My son was born twice: first on a warm, late June afternoon in a busy east London hospital, and again five years later at a small children’s nursing home in Queens, New York.

I was six-and-a-half months pregnant when I was diagnosed with pre-eclampsia. On the day it happened, I had done a series of unremarkable things: shopping for bread, editing a story, calling my parents in Bangladesh. In the afternoon, my midwife came over for a routine visit. She checked my blood pressure and saw that it was high, so she asked me to pee on a stick. When I returned it to her, she told me to pack a bag.

It took us 10 minutes to get to Homerton hospital, where the slightly harried doctor on duty told me that the only cure for pre-eclampsia was delivery. I had trouble understanding how delivering a baby 10 weeks early could be classified as a cure, but I was not given time to argue. They prepped me for surgery, a needle in my back, compression socks on my feet. I lay down on the operating table and my husband cradled my head in his arms. I felt no pain, only pulling and tilting and rocking, as if someone had tied me down and set me afloat. Then, a silence I could have sworn lasted hours, but must have only been a few minutes, after which I heard a soft cry. A nurse gave me a brief glimpse of my son’s swaddled form before whisking him away to the neonatal intensive care unit. I didn’t know then that I wouldn’t see him again for three days, that he would be in the hospital for two months, and that, once released, he would refuse to eat for five years.

We arrive at St Mary’s hospital for children in New York on a Monday after a seven-hour flight from London. For weeks we have been rehearsing the following lines: “Where are we going?” “To Eating School!” “Who’s going to feed you when we get back?” “Me! I’m going to feed me!”

We have been listing the things we would learn to eat: sandwiches, cheese, French toast, pancakes. We have counted down the days. My husband and I have remortgaged our house and maxed out our credit cards on the tickets, childcare for our younger daughter, the house we’ve had to rent in a suburban enclave of Long Island. And now here we are.

‘For five years we dreaded every meal’: my infant son’s struggle with food – podcast Read more

Everything is just as I’d imagined – glass and steel, soaring ceilings, expensive furniture – except the hush. I’m used to hospitals in London and Dhaka, where no matter what time you show up, it’s always a struggle to find an empty seat in the waiting room. At St Mary’s, the plush blue chairs are vacant; the panoramic views over Little Neck Bay are enjoyed only by a handful of nurses on their breaks. Because I am so absorbed in our tiny part of this story, I notice the quiet but don’t stop to wonder. In any case, our unit, the Cindy & Tod Johnson Center for Pediatric Feeding Disorders, is downstairs and abuzz. In the central area where the feeding therapists work between sessions, there is the sound of chatter and keyboards, and in the corridors, parents ferrying their children to their sessions in therapy rooms furnished with highchairs, televisions and tiny kitchenettes.

Moments after we arrive, we meet the supervisor of the programme, Stella Yusupova. I’ve been corresponding with Stella for over a year now, and she has been briskly efficient, advising me on everything from housing to daycare. Stella takes us to the observation room, where we will watch our son via a video feed while his therapist works with him.

“He’s going to resist,” she tells us. “It will sometimes be hard to watch.”

“We trust you,” I say, wanting her to like me. “We’ve tried everything.”

We have. We have consulted paediatricians, nutritionists, teachers, psychologists, speech and language therapists, homeopaths. Everyone has told us some form of “it will get better”. At Great Ormond Street, the top children’s hospital in London, they told us that as long as he wasn’t starving, there was little they could do.

He is not starving. We have found one food that he will accept: baby porridge, a finely milled combination of oats and powdered milk. We mix it with formula, a calorie supplement and powdered vitamins. When we are really lucky, he allows us to blend in some protein and vegetables, but only if it doesn’t alter the taste, texture or smell of what is in his bowl.

Every day for the better part of five years, we have nervously heated milk and measured powders. For the better part of five years we’ve bribed him with an iPad, cajoled him into opening his mouth, and put the spoon against his lips. For five years we have dreaded every meal, knowing that whatever he consumed was never enough, knowing that we would have to wake up the next day and start all over again. For five years the anxiety has gnawed away at us, as we’ve wondered if today would be a good day, if he would eat of all his porridge or if he would refuse or throw up or start another weeklong hunger strike. For these years, our parenting has revolved around food. We have only left the house for small intervals. We have never eaten a meal together. We have watched other children with wonder and envy.

