family. I remember Timo and Lo (a couple who lived near us) coming to our house with food. That was the first night I laughed since my daughter died. And my journey of healing began.

Seeing in colour

A month after coming from hospital I wrote about losing our daughter on my blog. I had resigned from my job. So here I was, unemployed, with no baby to look after. The blogpost was my way of trying to understand what had happened to me. Then, I felt, if I just wrote it down, it would stop having so much power over me. And the writing helped. I felt lighter – the kind you feel after a good cry. But soon after I received numerous calls, emails and messages from people who had lost a baby or knew someone who had. I don’t know why I did it but I reached out to these people. Here I was, still raw from pain, listening to other devastating stories of loss. For some reason, holding hands with these parents, crying together and encouraging each other started me on my healing journey. Somewhere along the way my heart was strengthened. At some point I started to see in colour again. And though some nights were long and teary, there was a new hope in my life.

I started Still A Mum officially in October of 2015. It is a not for profit that provides psychosocial support to parents who have gone through miscarriages, stillbirth and infant loss. In the three years I have been doing this I have met over 850 men and women beaten down by the death of their baby. Broken by the lack of support from their family. Angry because of the myths their neighbours have about why the baby died. I have met couples that have lost an eight-week pregnancy and people dismissed their loss and called their baby a “mass of cells” not knowing that they had been trying to get pregnant for six years. I have met university students who were terrified when they found out they were pregnant, and even considered abortion, but decided to keep the baby. Then sadly lost the baby. And this baby, not wanted at the beginning, but loved over time brought them such sadness when they were no more. Every year we plant trees to mark Pregnancy and Infant Loss Day in October and my heart is so full to hear a man tell me, “Thank you for giving us a chance to plant this tree in memory of our baby. This is the first we are speaking about our son since he died.”

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Sure, my life took a detour I am so grateful for – from a career in tech to running Still A Mum. Half the time I feel like I have been thrown to the deep end because I am not a counsellor, yet I am here to offer comfort to grieving parents. Of course, I often feel boggled down by the high numbers of pregnancy and infant loss. We are barely scratching the surface and it breaks my heart to know there’s a woman who has lost a baby and has no one to walk with her. Yes, I have missed the glamour of employment life, and the security of a paycheck. But that passes when I meet a mother I have counselled and she’s laughing again. When I run into a mum who tells me that they have recovered from a loss and are even thinking of having a baby again, I get overwhelmed with joy. That’s being Brazen.

***********

The broken health care system

That being said, every day I come face to face with Kenya’s broken health system. Perennially, I see how much more work needs to be done. Did you know that Kenya has 23 stillbirths for every 1000 live births (the rate is 10 for Mauritius and Seychelles, the safest places to have a baby in Africa, and just ten in the US and UK)? Did you know that in Kenya we define stillbirth as the loss of a pregnancy from 28 weeks while developed countries it is from 20 weeks? That means that in those countries a baby born at 21 weeks can make it?

Do you know how many hospitals in Kenya can handle a birth emergency? How many health centers have incubators? Or even a theatre for a basic caesarian section birth? Did you read about the mother who lost quintuplets in Kenya last year? I went to visit her in Oyugis and saw how devastated she was to bury five babies. Five babies! And why? Because she could not go for antenatal clinics because the nurses were on strike, and so assumed she was pregnant with only one baby. On the day when labour started she thought she could handle the birth at home, with a midwife. Until she delivered two babies and the midwife saw there were more. And she was rushed to a hospital in Oyugis where she delivered the other three. Who had to be moved to a hospital in Kisii because the first hospital did not have incubators for the preemies. Eventually because of the movement and the cold the three babies died. And just like that a woman lost five children! That is our health care system.

But that is not what riles me most. I am most angry about how Kenyan hospital staff treats mothers and fathers after the loss of their baby. During the support group sessions I have heard some of the most devastating stories I’ve heard in my life.

I went into labor when I was 23 weeks pregnant. The nurse that came to my bed said “mama, huyu mtoto akizaliwa atakufa tu”. She said that because the baby was too young their chances of survival are almost nil. All I could hear was that “atakufa tu” statement. It was so callous. I didn’t know I would be experiencing a lot worse. As soon as I pushed the baby out, the midwife lifted my son and threw him in the trash can as I watched. Soon after, I started to throw up because my blood pressure was really high. Without missing a beat, the midwife handed me the trash can she’d put my baby in so I “stop messing her floor”. Can you imagine how I felt throwing up on my baby?! I had nightmares for months. – Joan*

I lost my baby at 36 weeks of pregnancy. My daughter died in my womb about 24 hours before I came into hospital. “Mama, hapa hakuna heartbeat” The sonographer said while staring at the monitor. Then I was sent to the maternity ward and nobody explained anything. I just saw nurses setting up the drip and putting it in my hand. A few hours later I went into labor. After delivery when I asked if I could see my girl I was asked why I would want to see a dead child. Then I spent the night in the maternity ward – I could not sleep hearing all the babies crying yet mine was dead. It was the most traumatizing thing I’ve ever gone through. I demanded to be discharged the very next day. – Ruth*

I stayed in Newborn ICU (NICU) with my son for 6 weeks. Every day was fighting a new battle. Some days were good, some were tough. One day he’d be doing well the next he’d be fighting a new infection. Because of the bill that had already accumulated my husband and I had decided I would be commuting instead of sleeping in the ward. Most days I just slept in the car. Six weeks in I was exhausted both physically and mentally. I had cried until I didn’t think I had more tears. I had prayed, desperately asking God to take my life instead and spare my son. I didn’t know if I could take more bad news. Then on Thursday May 4th 2017 I walked into NICU and saw a group of doctors and nurses surrounding my baby trying to resuscitate him. Not more than five minutes after I walked in, the machine stopped beeping. Immediately they set my son aside and put another baby into the incubator. They didn’t even wrap him up. They just left him there naked and cold. – Cynthia*

I hear these stories so often and each time it breaks my heart. I meet women who doctors have ignored their calls for help, or the midwife disregarded information they gave that would have saved their baby’s life. I listen as fathers narrate how they paced the corridors outside the theatre only to be told their babies died. And how painful it was for them to break the news to their wives. Our bereavement care is almost non-existent. Our health care is totally devoid of compassion. Medical practitioners leave medical school knowing how to diagnose a patient’s illness and prescribe medicine. They know how to conduct difficult surgical operations. But they are caught flatfooted when they have to break bad news to a patient. They are devoid of empathy. And I understand that most are overworked and already doing more than is required, but a little compassion is required. Saying “I am so sorry for your loss” goes a long way.

I know we can do better. The situation definitely feels bleak but we can start to fix it. Every day we can change systems that don’t work and introduce some new ones that do. Every day we can get feedback from patients and see ways to improve. We don’t have to have world-class facilities to start seeing change – we can be more compassionate and humane and not belittle the loss of a baby. We can start where we are and visit a bereaved parent. And hug them. That’s Brazen.

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