World Prematurity Day

Matilda’s Story

Looking back, I can’t help but wonder whether it was an omen that I found out I was pregnant on World Prematurity Day. It wasn’t my first pregnancy, but I was yet to be a mum, so those initial months were riddled with worry and I couldn’t allow myself to relax until I got the all-clear at my 20-week anomaly scan. Finally the nausea, dizziness and incessantly dry mouth that had blighted my first trimester subsided. I knew that my life was about to change, but I was ready, or so I thought – I couldn’t wait to meet my little girl. In reality, nothing could have prepared me for meeting her quite so soon.

At 24 weeks I awoke to the pain of contractions, five minutes apart. I phoned my community midwife, who said it was probably Braxton Hicks. Unconvinced, I went to the labour suite where a doctor probed my stomach then muttered something about a urine infection, prescribing antibiotics and sending me on my way. Instinct kicked in and I insisted upon a full examination. The next thing I remember is the words, “you’re not going anywhere – you’re 3cm dilated.” Out of nowhere, a whirlwind of medical professionals swept into the room, and I became a human pin cushion, cannulas piercing countless veins as I received unpronounceable medicines to try and stop my labour, as well as magnesium to protect my baby’s brain and steroids to stimulate her lung development. She was on the cusp of viability – even if she did survive, the chances of cognitive disabilities and conditions such as cerebral palsy were high, so every day I managed to keep her in utero was critical. After 48 sleepless hours on the labour suite, my contractions finally stopped. Allowing myself to feel a trickle of relief, I levered up off the delivery bed … as if on cue, my waters broke.

I spent a further 72 hours hooked up to those drips, monitored around the clock, waiting for what I feared was inevitable. Somehow, she clung on with just 2cm of fluid surrounding her tiny body. I was transferred to the maternity ward, filled with mums who had just given birth to full-term babies and other women going into spontaneous labour in the corridors. I was desperate to go home but because I was dilated, the risk of infection was too high. After a fortnight in limbo, the contractions started again, and this time they couldn’t be stopped. At 1am, I made a frantic phone call to my husband John. With no access to transport other than his feet, he ran three miles through the night to be by my side – when he arrived he was hyperventilating. “You’re in labour, stop worrying about me!” he protested when I insisted he lay down and recuperate. The tube supplying my gas and air became detached, one end suckered to my thigh, the other writhing around the room like a possessed snake, myself mid-contraction, not finding it half as amusing as I do in retrospect. I concentrated solely on powering through the pain, not daring to think of the worst or even the best-case scenario, but when Matilda Evelyn Cotton burst into the world, pink and writhing with both eyes open, she captivated every fibre of my heart. It was 8.42am on 25th April 2018 and she had made it to 26 weeks and 3 days gestation. I ached to hold her, but instead, she was ventilated, wrapped in a plastic bag to keep her warm and whisked away to the Neonatal Intensive Care Unit (NICU), where I didn’t see her again for a further six hours. Somehow I kept my anxieties at bay, the rush of post-birth hormones making me giddy, a glow radiating from every pore, despite my physical exhaustion. I was in a bubble … but bubbles always pop.

