On Monday 30th November at our Westminster Reception, Sarah Miles, mum to Eva and Charlotte, spoke bravely about their journey through neonatal care. Her words were powerful and moving and captured the reasons why parents of babies born too soon need more time.
Sarah shares her words with us here….
The Smallest Things reception – Eva & Charlotte’s story
“Hello. I’m here as a supporter of the campaign to extend maternity leave and as a mum. And probably the best way to explain why I’m supporting this campaign is to tell you the story of two VERY little girls.
In 2011 I found out I was pregnant. It wasn’t a surprise because, like most things in my life, it was carefully planned. Working in the media there’s not a great deal of job security and I’d strategically manoeuvred myself into a permanent role after years of freelancing in order to get some paid maternity leave and – most importantly for me – a job to return to.
Yet life doesn’t always follow your best-laid plans, as many of us in this room can attest. At our 12-week scan we were speechless yet delighted to find out we were expecting identical twins. And, with the benefit of hindsight, naive to all the issues this can bring. We were scanned fortnightly and at 22 weeks were told I had too much amniotic fluid. At 25 weeks I had bleeding and was admitted for 10 days’ observation. At 28 weeks, the day before I was due to have amnio drainage and 12 weeks early, my waters broke and I gave birth to two beautiful girls by emergency c-section. Eva weighed 980g (2lb 2oz) and Charlotte tipped the scales at 1.1kg (2lb 8oz). They cried as they emerged – a good sign – but neither could breathe by themselves, let alone feed orally, maintain their own body temperatures or fight off infection and they were resuscitated before being whisked away in incubators to the neonatal unit seconds after delivery.
And so began our adventure through NICU. While in recovery, we were told that Eva had a condition called TOF/OA – trachea-oesophageal fistula/oesophageal atresia – which basically meant her mouth wasn’t connected to her stomach and she couldn’t swallow. Suddenly my excess amniotic fluid made sense. And life-threateningly, her oesophagus was connected to her trachea so fluid could enter her lungs. She was transferred from Queen Charlotte’s Hospital in Hammersmith to Chelsea & Westminster Hospital for immediate surgery, while I stayed behind with Charlotte in NICU for five excruciating days. Eva was given a 50/50 chance of surviving the operation. That was the first – and certainly not the last – time I begged, pleaded and bargained with the universe to let her survive. There’s a lot of that in neonatal units: willing, wishing and wanting your baby to make it, yet having no power to affect the outcome. It’s torturous.
But she made it. And on day 5 Charlotte was transferred to the same hospital – but never the same ward – to make our lives just about bearable. Expressing eight times a day, reading medical papers, hanging around in corridors for separate ward rounds (and hoping the two didn’t coincide), sitting by incubators, watching numbers on screens, reading obs charts, listening to bleeping machinery….. all this quickly became our normal daily routine. Learning to change a nappy through the portholes of an incubator, gingerly holding twig-like legs up without disturbing wires…. we learnt how to do our babies’ “cares” in a way that was far from normal. It was two weeks before I could have my first precious cuddle with Eva, and even then I was terrified and spent the whole time staring at the numbers on the monitor. How could this tiny baby the size of her daddy’s hand survive and grow?
Within a week my partner was back at work and this new routine was one I did alone. Dashing between intensive care, high-dependency and the expressing room – experiencing the highs of a wonderful cuddles and the lows of infections, blood transfusions, cannulas and backwards steps to ventilation. For most new mums, the sound of their baby crying is cause for concern, for NICU mums it’s a sign of positivity – growing lungs, healthy reactions. With your baby in a plastic box, or as somebody wonderfully called it “a womb with a view”, you’re denied the simple pleasures of new parenthood. Picking your baby up, changing their nappy, feeding them when they’re hungry – all of these things are done to a schedule dictated by a doctor and implemented by a nurse who you have to ask permission from. You’re robbed of those precious new first experiences while in a constant state of fear your baby might die. I was desperate to hold my girls but terrified it might hurt them or cause distress. ‘It doesn’t matter,’ you tell yourself, ‘As long as they get better and grow. They’ll come home and then we will start properly. Like it should have been. This is just a nightmare to get through and then we can start again at the beginning.’
When Charlotte and Eva were allowed to start wearing clothes, it was another baby step towards ‘normality’. Us NICU mums crave normality – we’d roll our eyes and hold our noses at explosive pooey nappies and yet ANOTHER outfit change yet inwardly delight and revel in it. This is what normal newborns do! We’re getting closer. And when Charlotte was moved from an incubator to an open cot I was literally walking on air. ‘You mean I can just lean over and touch her? Without asking?’ While in the next room Eva was being put on yet more antibiotics for a suspected bowel infection and I wasn’t allowed to touch her because she was too unstable. Being told you can’t touch your baby is one of the worst things you can say to a parent. But of course you want what’s best, and if that means depriving yourself of bonding hugs, then so be it.