There are no specialist feeding clinics in London, or anywhere in the UK, that could help us. After frantic searching, reaching out to friends, posting desperate messages on online forums, we were finally told about St Mary’s. We went through the assessment, hoping that by the time we were taken off the waiting list something would have shifted and the whole journey would have become unnecessary. And of course, it hadn’t, and so we got on that plane and walked through those glass doors, dreaming of sandwiches.

If I had wondered, in my before-life, what my first moments of mothering might be like, I would not have envisaged being separated from my child. I had been warned about the sleep deprivation, the exhaustion, the unspeakable damage that would be done to my body, but I had not imagined being alone. One day I was shopping for strollers, and the next I was thrown into the dark world of prematurity, where my child was not quite mine. My belly was deflated, my body sawn in half, and yet the baby that had been tugging at me from the inside was not in my arms.

At first, the catheter had me shackled to my hospital bed. Then it was my blood pressure, which they couldn’t get down. My husband shuttled back and forth from the delivery suite to the neonatal intensive care unit (NICU). For many hours a day, he performed kangaroo care, holding our son against his bare chest. Later I would see photographs of the two of them together, our son’s face and his tiny hands clutching at his father. These precious first days would tether them to each other, a secret, mysterious bond I would always covet.

On the third day, after a tense argument with a midwife, I was allowed to make the journey to the NICU in a wheelchair that would only go backwards. I was reversed though the maze of the hospital into a room full of machines that clicked, beeped and hummed. When I was finally at his side, the plastic dome of the incubator divided us. A nappy covered half of his body, the rest of him bare except for a thin sheet of black down over his skin, the lanugo that was supposed to be replaced by fat in the last weeks of pregnancy. I was seeing something I was not supposed to see; all of this was meant to happen in my body but away from my sight.

I had to make milk. Right now the baby was on IV fluids, but soon he was going to need calories. First, I had to squeeze the colostrum out with my hands. I squeezed and squeezed. As the thick yellow drops came out – more like phlegm than milk – I had to catch them on the tip of a syringe. For days I failed to make enough, so they put him on formula, which he didn’t tolerate. They weighed him every Wednesday and Sunday: a verdict. Night after night, I kneeled on the side of my hospital bed and manhandled myself, pleading with my body to cooperate.

A thin plastic tube snaked into his nose and then down through his oesophagus and into his stomach. To feed him, they poured small amounts of milk into the tube and let gravity pull the milk into his body. Before every meal, they suctioned out the aspirate in his stomach. An empty stomach was a good thing. A stomach full of milk from the last feed meant he was not absorbing the feeds properly. If the milk came out green, there was a risk of infection, the dreaded necrotising enterocolitis that premature babies are susceptible to.

For two weeks, while the doctors worked to get my blood pressure down, I lived on the maternity ward. On the other side of the thin curtains that divided us, I heard the sound of women being wheeled in just after giving birth. I heard their children wailing. I found clots of blood in the drain of the shower. I heard their families cooing and I saw their blue and pink balloons tapping the ceiling. In the morning, the nurses put boxes of cereal and jugs of milk out on trolleys, and I met the women and babies I’d been hearing all night, the women shuffling on slippered feet, holding their abdomens. Who knew what secret wounds lay beneath their folded hands? My own wound had become infected. On top of antihypertensives, diuretics, morphine, I was given a course of antibiotics. After a day or two, the mothers and babies went home, and new ones arrived. I spent hours by my baby’s incubator, often just staring through the plastic and watching the spokes of his ribcage rise and fall.

For as long as I can remember, I have been afraid I would never have children. It wasn’t that I was desperate to have them, just that I was convinced I couldn’t. I didn’t realise until much later that I had inherited this fear from my own mother, who, after getting pregnant with me by accident when she was 21 and newly married, struggled with infertility for over a decade. On a recent trip to Paris, walking along the Rue du Commerce, I asked my mother what it had been like to move halfway across the world when my father got his first job with the UN. I thought she might mention her fear of French people, maybe tell me an old story about how they treated their dogs – like kings – but instead she told me she was sad the whole time, because as the years went on, she had to confront the possibility that there would be no more children. I’m imagining her now, pushing my red and white striped stroller through a gravelled Parisian park, cold winds rushing the tears along.

