Assembly urged to help parents of premature babies make ends meet during time their tots are fighting for life in hospital
The mother of premature twin girls has spoken of the need for better financial support for struggling parents with seriously ill babies in neo-natal care in Northern Ireland.
Christina and Stephen Shiels faced travelling from Ballymoney to Belfast and back home every day for weeks to be by the bedside of their baby girls Chloe and Taylor after they were born at just 25 weeks.
"Chloe weighed 1lb 6oz and Taylor was 1lb 9oz. They were born in Altnagelvin but had to be transferred to the Royal in Belfast.
"The first few weeks you have so much going on in your mind you don't really think about finances, but we spent £160 a week from Ballymoney to Belfast and back every day.
"That was for petrol and the cost of having to eat in the unit. We were living out of vending machines and canteens." Christina was speaking after a report by NI charity TinyLife and Bliss, the UK special care baby charity, revealed parents of premature babies face extra financial costs of more than £220 a week.
Overall, couples could end up paying more than £1,300 across the duration of their child's stay in hospital for parking, food, childcare costs and loss of earnings.
There are almost 2,000 babies born prematurely here every year.
"A lot of the time I had to try and travel with family, sometimes I would take the train or try and get a lift with people who were working in Belfast," Christina said.
"We had money set aside for the girls for cots and had to eat into that which was for them.
"If there was accommodation or food vouchers for parents it would make such a difference and let them focus on the babies."
The twin girls turned one on October 27.
The findings, based on the experiences of 192 parents, showed that 91% felt that their finances worsened as a result of having a baby in neo-natal care.
Worryingly, some families resorted to payday loans to make ends meet.
The charities made recommendations to the Assembly including parents being offered free accommodation, as well as meal vouchers or free hospital meals.
TinyLife chief executive Alison McNulty said: "The findings from the report are staggering for Northern Ireland families.
"At a time when parents are already worrying about the health and survival of their baby, they are faced with spiralling costs which is causing them additional unnecessary stress."
Total average extra costs to parents of having a baby in neo-natal care - £229 per week or £1,374 (duration of baby's stay)
Food and drink costs £65 per week
43% of parents reported that travel costs affected their ability to visit their baby in hospital
91% of parents reported that their family finances were worse as a result
One in five said it affected their ability to pay household bills, and a further one in 10 said it affected their ability to pay the rent or mortgage
TinyLife and Bliss charities now recommend that parents are able to access free accommodation and provided with either meals or meal vouchers