A family has backed calls for legislation to support families of premature children after they forked out £900 on petrol travelling back and forth to visit their baby girl as she fought for her life.
For six weeks, Liam and his wife were making daily car journeys from Irvine in Ayrshire to the Queen Elizabeth University Hospital (QUEH) in Glasgow to be with their daughter. The tot was born 15 weeks early on July 30 and weighed just 1.4lbs, roughly the same as a loaf of bread.
The couple were told by medics she only only had a 45% chance of survival.
While the child was kept in the neonatal intensive care unit at the QUEH, her parents were plunged into a period of uncertainty and ended up spending almost four figures on fuel so they could be by her side every day.
Recounting the 'terrifying' experience, Liam, 32, told the Record: "It has been the most terrifying experience of my life. I was a firefighter and it was the scariest thing that has ever happened to me.
"You're always worried that you will get a phone call before you've even left the house that something has happened and that you need to get up there. Then, you're traveling for an hour or sometimes more depending on the traffic just to get there.
"If something was to happen, we both couldn't have traveled at the same time because one of us would have had to stay at home to look after our toddler. Until people live it, they won't understand the amount of stress that is involved. It's like living in constant fear for months on end."
Things took a turn for the better last week as the youngster began to show signs of improvement. She has now been moved to Crosshouse Hospital in nearby Kilmarnock, meaning it's easier for her parents to make regular visits.
But they are still counting the costs of the trips to Glasgow and, even though a fraction of their fuel was subsided from the Young Patients Family Fund, Liam admits it didn't scratch the surface. The desperate situation even led the pair to launch an online fundraiser for financial help, which would allow them to see their daughter every day.
Liam said: "At the time, it was £2 per litre for petrol. We had to pay for most of the fuel so we had to ask for a bit of help with the fundraiser. It added another level of just constant stress, we have been absolutely petrified most of the time. It has been a period full of worry for us."
The dad-of-two has stressed that while neonatal facilities in urban areas of Scotland remain 'scarce', the Neonatal Care Bill (Leave and Pay) will help to provide financial relief to families who need to travel to see their premature babies. The proposed bill, put forward by Scottish MP Stuart C McDonald, will give parents an additional 12 weeks of paid leave while their newborns are in hospital.
Liam said: "The facilities at the QUEH and the staff were amazing, everybody was supportive. But, in comparison to Europe, there are not enough facilities across the UK so that's why people are having to travel for treatment.
"The neonatal services in Scotland are scarce and that is why we had to travel. The Neonatal Care Bill is going to be a huge help to everybody who is going through the same thing my family went through.
"It's long overdue and it's a huge step - it will help people who just want to be with their families to be together during such a time of immense stress."
SNP MP Stuart McDonald said: "The bill I’ve been taking through Parliament will compliment that fund by providing for up to 12 weeks neonatal care leave and pay. No parent should have to choose between being with their premature or sick baby in neonatal care and having to go back to work simply in order to make ends meet.
“The bill will ensure parents have support to spend more time providing hands-on care to their babies, benefiting both parents and children. I’m pleased to have cross-party support for the bill – and we want to see this passed by Parliament and implemented by the UK government as quickly as possible”.
Any additional donations to the couple's fundraiser will be put to the Glasgow Children's Hospital Charity.
A Scottish Government spokesperson said: “The Scottish Government supports parents visiting their babies and children in hospital.
"The Young Patients Family Fund (YPFF), launched in 2021 and delivered through Health Boards, allows parents, carers and siblings (aged under 18) to reclaim associated costs including travel and meals.
"Accommodation can also be provided depending on individual circumstances.
“In 2021/22 we provided over £1.8m to eligible families under the YPFF.”
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