Families pay an average of £405 a week while their infant is hospitalized, and some are forced to struggle to pay for life-sustaining medical equipment.
Amid the increased expense of living, premature infants’ families risk falling into poverty or losing time with their sick children.
A poll of 1,928 individuals revealed that, on average, parents pay an additional £405 every week while their child is hospitalized.
For many, statutory maternity pay of £156.66 per week (or 90% of average weekly wages – whichever is lower) comes at a time when their household income has decreased, causing them to incur additional expenses.
According to Bliss, a charity for unwell and premature babies, one in seven newborns in the UK is admitted to a neonatal hospital.
While the majority of kids are born healthy (and spend an average of one-week getting treatment), the families of the sickest babies endure an agonizing hospital stay and are left with a high bill, which is aggravated by the rising cost of living.
Born weighing only 535 grams
Lauren Ormston’s pregnancy was developing smoothly until she went into labor unexpectedly at six months.
Isla was born at 23 weeks weighing 1 lb 2 oz (535 g) and with a 40% chance of survival. This was not even her lowest weight; a few days later, she weighed only 15 ounces (430g).
Isla was permitted to be held for six minutes by Lauren, 27, and Oliver Dewey, 31, before being transferred to the newborn ICU and ventilated.
She had a brain hemorrhage, a heart defect, and kidney failure.
The physician advised us to take each hour as it comes,” Lauren reported to Sky News.
“I was inconsolable; I had no idea what to say, think, or do. Because I had just delivered this infant into the world, and she was now fighting for her life. It was unjust to her.”
130 days of journey
Isla was hospitalized for 130 days in neonatal units at Ashford and St. Peter’s Hospitals in Surrey and Frimley Park Hospital in Camberley, where Lauren visited her daily.
She stated, “There was never a day when I did not see her.”
When Isla moved back to Frimley Park, the round-trip time to St Peter’s Hospital was cut in half, although the family had to pay £20 a week for parking.
Isla was once rushed to Great Ormond Street Hospital for surgery on her eye, but Oliver was not permitted to be on the ward, so he had to pay £400 for two nights at a hotel to be close to his daughter.
Isla’s right eye could not be saved, and the family had to pay £600 to stay at Great Ormond Hospital.
Lauren, like the majority of parents questioned by Bliss, spends approximately £150 per week on fuel. A punctured tire on the road one day added £300 to the bill.
Bliss reported that parents who can drive to the hospital pay an average of £101 per week, while those who must rely on public transportation spend £119 per week.
Despite spending more on travel, parents who use public transportation to visit their infants are more likely to have lower incomes.
The prohibitive expense of commuting to and from the newborn unit has a direct bearing on the level of parental involvement in their child’s care.
84% of those who utilized public transportation stated that it prevented them from becoming as involved as they want.
Expensive canteen and takeout food
Hospital food and beverages are notoriously expensive and restricted in variety.
Bliss said: “Instead of being able to create food from scratch or shop around, parents are relying on overpriced hospital canteens and franchises when purchasing food and beverages at the hospital.
The dearth of options is worsened by the limited amenities available in neonatal hospitals.
More than a quarter of hospitals (27%) do not have a parent kitchen, according to recent research.
While their infant was hospitalized in a newborn unit, parents spent an additional £96 per week on meals.
While Isla was in the hospital, Lauren and her fiance subsisted on hospital sandwiches and fast food – or meals that could be picked up quickly.
She remarked, “I had to continue eating, but I didn’t want any food in the house since I needed to be with Isla at all times.”
The price of life-sustaining apparatus
When Isla returned to her home in July, she was oxygen-dependent for four months.
This ended on Friday, but the family continues to monitor her oxygen levels and apnea with a sleep study machine.
They also intend to purchase a CO2 meter for £230.
Bliss discovered that 74% of parents with a baby who had been discharged from a neonatal unit within the past year were afraid that the rising cost of electricity could prevent them from keeping their home warm this winter, which is vital for preterm children.
Within the poll, two of the twenty-four respondents whose babies were currently utilizing at-home medical equipment said that the increased cost of energy had prevented them from using the necessary gadgets.
In the future, the cost of energy may hinder their ability to operate this equipment, according to 47% of respondents.
The charity is urging the government and Ofgem to prevent energy firms from severing domestic energy support for households including a fragile infants, as well as those requiring power for in-home medical equipment.
It is also requesting an emergency neonatal fund to provide payments to offset the additional energy expenses generated by this equipment, as well as a fund to cover the costs of food, drink, transportation, parking, lodging, and child care connected with having a newborn in neonatal care.
“I feel cheated”: Going back to work
Oliver had to return to work three days after Isla’s birth, or risk exhausting his two-week paternity leave while Isla remained in the neonatal intensive care unit.
Lauren stated, “As much as it hurt him, he had no choice.”
“He was unable to visit his daughter in the mornings, change her diaper during the day, or assist me. He had to return to work to assist me to pay for things.”
Bliss discovered that, on average, households lost $2,994 in income while their infant was receiving neonatal care.
Lauren was required to spend four months of her maternity leave visiting Isla in the hospital.
A government-backed new rule might let parents whose newborns require specialized care take extended time off work.
In addition to maternity and paternity leave, parents might take up to 12 weeks of paid leave under the Neonatal Care (Leave and Pay) Bill.
However, although the bill has passed its second reading in the House of Commons, it must still pass through the House of Lords before it can become law, meaning that parents like Lauren and Oliver will not receive immediate relief.
She must now return to work just a few months after Isla has been discharged from the hospital, and she feels “cheated” at the time she will miss with her daughter while spending £81 per day in childcare fees. This will consume the majority of her salary, with the remainder going toward their house payment.
She stated, “I am simply working to pay for daycare and have a roof over our heads.”
Never would I forgive me
Isla will be blind in one eye and suffer chronic lung disease for the rest of her life. The family does not know what other complications her premature birth may create or if she will have any difficulties as a result of the brain hemorrhage.
But Lauren will persevere regardless of the cost, even if it means incurring debt.
Due to their baby’s neonatal hospitalization, one in four families has had to borrow money or increase their existing debt.
“I am concerned, but I will continue to use it. Funds are funds at the end of the day “Lauren said.
“The price of electricity will have a significant impact, yet I cannot stop using it.
Because I know that if I did, I would never forgive myself if something occurred.