NICU was like nothing I have ever experienced – I find it hard to write about it even now. The first time I saw my fragile 1lb 10oz bundle surrounded by a spaghetti junction of tubes and wires, I asked one of the nurses why the monitor above her incubator was beeping. “Oh, that’s a desat,” came his response. Desat, it transpired, is short for desaturation and Matilda’s oxygen levels, which should have been at 100%, had dropped to just 60%. A few adjustments later they rose again, but then the monitor was flashing and dinging once more and Matilda was having a “brady” – bradycardia, meaning her heart was slowing to a dangerous pace. When I eventually tore myself away to try and rest at the doctor’s insistence, I returned to find 17 “apnoeas” – temporary cessations of breathing – recorded on Matilda’s chart. This drove a spike of panic into my chest, at odds with the breezy composure of the staff caring for her. I looked around at the fledgling lives in the nearby incubators, the chorus of monitors, the blanched-faced parents. None of us wanted to be there, but we all knew that the alternative was far worse. Due to Matilda’s prematurity and subsequent chronic lung disease, she faced a minimum three-month stay – John and I realised that in order to keep strong for her we must acclimatise, and make this extreme environment our norm. Keen to be involved in Matilda’s care, we began changing her minuscule nappies through hatches in the side of her incubator. Her underdeveloped respiratory system meant she was unable to cry and she remained too fragile for us to have any physical contact outside the incubator or for her to drink my milk, but I started expressing and storing it for when she was ready. I was discharged from the maternity ward, John and I assigned a private room in the patient hotel two floors above the unit, albeit with a bed scarcely big enough for both of us, its mattress seemingly made of bones.

On day four of Matilda’s life, an early morning phone call wrenched us from fractured slumber – our daughter had deteriorated rapidly, her stomach growing distended for no fathomable reason. This time, no intervention could silence the monitor’s warning sounds. I’ll never forget the consultant telling us that we needed to prepare for the worst. It was the bleakest moment of my life and one which I’m still not ready to dissect … I’m not sure I ever will be, suffice to say that the tormented, bewildered expression in Matilda’s eyes as they pumped her full of adrenaline to keep her heart beating will haunt me forever. In a last-ditch attempt to save her life, a specialist was brought in from another hospital and we faced a decision – consent to high-risk surgery to investigate the cause of the swelling or do nothing, in which case she would die regardless. My hand was shaking so much I could barely sign my name and it continued to tremble for the next hour until the surgeon returned with the answer that had eluded us – a tube supplying nutrient solution into Matilda’s vein had migrated and flooded her system, a problem so rare he’d only seen it once in his entire career. After making an incision in her abdomen, he’d fashioned a drain from the finger of a surgical glove to siphon away the fluid. Gradually, the puffiness which had spread throughout her entire body deflated, but the trauma had placed such strain on her organs that her heart was galloping at 220 bpm, threatening to give out, her kidneys failing. After two days of Matilda failing to urinate – therefore limiting the cocktail of stabilising drugs they could infuse into her system – John and I were ushered into what I came to know as “the room of doom,” a sickly déjà vu washing over us as once again we received the “we’re doing everything we can, but …” speech. John and I became zombies, permanently exhausted, but too terrified to sleep, for fear of the phone calls which came regardless, never revealing more than that we must “come downstairs immediately.” We braced ourselves to say our last goodbye so many times it’s a wonder we have any nerves left that aren’t frayed to shreds.

After five fraught days, Matilda passed 30ml of urine – I’d never felt so elated about wee in my life! Finally, we’d turned a corner, or so I thought until I was changing her nappy and uncovered a sight that made my stomach somersault – her entire bowel had wormed its way out through the surgical drain hole and was withering before my eyes. What happened next is stranger than fiction – Matilda and I blue-lighted across the city during Friday evening rush-hour with Staying Alive by the Bee Gees blasting from the radio – I don’t think I’ll ever be able to listen to that song again. We arrived at a different hospital, known for its surgical expertise and found ourselves thrust into its innards, John and I left with no choice but to place our trust in the hands of strangers who yet again, against the odds, saved her life. Matilda’s resilience astounded me – her name means strength and she embodied this with every ounce of her being. I was in awe of my tiny warrior and frustrated at myself as my own strength waned. Neonatal units are humid at the best of times, premature babies unable to regulate their temperature, but the country was in the grip of a heatwave, and unlike the hospital where Matilda was born, this one offered no respite – no green space, no fresh air, just a maze of windowless rooms, reeking of disinfectant. How was I supposed to stay sane in this hotbed of tension and malaise, incubators packed in like sardines with no space for privacy? How on earth did the staff deliver such an awe-inspiring level of care day and night in such dispiriting conditions? How the hell can our government justify such a grossly underfunded NHS?

