Foreword: the episode that I am writing about here happened some months ago. It’s taken time for me to be able to write about it – time even to be able to think and respond to it, but the story of this family and how they touched me increasingly weighs on me and feels like one that deserves telling.
Benedict was cradled in her mother’s arms when I first met her sitting on the veranda of the inpatient department (IPD). A ten-day-old 1.5kg scrawny scrap, the bundle I lift from her mum is more blanket than baby. Diarrhoea the last two days, her mother reports, hasn’t wanted to breastfeed this morning.
I unwrap her and lay her featherweight form across my lap, naked and squeaking protests, to examine for signs of dehydration. She thanks me by weeing on my trousers. Not too dehydrated then. I smile wryly, sigh, dab at the damp patch, and pass her over to Alex who is our interim expat doctor while Rob is on holidays to start the admission procedures.
Examination, IV cannula, antibiotics, paperwork. Apparently she was born at our hospital so we send one of our secourists (nurse's aides) over to maternity to find out what her original birth weight was.
I help the mum express a little breast milk into a sterile cup and show her how to coax Benedict to feed using a syringe. It doesn’t take much for a premature baby – as she seems to be – to lose the will to suck properly, but she takes the first few millilitres avidly enough. As we show her mother and grandmother to their place in the corner of the paediatric room, three generations of women squeezed onto one bed, I am cautiously optimistic that we can knock this infection on the head and get her through this. She certainly seems to be a little toughie.
The next couple of days are uneventful; baby Benedict takes syringe feeding well, pees and poops regularly and even starts breast feeding normally again. Benedict’s mother has slightly better French and a lower voice than most of the women here – an attractive throaty alto. I spend a little more time with them than maybe I do some other patients, drawn by the little family’s warmth and smiles each time we enter the crowded room and by the indomitable little scrap of strength on the bed that we are all focused on.
All of this is going on against the background of some degree of hospital upheaval – I am set on improving the ordering and medical supply systems in place and bringing them more in line with some of MSFs protocols. Every little change is hard won though and I am having to push the hospital staff to be more diligent about counting and cross checking orders. It’s not winning me many fans.
Saturday comes around and things seem less rosy. Benedict’s temperature and oxygen levels were low this morning and she lacked the energy to breast feed again. We tape an oxygen cannula to her tiny wide-eyed face and go back to syringe feeding. Her mother and grandmother take it in turns to nurse her kangaroo style on their bare chests. Her IV cannula chooses this morning to stop functioning so we remove it and leave one of the nurses trying to site another one in her other arm.
Alex reviews her chart – what lab tests we have are normal and mother was in good health through pregnancy and delivery according to the report from maternity. We cross our fingers and hope that the antibiotics start working soon.
An hour or so later I am walking towards IPD when I see one of our more sluggish secourists moving at an unusually (for him) rapid trot towards the paediatric room. I pick up my pace and arrive to see Alex crouched by the side of Benedict’s bed fumbling with an ambu bag and – oh my god, they are still trying to get an IV cannula in, so we have no way to get drugs into her right now.
I shoo some bystanders out of the room and shout for someone to bring an intraosseous needle. This wide bore specialist needle allows us to deliver fluids and drugs directly into the bone marrow space of a crashing patient in whom we can get no venous access into.
Benedict’s stick thin legs are splayed on the bed and I grip one tightly to stabilize it as I push the needle into her tibia, which feels as thin and insubstantial as a bird’s.
Once in we push in glucose and a fluid bolus and I close my hands around her chest and begin CPR – in a baby this small, it only takes the slightest pressure exerted by my thumbs to depress her ribcage.
The mask of the infant ambu bag that Alex is pressing to the baby’s face is too big, hopelessly too big, and air hisses uselessly out of the gaping space around her chin. He adjusts it several times, fruitlessly. We don’t have a premature baby mask in IPD, hell, I’m not even sure that we have one over at maternity so I’m not about to waste time looking for a different one*. I ask for a second time that day “Did this mother definitely go though all her antenatal care here?”
