Catriona Ogilvy was getting out of bed on a summer morning when, 30 weeks pregnant, her water suddenly broke. There had been no signs her first son would come prematurely but within a few hours, Samuel was born, resuscitated for six minutes and taken to the neonatal care unit. The first time Catriona saw him, he was in an incubator attached to a life support machine and a ventilator that helped him breathe.
She was told that while Samuel was fine, he’d have to remain in hospital until around his due date – 10 weeks away. But when she phoned her work to let them know, she discovered her maternity leave had already been started. "Hang on," she thought, "I’ve just been told I’ll be in hospital for two and a half months, how can that count as leave?"
Fast-forward seven years, and Catriona has just dropped her second son Jack off at school and has just enough time to tell me her story over a cappuccino before she has to take Samuel to a medical appointment. "When Samuel was born [so early], it was a huge shock," she says.
The 37-year-old had been working as an occupational therapist on a neonatal intensive care unit, but her experience couldn’t prepare her for what it meant to see her newborn taken straight away from her, and what it felt like to awkwardly touch him through the wires that kept him alive.
"I spent eight weeks in hospital, then within a few months, it was time to go back to work. I really wasn’t ready.
"I spent eight weeks in hospital before being discharged, then within a few months it was time to go back to work," she says. "And I really wasn’t ready."
Catriona’s story is as upsetting as it is common. According to Bliss, a charity for babies born premature or sick, there are around 60,000 premature births every year in the UK. While these babies often face a range of medical issues that require long stays in neonatal care, the current one-size-fits-all parental leave system doesn’t grant extra time off to their parents. Mothers are often shocked to discover their 52 weeks of leave have kicked in right away, eating into the time they’ll spend at home with their newborn.
This time is then often cut further due to the baby’s ongoing medical needs, explains Bliss spokesperson Josie Anderson. "Babies who spend a long time in hospital might take medications regularly and go to a lot of appointments," she says. "That can have a big impact on parents' leave.
"Mums have used up a lot of their leave by the time they come home and, once they do, a lot of what’s left is spent trying to manage the care of their babies and taking them to appointments rather than adjusting to the new environment. It’s really important that parents are supported to be with their babies, and I definitely feel that the current parental leave system doesn’t meet their needs."
Without the support of the fathers, who often use their two weeks of paternity leave when their baby is still in hospital, mothers are left alone to care for their newborn at home and are forced to settle into a normality that visitors and other mothers at mums-and-babies groups fail to understand.
According to Bliss, about 80% of parents of premature babies find their mental health becomes worse following their baby’s stay in neonatal care. Cathy Kamara is one of them. After her daughter was born two months early in 2014, she suffered from postnatal depression for half a year. "I think it was due to the fact that nothing had happened the way we planned," says the 32-year-old from Hertfordshire. "I didn’t get to hold my baby for the first week. Having visiting restrictions on her and not being able to do things I would do in the comfort of my own home, not being able to change her nappy or feed her without people checking – it was a very difficult way to start being a mum."
But her mental health and her baby’s wellbeing weren’t her only concerns. "We had a massive financial problem," she says. "Although I was put on maternity benefits, the hospital where my daughter was born was very far away as the one in our town didn’t have neonatal facilities.
"My daughter was there for seven and a half weeks and we didn’t drive. I was out of the house all day and I had to buy lunch, I had to buy different things – it got expensive. There was a point where my parents, who lived halfway across the country, had to come live with me and drive me every day."
Financial worries are a huge issue for parents of premature babies, explains Catriona. "People wonder why parents don’t ask for extended unpaid leave, but not many families can afford to do that," she says. "Many can’t even take the full 52 weeks off."
In 2014, Catriona set up The Smallest Things charity to support families with premature babies. They launched a campaign asking for extended leave and increased financial support. What started as a blog to raise awareness turned into a petition that now boasts more than 240,000 signatures on change.org.
The increasing visibility of the campaign is already having an effect, with some employers, including Sony Music UK, Croydon, Southwark and Waltham Forest Councils giving extra leave to staff who have babies born prematurely. At the beginning of October, the Mayor of London announced plans to take similar steps at City Hall, and called for employers across the country to follow his lead.
Cllr Stephanie Cryan of Southwark Council is among those in support of the change. "Every time we have a child is a very stressful time, but the stress increases when you have one born prematurely," she says. "Babies are in the hospital, parents need to be there all the time."
This September, Southwark Council became one of the first employers to sign up to the Best Employer Charter, a code of practice for employers put forward by The Smallest Things which calls for an extension of paid leave for mothers of premature children by the number of days a baby was born prior to their due date.
"It really makes sense that we need to support our workers," says Cllr Cryan, "and if they are in that situation, to enable them to focus on what really matters, which is their baby and their family."
While these developments make campaigners hopeful that other employers will follow these steps, they know systematic change won’t happen without changes in legislation.
"It’s really encouraging to see some policies addressing the issue of providing extra rights for parents with premature babies," says Katie Wood, senior legal officer at Maternity Action, a charity dedicated to the wellbeing of pregnant women. "But not all employers can afford to provide enhanced pay and conditions. For the smaller businesses, we need to have changes to regulations."
Back in the coffee shop, Catriona remains hopeful. She knows change won’t happen fast, but she hopes it won’t take too long, either. "The government have said clearly to us that they haven’t ruled out future changes in legislation," she says. In the meantime, she keeps campaigning.
"When I worked in intensive care I had no idea that, for the mums sitting beside incubators, that was their maternity leave. When not even the people who work on the unit really understand that, then why should the wider world?
"First it’s about shining a light, then it’s about making that change."