When Matilda was eventually transferred back to our original unit, it marked the beginning of a more even keel. The 12th day of her life brought the moment I had yearned for – my first chance to hold her in my arms and feel her heart beating against mine. It was sublime and bittersweet in equal measure and the tears I had suppressed for so long erupted. From thereon I tried to have skin to skin contact with her every day, even if it was only for 10 minutes before her temperature dropped and she had to go back in the incubator. Matilda’s ventilator was extubated and replaced with a CPAP machine, which provided continuous pressure via her nasal passages to keep her airways open. Finally, she was able to ingest my milk, albeit via a nasogastric (NG) tube as she was too small to co-ordinate suckling, breathing and swallowing. John, the nurses and I fed her every two hours while I expressed milk at every spare moment. My head knew long before my heart accepted it that this was unsustainable. It’s impossible to bond with an electric pump – I felt more like a dairy cow than a mum. My milk supply dwindled and I simply wasn’t producing enough to feed Matilda, so we supplemented her diet with formula. Her weight picked up and the doctors began to wean her off CPAP, supplying oxygen via a nasal cannula instead. It was a fine balancing act – push her too hard and she’d crash, push her too little and her lungs would never mature enough for her to breathe on her own. For two long months it felt like we were treading water and would never get out of the high dependency unit. An outbreak of MRSA was the last thing we needed – fortunately it was contained and Matilda wasn’t affected, but this necessitated a move to another bay, next to a couple whose day-old son was in a critical condition. The dad was sobbing, the mum frozen in shock – a torrent of memories came rushing back, Matilda at death’s door. I caught the eye of the mum opposite me who had been on the unit even longer than I had and realised she’d witnessed me in the same state of torment – she later told me that watching Matilda fight for her life had uprooted those memories for her too. As grim as this cycle was, it made me appreciate how much headway Matilda had made – suddenly her progress was snowballing and after managing 48 hours off CPAP she was transferred from an incubator to a cot and made the long-awaited move to the low dependency unit.

It was wonderful that I could now cuddle Matilda whenever I wished and that my friends and family could touch her at last. We ticked off the milestones – first bath, first tube-free feed, first day breathing entirely unaided. She found her voice and even started to grow nipples, which were absent at birth! Cautiously optimistic that we were over the worst, John and I gave up our hospital room and moved back home. He had returned to full-time teaching and getting a decent night’s sleep in the bony bed was impossible. Every morning when he left for work I travelled to the hospital and spent the day caring for Matilda, John coming straight from the classroom to take over in the evenings. How he managed to hold down such a demanding job and remain a bastion of strength for the two of us is beyond me. When Matilda was diagnosed with Retinopathy of Prematurity (ROP) and required immediate surgery to save her sight, I needed him more than ever. A post-operative move back to the frenetic high dependency unit was inevitable, but no one could have anticipated that Matilda would catch pneumonia, stalling her recovery and requiring her to be reventilated. One day of intensive care turned into a week – it felt like we were slipping back to square one. Furthermore, it was too early to gauge the long-term effectiveness of her eye surgery and whether the abnormal blood vessel growth which threatened to detach her retinas would return. The protracted heatwave had outstayed its welcome and I’d reached saturation point. Matilda also decided she’d had enough and self-extubated, yanking out her ventilator tube. At this point, I realised she was as feisty as her mum and we were damned if this was going to beat us.

