The only thing my partner and I were thinking about as we sat by the side of our newborn baby’s ventilator last November was whether our daughter was going to survive. Complicated-looking machines beeped around her in the neonatal ward of Great Ormond Street Hospital in London as we delicately moved wires and tubes to hold her tiny hands. Suddenly, the outside world – and in it both of our jobs - belonged to another life.
Most parents don’t expect to end up in neonatal care with their baby, and after a low-risk pregnancy I certainly imagined my first few weeks of maternity leave to be spent in the typical newborn bubble of sleepless nights and streams of visitors. Instead, our daughter Lucca aspirated meconium in the womb after I was induced. Her lung collapsed and she couldn’t get enough oxygen into her organs. After she was born by emergency caesarean, she was whisked off by doctors before I could see her or hold her and blue-lighted across London to a hospital with a specialist life support machine. We spent the next six weeks in various neonatal intensive care wards across three hospitals, in shock and in nauseating pain as we tried to make sense of what was happening.
Our days were spent by Lucca’s side, stroking her hair and longing to pick her up and hold her for the first time as she lay there heavily sedated. The last thing on our minds was that my maternity leave, and more imminently my partner Adrian’s paternity leave, was ticking away. Currently, these entitlements start the moment a baby is born, whether they’re healthy or sick. There is nothing in place to help parents with babies in neonatal care so they don’t have to eat into their leave to be by their baby’s side, or worse, return to work or take unpaid time off.
But finally, there’s hope things are changing. Last month, the Government announced a new law they are backing that will see parents in this situation receive an additional 12 weeks of paid leave, on top of parental leave. The Neonatal Care (Leave and Pay) Bill will mean normal leave allowances won’t kick in for three months, if a child is in hospital that long. Once in law, any parent with a baby that spends more than seven days in hospital in the first 28 days of their life will have access to it. The Government intend for it to be the same as other statutory parental leave payments, which are £156.66 a week or 90% of the employee’s average wages (whatever is lower).
It’s brilliant to see recognition of the impossible situations some parents face, but an allowance like this should have been brought in long ago. This is a huge problem for parents. Every year, over 90,000 babies are born needing neonatal care in the UK, either because they were premature (before 37 weeks of pregnancy) or full-term but sick. Many babies will spend weeks or months in hospital before they can go home, according to Bliss, the leading UK charity for babies born premature or sick, who have been campaigning for this law for years.
Bliss Chief Executive Caroline Lee-Davey says there is still more to do to continue the Bill’s passage through Parliament. If it does pass through smoothly, it will likely come into effect in 2024. ‘We know how much this entitlement will mean to families, and the difference it will make to babies. We are now one step closer to giving many parents the much-needed time to be where they need to be - by their baby’s side in hospital,’ she says.
Incredibly, by week six for us, Lucca had made a full recovery and we were able to bring her home. But that coincided with Adrian’s first day back at work. His two weeks of paternity leave had run out and he had exhausted his annual leave. He was granted a week’s compassionate leave and then that was it. His first week back was our second with a newborn at home. After the start we had, I wasn’t exactly up to the job on my own.
And we were lucky. In hospital, we met dozens of parents struggling to juggle work while their baby was still in neonatal care, sometimes in a critical condition. It can be hard to remember to eat when you’re going through a trauma like this, let alone think straight for long enough to do your job. Susie Young, 41, a mother we met at Homerton hospital, was cramming her freelance marketing and PR work into evenings after spending all day with her baby Calum in intensive care, who was born three months premature. He spent nearly 16 weeks in hospital.
Her husband, also called Adrian, had returned to his job in advertising three weeks after Calum was born, when his leave ran out. When we met them, they were tag teaming: Adrian would come in to see Calum in the evenings after a day at work, and Susie would go home and do as much as she could manage after a long day in hospital. This was because her self-employed statutory maternity allowance had to start on the delivery date and end nine months later, but Susie knew she wouldn’t be in a position to work by the time it ran out.
‘I needed to bank some work,’ she says. ‘In order to align my nine months to Calum’s original due date, I couldn’t financially take a year off freelancing so I decided to cram work into late evenings. It was exhausting and I probably shouldn’t have done it because when we got him home in January I was already knackered, and that’s the time he was handed over to us for full care and I was operating on absolute empty.’
It would have been reassuring for them to know the neonatal allowance was covering them during Calum’s time in hospital. Worse still, we met a single mother who lived outside London and had another child at home to care for, presumably by other relatives. Her baby had been in neonatal care for months at Great Ormond Street. It’s hard to contemplate how parents in these situations cope.
‘To have had Adrian at hospital with me more would have been incredible for both our mental healths,’ Susie adds. ‘It’s such a traumatic experience and if you have a partner you desperately need those long hugs in the hospital corridor and a shoulder to soak. Life for Adrian had to quickly return to a normal working pattern, while actual life was anything but normal with a baby in intensive care on a ventilator weighing 765g.’
In fact, when the Bill does go through, it won’t actually help people like Susie since it doesn’t apply to the self-employed, who under the current system receive a statutory maternity pay of £156 a week for nine months. A spokesperson from the Department of Business, Energy and Industrial Strategy (BEIS) says: ‘People who are self-employed can decide when they should work and do not have the pressure of having to ask an employer for time off.’
But Susie’s appalled. ‘They’re dividing people and support that way when we’re all faced with the same earth-shattering experience,’ she says. ‘I’m gutted for self-employed people who will go without this support when it’s introduced. They’re agreeing there’s a wrong that needs to be made right, but not for everyone.’
Once in law, it will at least be a huge step forward for some. But I feel for the tens of thousands of parents who will continue to suffer until it is implemented. With the cost of living soaring, affordable childcare a fantasy, women terminating pregnancies because of childcare costs, and a threat to maternity leave and pay already pervasive, it’s more urgent than ever that the Government supports parents and hurries this through.
For us, it would have meant my maternity leave was able to start when Lucca left hospital. We’d have been able to enjoy the five weeks Adrian had saved up, at home as a family before he returned to work. Of course, nothing could ever compensate for watching your baby fighting for life, but a law like this will go some way to ease the additional stress that goes with these awful circumstances and recognise that not all births are equal.