In the end, my fears were not unfounded. There were multiple miscarriages, ultrasounds with missing heartbeats, a trip to the hospital to remove the last of a pregnancy that remained lodged in my body. A doctor told me I had an abundance of something called “natural killer cells”, which at first sounded like a joke (it wasn’t); the next time I got pregnant, he put me on heavy doses of steroids. For 12 weeks, my hair fell out and I was in a state of perpetual rage, until finally, around the three-month mark, I began to feel better, and the odds of things going wrong began to fade. I assumed that after all that I had earned an uneventful pregnancy – maybe even some kind of moral credit, a little karmic abundance – and that I might now join the ranks of all the other women who were drifting through the looking-glass into motherhood.

Stella hands me a binder containing the rules of the St Mary’s feeding programme. We are to arrive at the hospital at 8am every morning. We will have four therapy meals a day, with breaks of 90 minutes in between. She shows us the various areas we can use to cover the time: a playroom, a grassy area outdoors, two cafeterias, a small library. At 2.30pm we will be sent home. I will be given strict instructions on how and when to feed my son for the rest of the day. I will take notes on every meal, document every gram he eats and every millilitre he drinks. I am given a chart with images of different types of poo. I will write down which type came out and what it looked like.

Stella introduces us to our therapist, Kisha Anderson. Kisha is tall with long, dark braids and a deep, soothing voice. I love her immediately. Right away she introduces three things that are about to change our son’s life. First, the maroon spoon. Apparently the silicone weaning spoon we’ve been using is too deep and narrow; the maroon spoon is shallow, encouraging him to open wide while allowing the food to easily slide into his mouth. Next, Kisha puts a foam handle on the spoon, making it easier for him to hold correctly. And finally, she sets a timer. Each meal will only last 20 minutes.

The kind of therapy they will use to get our son to eat is called applied behaviour analysis, and consists of a regime of rule-setting with consistent positive reinforcement. Kisha shows him a series of toys and asks him to choose. iPad or toy train? iPad. iPad or toy car? iPad. iPad or action figure? iPad. She takes notes. The iPad is now the reinforcer, the official carrot.

Kisha lets him watch 10 seconds of the iPad, then she says “my turn” and takes it away. She dips the tip of the maroon spoon into a tub of yoghurt and slowly places it in his mouth. He puckers, but doesn’t spit it out. Immediately she gives him the iPad again. He watches 10 seconds of Despicable Me 3, laughs at a joke involving a banana. Again she dips the tip of the spoon into the yoghurt. “Open your mouth,” she says to him. I have said these words a thousand times. He parts his lips and she swiftly scoops the tiny amount of yoghurt in. Again, the iPad. She takes notes. On the third try, he refuses. “I don’t like yoghurt,” he says. “Take your bite,” she says. He shakes his head. “Take your bite,” she repeats.

On about the sixth or seventh round, my son opens his mouth and the pink yoghurt disappears. Kisha beams. “Wow!” she exclaims, “you blew me away!” She pretends to fall off her chair. After his 10 seconds of iPad, he does it again. And again. She dips more and more of the spoon into the yoghurt container. At first he will only allow the very tip of the spoon to enter his mouth – the habit that has prolonged every meal – but Kisha insists that he open his mouth and clear the spoon. He won’t get his iPad until he does. Almost immediately, he obeys.

In the observation room, my husband and I are looking at each other and shaking our heads. This is the first time he has ever eaten anything that is not oatmeal, that is not beige, the first time he has taken a full spoonful of anything. Kisha is wildly enthusiastic every time he takes a bite of food. She is impassive when he refuses. “Take your bite,” she repeats. When he flails his arms, she says “quiet hands”. She displays no frustration, no anger, no exhaustion. “Take your bite,” she says, calm. He takes his bite. He clears his spoon.

That is day one. We sail home in shock and disbelief.

The nurses on the maternity ward were fed up of hearing me plead for a room. “Take me off the ward,” I begged. “I can’t listen to the babies any more.” Finally, they relented. In the narrowing warmth of dusk or the grey pink of first light, I was grateful to be able to cry behind a closed door.

Homerton has a level 3 NICU, one of the best in the UK. They put the sickest and tiniest babies in two wards at the back of the unit. Once he started breathing on his own, our son was transferred to a lower-dependency room. Still, there were rigid rules I had to follow. I was not allowed to take him in and out of the incubator too much. I was not allowed to let him nurse, even if he opened and closed his mouth like a fish. Every time I went near him, I had to wash my hands and rub them down with sanitiser. Aside from my husband and I, no one was allowed to touch him. When people came to visit, the most they could do was to peer through the window of the room he shared with seven other babies. There were nurses who were soft and kind, and nurses who were brittle from the job, but I had to suck up to them all equally, because when I was not there, they were doing all the mothering.