Another month in low dependency followed as we established feeding – Matilda suffered from severe reflux and would desat every time she ingested milk, the monitors chirping their alarm. It was like groundhog day, stuck in stasis while a conveyor belt of mums and babies came and went, a friend of mine delivering her healthy baby next door on the labour suite, discharged the following day! When I finally wheeled Matilda outside into the courtyard, I was elated. Her monitoring equipment prevented me from taking her far, but it was a moment I had coveted for so long, through every bleak hour that I’d gripped her fragile hand and promised her there was so much more to life. I pined to take her home, but she was still struggling to breathe. A tug of war between myself and the consultant ensued – he was pushing for a discharge date, yet only the week before, a baby seemingly more robust than Matilda had turned blue upon arriving home, the dad performing CPR for five minutes until she spluttered back to life. Matilda failed an overnight oxygen saturation study and finally, I felt my concerns were being taken seriously, a plan made to set up oxygen cylinders in our home, along with smaller, portable canisters so we weren’t housebound. With this in place, I felt far more relaxed about entering the next chapter of Matilda’s journey.

In preparation for leaving NICU, John and I moved into a transitional care room with Matilda. It was crazy to think she’d been in our lives for over three months and this was the first time she’d slept beside us. Not that I slept much – I must have checked that she was still breathing at ten-minute intervals throughout the entire night! She was now 6lb 4oz, and John and I realised we’d gained the equivalent weight of four Matilda’s between us thanks to subsisting on nothing but microwave “ping” food for over 100 days! On 30th July, one day after Matilda’s due date, we walked (well, waddled) through the doors of the neonatal for the millionth time, the difference being that we were now carrying our daughter! It was the moment we’d dreamt of for aeons, which had seemed intangible for so long. That evening, as Matilda lay contentedly beside me in her Moses basket, everything felt wholly right.

I’d been warned about the first few delirious weeks of sleep deprivation, but as luck would have it, Matilda’s homecoming coincided with John breaking up for the summer holidays, meaning we had five weeks together as a family and I had support with night feeds. Matilda, or “Machillda” as we called her, was a chilled out soul – she only cried when hungry, was happy to be held by anyone, didn’t mind being put down and was entirely unfazed by noise. Compared to the psychologically gruelling and emotionally draining atmosphere of the NICU, this was the easy part.

One month after Matilda’s discharge, she received the all-clear (no pun intended) that her ROP was in remission and her surgery was a resounding success. Her eyes, which once stared into space, began tracking our movements and lighting up when we approached, her smiles mirroring ours. Shortly afterward, Matilda passed her oxygen study, meaning she was finally rid of the nasal cannula with its sticky pads that irritated her skin and John and I were free of the cumbrous oxygen cylinders with their leads that were forever getting caught on our furniture and weighed a ton when we were out and about. The simple pleasure of a stroll in the park without a cylinder strapped to my back is one I will never take for granted again.

Everything was going swimmingly, which of course meant that once again the bubble was going to burst. Matilda was booked in for an auditory brainstem response (ABR) test after failing her newborn hearing screening in NICU. Informed that oxygen frequently interfered with the readings, we weren’t overly concerned. “Of course she can hear,” John said. “She responds to our voices.” But when the audiologist played sounds at various volumes and frequencies, the electrodes placed on Matilda’s head recorded zero activity. A diagnosis of Auditory Neuropathy Spectrum Disorder (ANSD) followed – due to her prematurity, her auditory nerve hadn’t developed sufficiently to transmit sound from her cochlea to her brain. When Matilda was classified as profoundly deaf I felt as though I’d been repeatedly run over by a truck. After everything we’d endured, why must we face another battle? I was devastated for her, envisaging a future of isolation and disadvantage. I was also devastated for myself – as a musician, sound elevates me above all other senses, music forming such an integral part of my core being, making me feel truly alive. I thought of all the times I’d played her Matilda by Alt-J, a song John and I love, which inspired her name – I could have sworn her ears had pricked up, that she’d recognised the melody that I’d sung to her in the womb. I recalled the hours I’d spent sat by her incubator, truly believing that my voice was soothing her. Nothing felt real anymore.