”Yes” comes back a chorus of my staffs’ voices, confused as to why I am asking so insistently.
Here’s why. Every mother that delivers with MSF is tested for HIV and other STIs so if this mother and baby were positive, we’d know by now.
This knowledge in hand, I take a deep breath, gently push Alex’s hand with the ambu bag away from the baby’s face and lean in to do something I have only previously practised on a rubber mannequin. The slightest puff of air through my mouth into Benedict’s nose and lips and I feel her chest rise. The effort on my part is minuscule; I am able to give all five rescue breaths for her with less than one of my own. Breaths done my fingers resume the compressions, her elastic ribcage flexing beneath my hand. Two more breaths. 15 more compressions. Two more breaths. 15 compressions.
I lose count of how many times I’ve done this when the baby finally takes a shuddering inbreath of her own and lets out a faint mewling cry. And a few seconds later another. Alex replaces the oxygen on the baby’s face as her breaths become more regular and her heartbeat flutters under my encircling hands with increasing speed. We look at each other with mingled relief and resignation. Relief because she’s breathing again. Resignation because realistically, for how long?
Alex explains to the mother and grandmother that the Benedict is still very sick so we are going to give an IV glucose infusion and breast milk through a nasogastric tube to try and help her. The mother’s eyes regard us with a quiet intelligence as she nods comprehendingly to him.
Those things done, we try to resume the work of the rest of the hospital, with mixed success. Benedict becomes apnoeic [stops breathing] again, and again we are called back to her. In total she requires resuscitating not once, but three times that afternoon.
Disproportionate to the physical effort of the resuscitation, which is minute compared to that of working on a fully grown adult, I am physically exhausted by 4pm; my back and shoulders ache fiercely with tension and I feel as if I have been through a mangle. After the third resus I place a once again erratically breathing Benedict skin-to-skin onto the chest of her mother again – the only way we have of preserving her body heat – and, still kneeling on the floor, lean fatigued onto the bed. The grandmother, sat across from me, suddenly leans forward, places one hand lightly over mine, her other reaches up and lightly touches my head as she murmurs something in Sango.
“Qu’est ce que elle dit?” I ask the mother “What is she saying?”
She is wishing that God go with you, she replies in French. Her warm eyes meet mine and I suddenly feel hopelessly divided from these women – by race, by wealth, by language and now by grace. Surely if they should be asking for God to be with anyone right now it deserves to be their baby not me. And yet that is their prayer.
I have never felt more wretched or useless in my life and mutter my excuses as I rise and clumsily exit the room, my eyes now smarting with unshed tears of frustration and a sense of impotence.
Alex sympathetically puts his arm around me as we walk away from the hospital building, and for once I don’t give a damn that that is probably not appropriate in a public place and just bury my head for a second onto his shoulder, grateful at last for a moment to cling onto something, someone stronger than myself and feel the thud of a heart and the warmth of body of someone whose every breath doesn’t seem to depend on my own. I can’t let go though. To cry now would mean not stopping the whole way home.
As we walk we review one more time the treatment options we have here, what we have done and what more we can do for Benedict.
The answers - not much, everything, and nothing in precisely that order.
She needs an incubator to stabilise her temperature, a central line to deliver drugs and fluids, a ventilator and sophisticated monitoring equipment to help her breathe. There is no doubt in my mind that at home, and with western level resources, Benedict’s survival would be assured.
But all she has here is the warmth of her mother’s body, a dribble of IV glucose and my breath. And odds are that won’t be enough.
Back at the expat house that evening, I bury myself into my bedroom and into the almost welcome mundanity of my pharmacy stock cards, checking entries and filing them more neatly into separate binders by class of item in an effort to not only distract myself from the emotions of the day, but also in the hope of winning back the affections of some of my slightly disgruntled pharmacy staff who can’t understand my apparent obsession with alphabetising things.