When my husband had to return to work, friends came to keep me company. I instructed them to bring cake. My friend Bee arrived with small chocolate muffins. “Poo cupcakes!” she announced. “You need to poo.” I was not allowing my wound to heal because I was sitting up all day in the high-backed chair next to the incubator. I took extra, illicit doses of painkillers. In the courtyard of the hospital, I sometimes perched on a square of summer and showed photographs to whoever cared to look. There he was, two-thirds nappy. The tube in his nose. The IV going into his ankle. He was so small, so wrinkled and translucent, it was difficult to imagine he would ever resemble those other babies on the maternity ward.

There is so much I didn’t know then. I did not know that eventually we would all go home. That in the first year, I would wean him when the books said it’s OK to, because it had been been seven months of all-nighters, because I was sore and tired and I wanted to write books again. That we would return him to the hospital many times; that there would be two bouts of pneumonia, vomiting almost every night, inhalers and steroids and nebulisers. That one day he would gnaw on a piece of bread, the first and last time he would ever do that, and I would think about that piece of bread every day for the next four-and-a-half years.

In the second year, I would start a novel, and the novel would be about a missing child. In the third year, I would find a trauma therapist. He would ask me to go back to that moment in the hospital when they wheeled me into the operating room, and while I told the story he would make me move my eyes back and forth. After 10 sessions, I would tell him I felt much better, and we would never meet again. The next therapist, Jill, would be a wonder. After a year of weekly sessions, I would casually tell her about the miscarriages, and she would suggest, tentatively, that perhaps the absence of those other babies weighs heavily on the one that survived. Might that have something to do with his refusal to eat?

Facebook Twitter Pinterest Photograph: Courtesy of Tahmima Anam

In the fourth year, I would give birth to a baby girl. A kind Sri Lankan doctor would deliver her by caesarean section – also premature, also small, but crucially, not as early, not as small. After the delivery, my bed would be wheeled into the NICU and the baby would be draped over my chest. She would look into my eyes and we would recognise each other and a tiny part of me would be made whole.

And I did not know, in the first days of his life, that my son would only have entered the world half-heartedly, that his refusal to eat would dog us, that occasionally when I asked him, “Are you hungry, baby?”, he would answer, “Mama, I’m always hungry,” and every part of me would break wide open all over again.

I knew nothing of this. I was with him all the time and yet I failed to reach him. I arrived in the middle of the night and found they had changed the tape that made the feeding tube stick to his cheek. One day it was decorated with bears, the next it was butterflies. The blanket under him was a different colour. A person in gloves had lifted him out, changed his nappy. Someone other than me. Our touch had to be mediated by a nurse, all the leads disconnected, the machines beeping frantically until he was placed against my chest and plugged back into the monitors that judged his aliveness. Often when I held him, he cried, a thin, desperate, tearless wail. I was hurting him, displacing the needle in his foot, chafing against the tube in his nose. Quickly I asked them to return him to the incubator, and then I just stood there in my pointless open shirt.

In the many hours of counselling that I have had in order to rid myself of the trauma of my son’s early birth, the time I return to again and again is not the moment they pulled him from my body – I have no memory of that – but the moment I turned to leave him in the NICU when they finally succeeded in discharging me from the hospital. Despite my protests, I had to go home while my child remained behind. My husband packed my bag and called the taxi. I stood in front of the incubator and my legs were fixed to the linoleum floor as I thought about how soft my bed would be, how warm, that I would be living in rooms that smell of laundry instead of bleach. I was abandoning him to the beeping machines, the IV that sometimes caused his leg to swell grotesquely. I had been there in the night, I had seen the way they sometimes let the babies cry for long intervals. The nurses were efficient, the best at their jobs, but they had to parcel out their love. So many tiny babies: it was impossible to hold them all.

Even at St Mary’s, where the rarest forms of feeding difficulties present themselves, our son is an anomaly. They refer to him as “cognitively intact”; there is no medical issue or learning difficulty that might have caused such a severe aversion to food. He has never had a tracheostomy, or a GI tube. He is not autistic. Those two months in the NICU are the only notable thing in his history. All the other children who pass through the unit in the six weeks we are there have had some kind of medical condition or intervention that made eating painful or impossible.