It was the nurses and other mums on the unit that got me through the day-to-day of NICU life. We called Eva and Charlotte’s nurses her ‘aunties’ (as none of their real aunties were able to visit) and the friendships I made with the other mums will last a lifetime. We supported each other through bad times and celebrated the good times – the baby steps forwards – and when it was finally time for a baby to go home we would all celebrate. While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines. Put simply: normal mums worry about their baby sleeping through the night, NICU mums worry about their baby surviving the night.
After 79 long days, 5 days before my due date, Charlotte finally came home, weighing 2.6kg (5lbs 5oz) and behaving pretty much like a newborn. But at the same time Eva was struggling to recover from a failed operation to fix her oesophagus. Ecstasy and agony simultaneously. Despite having one daughter at home my life got harder, rather than easier because infection policy dictated that I couldn’t bring Charlotte back onto the unit. So I was forced to leave my fragile ‘newborn’ baby every day, who I had worked so hard to breastfeed, to visit my arguably more fragile baby in hospital. It was unbearable. I hired a nanny to look after Charlotte, my mum helped out and my partner Dave swapped his working Friday for a working Saturday so that friends could take over. Dave took one week of paternity leave when Charlotte came home and one week of holiday. Because we had to divide ourselves between home and hospital we rarely saw each other and when we did we were too exhausted to communicate. There were no shared joys of our new babies – just handovers of information.
Eva needed to reach a certain weight before they’d operate again so we were in it for the long-haul. But she was thriving and her smile when I arrived every day made it all worthwhile. She loved watching the jungle animals rotate on her mobile and listening to music from toys. Along with the nurses we devised a daily routine that included sitting up in her bouncy chair watching what was going on.
In total Eva was in hospital for 197 days before she came home to die, having suffered brain damage during her final operation. She died on 23 February, Day 201, aged six and a half months. Her hospital stay had been one day longer than my pregnancy.
I don’t have the words to describe the time that followed, apart from to say that Charlotte gave me a reason to keep going. She was, and still is, my salvation.
Three and a bit months later my boss took me out for dinner and asked if I was planning to return in August, when my year’s maternity was up. I’d had six weeks of 90percent pay and then statutory pay until nine months. I knew I wasn’t emotionally ready so I asked for more time – unpaid leave – but they said no and sent me a letter to sign saying I was resigning. As I signed that letter part of me knew that I was signing away the career I’d spent 15 years working hard to build up.
A couple of months later my partner Dave was made redundant. We knew we were going to have to do some significant belt-tightening to live on one salary but to live on nothing? So I accepted a month’s project work at my old company for around £20K per year less than the job I’d just resigned from. Thankfully he found another job and I didn’t stay on. When Charlotte was 18 months old I started doing a little bit of self-employed freelance work from home while she went to nursery two mornings a week. Well I say, every week but I’d guess she was off about half the time with chest infections so I wasn’t able to commit to much work.
Fast forward through my second pregnancy (which I wish I could) – this time a full-term healthy girl called Iris – and self-employed mat leave to today, and I’m still sporadically freelancing from home, which doesn’t really work with childcare commitments and school runs. So I’m looking for a part-time permanent job but having no luck. Part-time editors are few and far between, and often are only those that have negotiated hours when they returned from maternity leave. Something I was very aware of before I got pregnant. But as I said before, the best-laid plans don’t always pan out…
If I’d have had more time after Charlotte came home and Eva died, I might have felt strong enough to negotiate a return to work on my terms and not be in this position four years later. But because I felt I had no choice but to resign, here I am. And while we’re by no means queuing at the food bank just yet, it has had a huge effect on our family and so far has prevented us from buying our first home together.
Time spent in NICU is simply not maternity leave. It’s a nightmarish version of ‘what should have been’ where doctors are trying to replicate the conditions of your womb because your baby or babies should still be in there. Every year, we celebrate Charlotte’s Homecoming Day – 79 days after my twins were born and five days before they were due, because this is the day she truly became ‘ours’. The first day we looked after her independently, the first day she slept in her own moses basket, the first day she was breastfed on our sofa, the first day her nappy was changed on her changing mat. It was, in many ways, the day she was born. Yet it was three months after my maternity leave had started and three months before her sister would leave the hospital. And that’s simply not fair.”