Matilda was fitted with hearing aids, but they created more problems than they solved. She clearly preferred them in her mouth to her ears and we couldn’t take our eyes off her for a millisecond for fear that she would choke. We tried custom made hearing aid headbands and even wig tape to keep them in place, but she yanked these off too. She outgrew her ear molds on a weekly basis and because the aids were set to such a high level they would feed back at an excruciating volume whenever the fit wasn’t snug. We were forever at the Evoked Potentials clinic getting new impressions made, a process which involved piping a pungent blue putty into Matilda’s ears and trying to stop her writhing until it set – this certainly proved there was nothing wrong with her vocal cords! Matilda was too young for conclusive testing, but to my mind, the hearing aids made no palpable difference. I began learning sign supported English and meeting weekly with a teacher of the deaf, trying to reassure myself that time would reveal the bigger picture.

In the meantime, we tried to live as normal and active a life as possible. I said yes to every baby group going – massage, yoga, sensory, messy play, sing and sign … witnessing the unadulterated delight Matilda gained from these activities filled my heart with sheer joy. Matilda loved spending time with other babies and I forged new friendships too. To this day we still socialise regularly with families we met on NICU and on the “other side” like myself and the other mums of preemies jokingly refer to life beyond the unit. We paced the same hospital corridors for months on end, we know how each other feel without uttering a word – when you experience something so life-changing, teetering on the brink of life-shattering, it consumes you and the prospect of the outside world can seem like another dimension. Together, we branched out and have formed bonds that I have no doubt will last a lifetime.

The months rolled on and John and I celebrated Matilda’s first Christmas and first birthday. Her neonatal consultant had warned us that she was at high risk of catching bronchiolitis over the winter, which would likely require hospital readmission, but to our immense relief and surprise her immune system stayed strong – she didn’t catch so much as a sniffle. She cut her first teeth and mastered rolling, sitting, weaning, crawling, waving, clapping, standing and cruising. Against all odds, she even appeared to be developing some degree of hearing! She still wouldn’t tolerate the aids, but even without them, she would react to squeaky toys, jump at sudden noises, turn to her name and take her turn babbling in conversation. It was then that I learned about delayed myelination – myelin lubricates the auditory nerve, aiding the transmission of sound from the cochlea to the brain. Could Matilda be one of the tiny fraction of premature babies experiencing delayed myelin maturation, her senses slowly but surely awakening? The audiologists couldn’t be sure. ANSD is a rare, complex and frequently intermittent type of hearing loss, so further ABR testing would likely be inconclusive. It was possible that Matilda’s initial ABR misdiagnosed the severity of her deafness, but she needed to undergo behavioural hearing tests to prove or disprove this theory. Unsurprisingly due to her age, she lacked the concentration span to sit still and engage for long enough to get conclusive readings. I sensed that some of the audiologists perceived my conviction that she had improved as wishful thinking. This was incredibly frustrating, especially when all I could do was play the waiting game.

Besides the conundrum of her ANSD, we’d run the prematurity gauntlet and overcome all the obstacles, right? Wrong. In May 2019 I took Matilda to an ultrasound scan to ensure her kidneys were back to normal after the acute injury she sustained in NICU. As the sonographer’s brow furrowed and she mumbled something about getting a second opinion, I felt an anxious twist in my gut. As the consultant described kidneys shrivelled to half their expected size, anomalous in both shape and brightness, I realised they were far from normal. Before I had time to ask any questions, let alone dress Matilda, we were herded out of the scan room to make an appointment with a nephrologist. Still in just her nappy, Matilda peered at me with unsuspecting, innocent eyes. I don’t think I’ve ever held her so tightly, trying with all my might not to explode with tears as people shoved past me in the bustling hospital corridor.