He chatters, sings, laughs and jokes his way through his sessions with Kisha. “I’m going to make this Cheerio disappear,” he says. He pretends to put it in his mouth and then quickly tosses it on the floor. Kisha’s expression does not change. “Take your bite,” she says, in a neutral and comforting monotone. In the first week, he samples yoghurt, scrambled eggs, and oatmeal, all blended to a smooth paste.

The 90 minutes or so between sessions are long, and I have to find ways of entertaining us. We roam the empty public spaces in the hospital, going from the vast lobby to the open balcony. Occasionally we see a nurse pushing a child in a wheelchair or encouraging steps in a walker. In the playroom, my son makes two friends: Lucia, a curly-haired toddler, and Larry, a four-year old boy. Larry hugs him frequently; at first he shrinks away, but eventually he gets used to the sudden lunges. Larry is autistic and refuses to eat anything but peanut butter and puffs, those rice snacks one gives to infants when they are first introduced to solid foods. Kisha refers to these as dissolvables. When it comes time for my son to start on solids, these are the things he will try first.

Of the many children we meet in the six weeks we are there, only one will speak in full sentences. Lucia isn’t one of them, though she is deeply expressive, charming, her laugh like the peal of church bells. Her father is a pastor, and her mother, Meghan, strikes me as something of a saint. She tells me, in a matter of fact way, that Lucia has a condition called Noonan syndrome, which affects everything from her growth to her digestion. Noonan is the cause of Lucia’s petite frame, her reflux, even her curly hair. They are here because Lucia has refused to take a feed from anyone other than Meghan. Nearly three years and Meghan has been apart from her daughter for no more than a few hours. Our three families get together between sessions; Meghan is always full of stories, and Larry’s mother appears to have an endless stash of Play-Doh in her bag, and in our time together we form something of a tribe.

Slowly, my boy and I build up a routine. We are greeted by the receptionist, Elaine, in the morning. We rush downstairs and have a pee. He learns to wash his hands in a sink that is activated by a wave of his arm. I deposit him in the therapy room then I rush over to the observation room. I put on the headphones. I take notes. The session lasts 20 minutes and then I rush in to praise him. We pee again. “I’m gonna pee on top of your pee,” he says. Running around the playground. Making up stories about the koi in the fishpond. Another session. Headphones, notes. Kisha is trying to phase out the iPad, leaving more and more time between rewards. Lunch: we debate whether to go to the front cafeteria or the back cafeteria. We put money in the vending machine and a Nutter Butter comes out.

The nurses in scrubs begin to recognise us, waving hello when we pass by. Once in a while I see a family, the child in a wheelchair, parents sifting through their packed lunches. There is an Asian woman who holds her grown son in her arms every afternoon, a web of tubes draped across his body as she cradles his torso. Pee again. Lucia wakes up from her afternoon nap and we do a little playing with a pretend ice cream store. Last session: he’s tired, he wants to go home. Finally, we are thrown into the furnace of the afternoon, another day complete, calories measured and consumed, new foods, little miracles of nutrition, flowing into my son’s body.

The 236 bus goes from Finsbury Park to Homerton in the East End of London. On all the July and August days of that year, it picked me up on its way and deposited me in front of the maternity unit. It was a summer of heatwaves and I was on that bus every morning, carrying a cooler of milk I had pumped overnight. When I arrived, I immediately scanned the chart that listed my son’s feedings, his nappy changes, the millilitres of aspirate in his stomach. He was not sick, but he was growing very slowly. Born at just over a kilo, he had to reach 1.7kg before they could discharge him. Those 700g took two months of bus rides, going home in the evening past London Fields, the smell of barbecues and sunset and people delighted by the long, warm evenings.

Like many of the other mothers, I would arrive at the hospital at 8am when the day nurse began her shift. When the doctors did their rounds at 10am, I irritated them by asking too many questions, ending always with the one that was perpetually on my mind: when would the baby be released? (I always received the same answer: when he is ready.)