My VHF radio handset sits on the floor next to me where I am surrounded by paperwork and I jump at every little crackle from it. I’m not on call tonight – one of the inpat nurses is – but I stay on the on call channel nonetheless, volume turned up, hoping against hope not to hear the call from IPD that seems inevitable.
It comes just after midnight.
I scramble out of bed fully dressed, bolt across the compound and get into the Land Cruiser, which lurches out the compound gates onto a back road to pick up the inpat doctor and nurse and then turns up the hill to the hospital. It feels to be driving over the rough roads at an even slower pace than usual.
Once in the hospital grounds we tumble out of the vehicle and into the door of the paediatric room. And are faced with an empty corner bed. The other patients in the room turn limpid eyes and sympathetic faces towards me and a secourist comes in to explain that after Benedict desaturated and stopped breathing a fourth time, her family expressed a wish take her back home.
I just wish I’d been here, is all I can say.
I probably wouldn’t have been able to do anything anyway.
I thank the secourist, and we leave again.
The weight of Benedict’s death and the lack of ability to even say goodbye to her and her family weigh heavy on me for the rest of that week, and despite Alex and I being frantically busy in the hospital, on more than one occasion in the middle of my work days I am overwhelmed by a crushing feeling of inadequacy and have to chew the inside of my own cheek to stop from crying. At night, back in the privacy of my room however, my eyes remain stubbornly dry.
The week, endless as it feels, passes; Rob returns from holiday and Alex leaves. As pleased as I am to have Rob back, it’s sad to say goodbye to Alex too – working so intensely together with someone in this context forges a depth and quality of friendship that you just don’t find elsewhere.
Some days later I am standing outside the lab, having just explained for what feels like the umpteenth time to the staff in there that no, I cannot just go to the medical store whenever they realise they forgot to order something; that they actually need to inventory and order better and on a more regular basis. I am beginning to feel like the proverbial stuck record. My shoulders sag, and I begin to move towards the IPD to make sure that their weekly inventory and order is going according to plan today.
Just at that moment two women standing a little off to one side catch my eye and having done so step hesitantly towards me. Out of context I fail to recognise them for who they are for a confusing moment and it is with a rush of embarrassment when they speak and the throaty voice of the younger of the two of them jogs my memory, that realisation dawns that it is Benedict’s mother and grandmother come back to look for me and Alex.
Alex has gone I tell them, and then the words seem to dry up in my mouth and a lump rises in my throat.
I’m sorry, I want to say. I’m so sorry that we couldn’t do more, that we didn’t have more. I’m sorry that after the time we spent together that one of us wasn’t able to be there at the very end for your daughter.
Seeing my awkward silence, the grandmother reaches out her hand to me again and repeats the Sango phrase that she has said to me once before. With a quick jerky movement I step into her outstretched arms and simultaneously the mother moves forward into mine. The tide of tears that I have been holding back for days now rises up and engulfs me and as we stand there in a tangled embrace I bow my head onto these women’s shoulders and just let the dam burst. In that moment as we cry together suddenly the former divide that I felt drops away, and between us there is neither rich nor poor, old or young, we are all just who we are – three women united together in our grieving for a child.
Very few other words are exchanged. We don’t have any. We don’t need them.
I watch them walk slowly away, and I feel different somehow, able to stand a little straighter. The weight of grief and responsibility and failure I had been carrying about since Benedict’s death is gone – no, not gone, but transformed, and in its place is left only the weight of the privilege of being here and being able to have shown that we care, that their baby’s life was worth fighting for, that she mattered to someone other than just them. The burden is no less heavy, but I am more able to bear it.
As they vanish though the gates, I turn and begin to make my way back towards hospital. I know that we will very likely never see each other again. But I suspect also that we will never forget each other. And I for one feel blessed for having known them, and the brief fragile human spark that was their daughter.
*we have a wide range of ambu bag masks in different sizes however babies as small as Benedict are very, very rare in this setting.
Disclaimer: names have been changed to protect patients’ identities.