It’s now six months since Matilda was diagnosed with chronic kidney disease. Without wishing to dwell on the negative, the disjointed care we have received has been almost as challenging as the condition itself. At almost 19 months old, Matilda weighs just 14b 8oz, the same as an average 4-month-old. We’ve been told that her kidney failure is inhibiting her growth hormones, yet another consultant contradicts this, insisting that at 33% her kidney function isn’t poor enough to stunt her development. Depending on who we ask at any given appointment, her size is down to genetics, prematurity or the fact she expends all her energy frenetically moving about, leaving none to grow One consultant assured us that the worst Matilda might face in the future is high blood pressure, while another casually dropped the bombs “dialysis” and “kidney transplant” into conversation, seemingly oblivious that this was fresh information. One thing I know for sure is that diet plays a huge part in keeping the ticking timebomb that is kidney disease at bay, specifically cutting out sodium, potassium, and phosphates. Staple foods such as potatoes, bananas, and tomatoes are off the menu – in fact, 90% of her diet has been overhauled. Matilda has wholeheartedly resisted all changes, mealtimes and messy play swiftly merging into the same activity. Restricting her diet while trying to encourage weight gain has felt exasperatingly counterproductive and it’s only since the recent introduction of a high protein and calorie milk that we feel like we’re turning a corner.

This October brought a long-awaited breakthrough regarding Matilda’s ANSD. After countless inconclusive tests, the audiologists finally recorded some meaningful readings which confirmed what I had suspected for so long – SHE CAN HEAR!!! At higher pitches, she perceives sound at an almost normal level, whereas at lower pitches, the loss currently stands at a moderate level. Encouragingly, she can differentiate between a variety of speech sounds, which is not always a given with ANSD which produces distortion and can muffle even loud noises. I’ll never forget the day an audiologist declared that Matilda wouldn’t develop speech without significant intervention – in response, she stood up, yanked his trouser leg and announced, “hiya!” not once, but twice. This rendered him the speechless one! Now her hearing aids are calibrated to the correct levels, she doesn’t scream blue murder every time she has to wear them. We’re still lucky to achieve 20 minutes’ use per day, but immersing her concentration in her favourite programme Boohbah certainly helps. In addition to “hiya” she now says: “hey”, “yeah”, and “D-day” although the last once might be a coincidence 🤔. She can sign “milk”, “more” and “no” and gets so excited to hear her daddy’s voice on speakerphone when he calls from work during his break. It brings me immeasurable joy to share my passion for music with Matilda – she is more receptive to it than I had ever dared hope, clapping and thumping along to the beat, her mood shifting as I switch genres, her expression morphing with curiosity and delight as I play my violin to her.

There’s no mistaking my little girl with her big personality. Her unquenchable thirst for living shines through, lighting up every room she enters. She has taught me the true meaning of resilience, patience and courage. Matilda holds her own, defined by her enduring spirit far more than the battles she has fought to overcome.

As Mum to a wriggling, rambunctious toddler it’s rare to find time to reflect, but what better time to share our family’s story? Today, of course, is World Prematurity Day, exactly two years since I took that positive pregnancy test. Tomorrow, Matilda and I will return to the neonatal unit where she spent her first 107 days. Mercifully, she doesn’t remember a moment of her NICU journey, but the doctors and nurses who saved her life certainly remember her and I grasp every opportunity I can to update them on her progress, including her latest milestone – yesterday she took her first steps!!

It’s the little things that spark memories of NICU for me – the scent of pears, now forever synonymous with the shower gel I used in the patient hotel. The same three songs on incessant repeat as the radio blared in the milk expressing room. Even now, when my phone rings unexpectedly my heart flies into my mouth, expecting one of the many 4am calls I received urging me to come to Matilda’s bedside immediately … only for me to realise she is safe in my arms, beaming and trying to stick her finger up my nose.

I’m still no closer to finding out why Matilda was born 14 weeks early – she was in good health, as was I. No one ever thinks something so incomprehensible will happen to them until it does. The unvarnished reality of extreme prematurity is tough – it’s not always sugar-coated miracles and happy endings. I think of the parents whose stories ended before they scarcely began, for their babies who never came home, or felt a gentle breeze against their cheek. Matilda is one of the fortunate ones and whatever challenges we face in the ensuing chapters of her life, I’ve no doubt she has the grit and determination to tackle them with her typical fearless aplomb.