My husband arrived at lunchtime with food and a request for me to go home, but I rarely did, and in the evenings he had to peel me away when the night nurse took over. I whispered in his ear that I didn’t like the look of the nurse, and then, at midnight, I woke him up and made him call the hospital to ask about how the night was going, was there any news, had the baby taken his last feed, what was his temperature? My husband went to work early in the morning and often stayed with the baby late into the night. I was overwhelmingly grateful to him one day, enraged the next. All of this he bore, allowing me to take up all the space, to declare myself both the victim and the perpetrator of this terrible episode, asking him questions he has no ability to answer. The incubator, the tube in our son’s nose, the tender fontanelle of his crown – these were the only things I allowed myself to care about.

Those weeks in the hospital where I had a body that was broken but healing, and a second body, other yet not quite separate from me, living in a plastic box that looked not enough unlike a coffin – were like nothing I had ever known or have known since. Sometimes, towards the end when things were stable and my son was gaining weight and learning to feed, I would walk the streets – the rare times I allowed myself to leave the hospital – feeling high because my child was not dead and not dying, because somehow I had got away with being terrible at pregnancy. At other times I was sad to my very marrow, a kind of sadness I have never quite shed, as if a small grain of darkness was planted in me for ever, blooming quietly in my bones even as my child was released from the hospital and sent out into the world to do the things that babies go on to do.

And when we did finally all go home together, two months later, I missed the hospital, the beeping machines that told me for sure that he was breathing, the nurses that drew a line between medicine and mothering. I missed the dark room where I expressed milk, the chatter with the other shellshocked mothers, the satisfaction of filling bottle after bottle with manna. Most of all I missed the numbers that charted his progress, and therefore mine. Everything afterwards went unreported – the months and years when I continually failed to get my child to eat, as his skin went from pink to porcelain to faintly greenish, all of this happened without the scaffolding of that hospital ward; no, it was hidden away behind the walls of our home where one body sewed itself up while the other struggled to find the light.

Before he was discharged, they took the tube out of our son’s nose and we saw his whole face for the first time. The smallest clothes in the baby shops were still too big, but his cheeks were no longer hollow, and there was even a slight pink tint to his skin. They gave him an ear test, weighed him one last time, and said we could take him home once I’d spent an entire night with him in the hospital. We were transferred to room three, a dormitory where we would share a rectangle of space behind yet another blue curtain. My husband was not allowed to stay; for the first time, it was just the two of us. I picked him up from the clear plastic crib they had placed by my bed, checked he was breathing, nursed him, put him back down for a minute or two, positioned him one way and another, then picked him up and started all over again. For the first time in weeks I didn’t pump in the middle of the night, and the milk soaked through my T-shirt and pooled around the waistband of my pyjamas. All night I hovered my hand over his little chest, floated my finger under his nose to feel the tiny warm gush of air that told me he was breathing. Neither of us slept.

The next day, we went home.

Our little family was finally born. We slept together on soft things, sofas and pillows and blankets. I smelled and smelled him. The bright overhead lights of the hospital faded away, the smell of medicine and detergent left his skin and his clothes. It was easy to reset the clock, to call it day zero, as if we had brought a baby home from the hospital like everyone else. In the morning there was no one to help me or tell me what to do. Every night that went by, the hospital seemed further away. I had taken no notes, recorded nothing but a few photos of myself looking small and grey. I swallowed my blood pressure medication and tried to obliterate the whole thing from my mind.

Yet a little chasm had opened up between us. I felt a deep connection, I felt the seesaw of euphoria, the desperate, grasping love. Yet I also suspected that there were parts of him I could not reach. I saw the way he was with his father, something easy about their relationship, as if they had known each other a long time. I can’t say if this is why I became preoccupied with feeding him, or whether his refusal to eat was something more than just his little mouth rejecting food; perhaps it was a refusal to open up at all, a kind of border that could not be crossed, at least by me, not even by me.

Every morning when we pull up to the parking lot at St Mary’s, we tail a line of yellow school buses. The doors of the buses open, and instead of a tumble of children, there is the whine of a mechanical lift. The lift slowly deposits one child after another into the care of a nurse, who will wheel the child into what is referred to as medical daycare. The rest of the children – the in-patients – are those who can’t live at home. Meghan tells me she’s met a father whose child was born premature and is still attached to a ventilator. The daughter might go home in a year. The father tries to visit, but he only manages a day or so per month. When I question one of the nurses, she tells me the hospital is technically classified as a nursing home, for children too medically fragile to live at home.

