Born weighing 1lb at 23 weeks: The very real costs of having a premature baby

The families of premature babies face being pushed into poverty or missing out on time with their sick children amid the rising cost of living.

On average, parents are paying an extra £405 per week while their baby is in hospital, according to a survey of 1,928 people.

For many, it is a double-edged sword – the extra expenses come at a time when their household income has dropped, with statutory maternity pay of £156.66 per week (or 90% of average weekly earnings – whichever is lower).

One in seven babies born in the UK is admitted to a neonatal unit, according to Bliss – a charity for sick and premature babies.

While the majority are born full term (and on average spend a week receiving care), the families of the sickest babies face an agonising hospital stay – and a hefty bill at the end of it, exacerbated by the cost of living crisis.

Born weighing just 535g

Lauren Ormston’s pregnancy had been progressing normally when she suddenly went into labour at six months.

Baby Isla was given survival odds of 40% and was born weighing 1lb 2oz (535g) at 23 weeks. This would not even be her lowest weight – a few days later, it dropped to just 15oz (430g).

Lauren, 27, was allowed to cuddle her daughter for six minutes alongside her fiance Oliver Dewey, 31, before Isla was moved to the neonatal unit and ventilated.

She had a bleed on her brain, a hole in her heart and kidney failure.

“The doctor just told us to take each hour as it comes,” Lauren told Sky News.

“I was devastated, I didn’t know what to say, think or do. Because I had just brought this little human into the world and now she was having to fight for her life. It wasn’t fair on her.”

130 days of travel

Isla spent 130 days in neonatal units at Ashford and St Peter’s Hospital in Surrey and Frimley Park Hospital in Camberley, and Lauren visited her every single day.

“There was not one day when I didn’t see her,” she said.

At St Peter’s Hospital, it was an 80-minute round trip – when Isla moved back to Frimley Park this was halved – although the family had to pay parking costs of £20 a week.

At one point, Isla was rushed to Great Ormond Street hospital for surgery on her eye, but Oliver was not allowed to stay on the ward, so had to pay £400 for a hotel for two nights to be near his daughter.

The hospital was unable to save the sight in Isla’s right eye – and the stay at Great Ormond cost the family £600.

Like many other parents surveyed by Bliss, travel was the biggest cost and Lauren spent around £150 a week on fuel. A tyre puncture en route one day added an extra £300.

Bliss said parents who are able to drive to the hospital spend £101 a week on average, while those who have to rely on public transport spend £119.

Despite spending more on travel, parents using public transport to see their babies are more likely to be in lower income brackets.

The unaffordable cost of travelling to and from the neonatal unit had a tangible impact on how involved parents can be in their baby’s care.

Some 84% of those who used public transport said that stopped them from being as involved as they wanted to be.

Expensive canteen food and takeaways

The cost of food and drink at hospitals is notoriously high and options are limited.

Bliss said: “Parents have little choice over where to buy food and drink while at the hospital and are reliant on expensive hospital canteens and franchises rather than being able to prepare food from scratch or shop around.

“The lack of choice is exacerbated by limited facilities on neonatal units.”

A recent report found that more than a quarter of hospitals (27%) don’t have a parent kitchen.

On average, parents spent £96 a week more than their regular food budget while their baby was in a neonatal unit.

Lauren and her fiance lived off hospital sandwiches and fast food – or quick pick-up meals – while Isla was in hospital.

“I had to keep eating, but I didn’t want to have anything in the house because I needed to be with Isla all the time,” she said.

The cost of life-sustaining equipment

When Isla returned home in July, she required oxygen for four months.

This ended last Friday – but the family still operates a sleep study machine that monitors her oxygen levels and an apnea monitor.

They are also looking to buy a CO2 monitor at a cost of £230.

Bliss found 74% of parents with a baby who had been discharged from a neonatal unit in the last year said they were concerned that it was somewhat or very likely that the rising cost of energy could stop them from keeping their home warm this winter – something essential for premature children.

Within the survey, two of the 24 respondents whose babies were currently using at-home medical equipment said the rising cost of energy had stopped them from using the devices their babies need.

Some 47% said they were concerned that the cost of energy may impact their ability to run this equipment in the future.

The charity is calling on the government and Ofgem to ensure energy companies cannot disconnect domestic energy support for households which include a vulnerable baby – and those who need to power at-home medical equipment.

It is also asking for an emergency neonatal fund to offer payments to cover extra energy costs caused by this equipment and for one to cover food and drink, travel, parking, accommodation and childcare costs associated with having a baby in neonatal care.

Read more on the cost of living crisis:
Six in 10 adults struggling to keep up with their bills
Millions skip meals or struggle to buy healthy food
How much will my energy bills increase next year?

‘I feel cheated’: Returning to work

Oliver had to return to work three days after Isla was born, or risk using up all of his two-week paternity leave while Isla was in the neonatal unit.

“He had to, as much as it hurt him,” said Lauren.

“He wasn’t able to be there to see his daughter during the mornings, or change her nappy during the day, or help me. He had to go back to work so that he could help me pay for things.”

Bliss found on average households lost £2,994 in income over the time that their baby was in neonatal care.

Meanwhile, Lauren had to spend four months of her maternity leave watching Isla in hospital.

A new law, backed by the government, could allow parents whose babies require specialist care after birth to take additional time off work.

The Neonatal Care (Leave and Pay) Bill would allow parents to take up to 12 weeks of paid leave, in addition to maternity and paternity leave.

However, although the bill has passed its second reading in the House of Commons, it still must go through the House of Lords before it can become law, which means there is no immediate relief for parents such as Lauren and Oliver.

She now has to return to work just a few months after Isla is out of hospital and said she felt “cheated” from the time she will now lose with her daughter, all while paying £81 a day in nursery fees. This will suck up the majority of her paycheck, with what’s left going toward their mortgage.

“I am basically working to pay for nursery, and to try and keep a roof over our heads,” she said.

‘I would never forgive myself’

Isla will have chronic lung disease for the rest of her life, alongside blindness in one eye. The family is not sure what other problems her prematurity may bring, or if she will have any disabilities because of the bleed on her brain.

But for Lauren, whatever the cost she will continue – even if it means going into debt.

One in four families have had to borrow money or increase their debt because of their baby’s neonatal stay.

“I am concerned, but I won’t stop using it. Money is money at the end of the day,” Lauren said.

“The cost of energy is going to have a massive impact, but I know I can’t stop using it.

“Because I know if I do and something happened I would never forgive myself.”