Friday, February 22, 2019

when the data doesn't know your name

It’s overcast today, which seems quite representative of how everyone around here is feeling. Yesterday, a little boy died who shouldn’t have.

He was extremely ill and needed more intensive care, and the staff at the clinic knew it. They told his mom that the child should go to the hospital right away. They handed her a referral note and when mom asked how soon the ambulance would arrive they simply said: the ambulance only comes for maternity cases.

It’s a phrase I hear regularly these days as this is the new policy. One of the most reckless public health initiatives I’ve encountered in my 12 years, I don’t know who specifically wrote the new ambulance rule, but it’s maddening. Patients (who are not pregnant) needing the hospital (25km away) are expected to stand on the side of the road and pray someone picks them up, which is doable if you are sniffling or in need of a mere consultation, but absolutely insane if you are unconscious or actively dying. Family members trying to save their loved ones often rush to our home where they speak the words, “maternity only,” leaving us to decide whether to pick up the government’s shirked responsibility – or not.

Not that it changes anything, but at least we know where the policy came from - just follow the money. The vast majority of funding in the health sector right now is targeted at MCH – maternal & child health. Zambia’s statistics are more than embarrassing when it comes to birth outcomes for both mothers and newborns and the influx of money is specifically meant to change that. So long as numbers stay happy and programs are deemed successful, the money keeps flowing which creates huge incentive for health departments to push systems that please the funding source – at whatever cost.

In Zambia, MCH is the priority of today which means that if you are neither pregnant nor post-partum, you are quite literally not the priority. This narrow emphasis has meant that emergency medical services – such as ambulances – have been reserved primarily for maternity cases in an attempt to save all the women in labor… at the expense of everyone not in labor.

The father of the sick boy rushed to our house and begged for help. I explained that while we would normally take him, Jeremy was in Lusaka with the vehicle and that he needed to push the issue with the nursing staff and remind them that an emergency is an emergency – maternity or not. He shrugged his shoulders in a way that resonates with how I usually feel when talking to government workers: preemptive defeat. He turned and slowly walked back – not rushing, since there was no where to rush off to. I shrugged also, mirroring his sadness and simply murmuring in his general direction, this sucks.

Four, short hours later, the sounds of mourning grew audible and the little boy died while an ambulance somewhere sat waiting for a “priority” case to call.

Wavering between acceptance and rage, I called Jeremy and talked/screamed/wept into the phone. We invest so much into community health, give me one reason why we should keep doing so while the people who can save the lives won’t!  The steady voice on the other end reminded me that the clinic staff are just following orders from someone above them – probably from someone who doesn’t care either, but is also following orders – orders from someone who is probably not in this country and whose paperwork keeps them detached from localized pain.

Fighting for women’s health might include reserving life-saving resources for mothers in need but truthfully I don’t think the woman burying her child today feels any bit of solidarity in this fact.

The ambulance policy is just one piece of a much larger MCH package by which women and children are being victimized for the sake of better outcomes on paper. Along with the promise of an always-available ambulance, our village received a “mothers shelter” which is a waiting house for women who live far and need a place close to the clinic to stay while awaiting childbirth. The concept makes great sense. On paper. But after the NGO seconded the building to local staff, the warm and welcoming maternity “shelter” soon became a concrete and controlling maternity “jail.” All women – even those who literally live across from the clinic ­– are required to move into the shelter a minimum of a month before delivery. If a mom goes into labor without having slept in that shelter, she is issued a fine. If the fine is not paid, the child’s immunizations are withheld until she pays.

Awesome. (insert face palm) 

Women loathe the shelter because they are consistently under-fed and constantly worried about the children they have left unattended at home. Many resort to using herbs and traditional “medicines” to induce labor – the only hope of jail break.

Apparently the only way we can improve delivery outcomes is to hold mothers hostage. After all, according to clinic staff, “You know how these women are.” Actually yes, yes I do, I know quite a lot of them, and they would love a safe and competent delivery in a place where they are treated with dignity and respect. And what’s happening here is not that. I was once asked by a regional MoH official why I chose to birth my children in America instead of at our local clinic and I couldn’t find any words for him other than, “are you serious?” The disconnect is unreal.

I have two friends who delivered babies in the last month. One mom, six weeks after moving into the mothers shelter delivered a baby that only lived a few hours. Mom had torn significantly during labor but the attending nurse, wanting either to protect herself or to avoid recording the infant’s death, decided to handle the stitching on site. For three weeks, mom was refused discharge while “waiting for her swelling to go down.” Finally the family demanded referral. Transporting her home from the hospital, I asked what the OB-Gyn had said. Sitting on her left hip and staring blankly out the window she answered, “he asked who the hell did this to me.” I gripped the steering wheel a little tighter, stewing on how I’m sure my friend must be so glad to have spent two months in maternity prison only to walk away empty handed and unable to sit.

I ran into another mom-friend crying outside the shelter. Her eldest, a three year old, had fallen into a fire and been terribly burnt. With mom gone at the mothers shelter and without a consistent person to watch him, the boy had been neglected and seriously injured. I encouraged her to go home and take care of her son, reminding her that she could come back if she went into labor. Wiping tears from her eyes she explained that she couldn’t leave because she wouldn’t be able to pay the fine. Realizing she wasn’t going to take my anarchist advice and just walk out, I told her I’d look after her boy’s burn care. With every dressing change, listening to him scream for his mommy, I felt both their pain. A few weeks later, mom went into labor and this baby too did not live. She went home to her burnt child, and wept bitterly for days.

Every funeral feels like emotional deja vu and I yell into the phone at Jeremy who is missing all this while enjoying ice cream in the capital, Is this what “saving mothers” looks like? Systemic violence and denial of agency, and still, the children die? I don’t believe for a moment that the public health experts want this. I’ve seen their shiny white pick-ups arrive for data collection, occasionally accompanied by a researcher from the US, looking very “fresh-out-of-Michigan-in-the-winter-white.” Brilliant minds have rallied around the challenge that is improving maternal & child health and their skilled research is meant to drive productive change. The data says “do this,” so the money creates systems to “do this” and the people on the ground are told they’d better “do this” – but I’ve attended three baby funerals in the last month and something here seems remiss.

And maybe, today, the people who call the shots and cut the checks are staring down at papers and not people, and they are looking at numbers and not names, and they will produce P scores that say this is all ok because, “on average,” the initiatives are working. But 184 villagers will gather around another little coffin tonight, and a mother will bring her burnt child to me for a fresh bandage, and a young woman will wince as she gingerly sits on a wooden stool, and none of them have the luxury of knowing where their stories fall on the scatter-graph. 

I don’t believe that the researchers who are driven by faceless data and impersonal  indicators are evil or that they hate women, but I don’t think they hear the stories that matter either. “Data,” as compared to living, breathing humans are two different sources of information and the unspoken confession of the NGO world is that data is just less messy to handle.

Sometimes, I’m frustrated by our search for funding to make our work go farther and deeper only to hear, “you’re too small.” Really? And by too small you mean too intentional? Too compassionate? Too relational? I get your math and what you mean by “efficient,” but my moral compass won’t lead me down that path. The individuals matter. The Big Numbers will win the Big Grants, but neither will feel the weight of grief resting on this village today. A small body will be lowered into the ground and the data capturers of Big Aid will take no responsibility because they didn’t even know his name.


His name was Raphael.