Later, I convince one of the hospital authorities to take me on a tour. I find impressive, thoughtfully designed wards, sunshine streaming through large, unframed windows, playrooms and classrooms and communal dining rooms. All mostly empty. Through the open door of the cabins, I see children lying prone in the dappled sunlight, the filtered air around them silent except for the hum of expensive machines that are keeping them alive.

“Why is it so empty?” I finally ask.

“A lot of these children don’t have access to their families,” he says, with great sadness. “We try not to judge.”

Before we arrived, Stella warned us that it was unlikely our son would graduate to “table foods”, ie the sorts of things we consider to be food – those pancakes and sandwiches we’d dreamed of. There were so many things to work on: self-feeding, increasing the variety of purees he accepted, getting rid of the iPad. All of these would take time. She gently encouraged me to let go of the hope that he would abandon the purees altogether.

At the end of the third week, I’ve decided that Stella is wrong. He is putting the maroon spoon in his mouth; he is finishing an entire pot of yoghurt in 20 minutes. I start bringing in purees of different colours and flavours. One day it’s spaghetti and meat sauce. Another day it’s a bright-green spinach pasta. Everything is blended to the level of a high-end French restaurant, buttery, savoury, completely smooth.

Kisha starts to train me in what she calls the protocol. Now I’m in the room with him, and she’s watching on the screen. I try to emulate the tone of her voice. Every time he takes a bite, I cheer wildly. We make up rhymes and high-fives and mini dance routines. Whenever he is confronted with a new food he says “I don’t like that” or “That looks like a green poo.” Kisha instructs me to ignore the negative vocalisations and reinforce the eating. “Take your bite,” I say. Like magic, he obeys.

With three weeks to go, I am sure Kisha can teach him to chew and swallow. She starts by putting tiny bits of graham cracker on his back teeth. He parts his lips, bares his teeth, and tries to chew. “Chew chew chew,” Kisha soothes. He swallows, gags. Unfazed, she tries again on the other side. “Chew chew chew till it’s really, really soft.” He bobs his head up and down. “Not with your head, with your teeth.” He tries again, gags, vomits.

In the fourth week, Larry starts eating apples, and Lucia has a breakthrough. She starts to drink milk from a honey bear, a kind of bottle that can be squeezed to propel the milk into her mouth. She takes the honey bear bottle from her father, then her aunt. I can see the relief on Meghan’s face; over the weekend, she and her husband leave Lucia with their parents for two nights. “How’s it going?” I text her. “AMAZING.” We celebrate these victories together, cheering one another on. But my son is not able to chew. Kisha tells me it’s because he struggles to lateralise his tongue, which means he can’t move the food over to his teeth to grind it up. He tries to swallow it while it’s still solid, which is why he gags.

We keep trying. Tiny, crumb-sized pieces of graham cracker. Bits of toast you can hardly see. “Chew chew chew,” Kisha chants. Chew, swallow, gag, vomit. It goes on. We keep our spirits high and concentrate on the victories – he is spooning purees into his mouth by himself now, and there is a range of things he’s willing to eat. Over the weekend, we go to an ice-cream parlour and order him a milkshake. He drinks it down. These are miracles, unthinkable a few weeks ago. I want him to sit at the table with us and fight over the last piece of lasagne in the pan, but this is where our magic lives, the celebration of a boy putting a spoon into his mouth all by himself.

On our last week at St Mary’s, I meet a Bangladeshi woman and her daughter Mahima. Mahima was born at 27 weeks – just three weeks before my son. But the doctor on call inserted her breathing tube incorrectly, so she had spent the first three-and-a-half years of her life at St Mary’s, with a tracheostomy attached to an oxygen tank. Unable to take even the slightest breath without the ventilator, she had barely been out of her room that entire time. Now, at seven, she has been free of it for half her life, but her scar, a round pendant at the base of her neck, and the deep rasp of her voice, are permanent reminders of her injury. The therapists are just beginning to encourage her to taste a few things. Sweet potatoes on the tip of a spoon, a little smear of avocado.

I have often thought about all the children my child could be. That he could’ve been born at a reasonable time, in a reasonable way. That he might have eaten. That he might have been less of a mystery to me. That he might not be afraid of hand dryers in public bathrooms. A child less fragile, less a reflection of the profound sadness of being alive. In those first days of his life, he seemed like an incarnation of mortal suffering, and as he grew, that translucent skin never quite thickened. I imagined a robust, adventurous child who laughed with abandon, who demanded ice-cream in parks and broke into the gummy vitamins and screamed for spaghetti bolognese when I offered my mother’s fish curry. I imagined that child. In my darkest moments, I longed for him.

I realise now that this boy had required a certain kind of mother, and for some major part of his life, I had been unable to be that mother. Over the years, as it had slowly dawned on me that what was being asked of me was more than what I was giving, I wondered if it was in me, or whether I would have to live for ever with the knowledge that I had fundamentally fallen short. I say this not with guilt or self-pity – all mothers feel guilty and all imagine they have somehow betrayed or let down their children. Whatever the demand is, we are unable to meet it, because fundamentally what is being asked of us is a form of consistent self-abnegation that is almost impossible, trapped in our own subjective bodies as we are.

But despite the real limits of possibility, I could have done, if not better, then different. I could have come out of that hospital after those two months of gothic drama and continued to commit myself to the regime I had become accustomed to. Instead, when my son came home from the hospital, I thought I could treat him like any other baby. I thought I deserved a straightforward child. I put him on a schedule, I fed him at certain intervals, I weaned him when the books told me to. I built expectations and standards and made demands. The expectations were too high; the demands were too great. When it was time for him to move on to solid food, and he refused, I started doing the dance that I have seen other parents do, the bribing, cajoling, punishing, rule-setting dance. I distracted him and he ate. I plugged him into his iPad and, absorbed in the domestic drama of Peppa Pig, he opened his mouth and swallowed.

What I didn’t realise was that he was afraid the whole time. Every time the spoon zoomed towards his little mouth, a flare of panic went up inside him and the fear built up until food was a terrifying, gag-inducing instrument of torture. I tortured him three, four times a day for five years. I did it because I had to, because I didn’t know any better, and because as his mother it was my duty to ensure that my child did not go hungry.

Lucia graduates from St Mary’s about a week before we do. They put her in a synthetic blue gown, and she ambles through the central corridor of the unit. A small speaker plays Dynamite by Taio Cruz. I came to dance, dance, dance, dance. Everyone cheers. Lucia’s father makes a speech, but I am sobbing so keenly that I can hardly make out what he’s saying. Lucia is presented with a certificate, and we share sandwiches from Ben’s Deli. Meghan and I hug, promise to keep in touch.

Later that week, we take our son to a cake shop and order a chocolate cake with raspberry mousse. He asks that “Thank you, St Mary’s!” be written in blue. When we arrive on the unit, Kisha helps to fit his graduation cap.

I have been wondering what to say. What I want to talk about is not just the people we have become, but the people we no longer are. I am no longer the mother who has failed to feed her son. My son is no longer the boy who can’t go to school because he might faint with hunger at the end of the day. The word “miracle” comes to mind, but seems inadequate. I see the next few months unfolding before me, finally being free of the hospital, getting back to my desk, maybe even having an adult conversation in daylight hours when I’m not so tired my teeth ache, and perhaps – can it be possible? – living without that hum of worry, without the question: did he eat today?

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Two days after we return to London, my son starts school, and a few weeks after that, he sits in the cafeteria with all the other children. I’ve bought him a flask to keep his pureed lunch warm. The maroon spoon goes with him, along with a suction bowl that sticks to the table. He puts on his school uniform and runs through the school gates every morning and comes home with stories and drawings and stickers for good listening. The colour of his skin changes to a warm gold. A few months later, as the days shorten and we pull our coats and mittens out of storage, I notice when I give him a bath that I can no longer see his ribs. After he goes to bed, my husband and I discuss the sight of his not-ribs and we hold each other and cry and laugh.

On our final day at St Mary’s, I get up in front of Stella and Kisha and the other parents and the therapists in their blue scrubs and I try to say something that captures what has transpired through this hot New York summer. I realise it isn’t just about the eating; it’s also that our time at St Mary’s – a kind of togetherness we haven’t known since those days in the NICU – is as close as I will ever get to understanding what happened in that other long summer five years ago. As Kisha puts my boy into his shiny blue graduation gown, I feel for the first time that the separation between us is over, my own doubts about being the right mother for this child finally put to rest. It isn’t just that he is coming into the world more fully, but also that I can say with confidence, finally, that I deserve him, that I can forgive myself for forcing him into the world before he was ready, and that after all these years, we are finally together, strangers no more.

• This article was amended on 10 April 2019. The phrase “every millimetre he drinks” has been changed to “every millilitre”.

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