A St. Albert family dropped off thousands of dollars worth of goodies to Edmonton’s four neonatal intensive care units earlier this month after their insurance provider revised its stance on covering a special infant formula.
Baby Eleanor, now six months old, made headlines in December when parents, Natalie and Richy Trinh, came forward with concerns over the limitations of their health coverage.
Eleanor was born with a severe cow’s milk allergy and requires a special amino acid-based formula called PurAmino to survive. At $60 per can, the family estimated the formula would cost them about $7,000 before her first birthday and Richy’s health insurance plan, the Alberta School Employee Benefit Plan, wouldn’t cover it.
The GoFundMe campaign was started to help the family afford the specialized baby formula over the next year, but after receiving news that their appeal went through, Natalie and Richy decided to use the money raised – $3,500, plus another $1,500 in private donations – to help out hundreds of other tiny babies across the city.
“When we set up the GoFundMe page, we had said that in the event that we don’t need this – and that’s what we’re hoping for – we will be donating all the money to the NICU,” explained Natalie. “Everyone who donated knew that.”
The Trinhs’ asked the NICU staff for a “wish list” – items they would love to have but cannot afford within the hospital’s budget restraints – and dropped off bags full of colourful blankets, books, Tinker toys and onesies to the Stollery, the Grey Nuns, the Royal Alexandra and the Misericordia hospitals.
Natalie expects she bought out Edmonton’s preemie clothing market.
“It’s hard to find a word to describe how appreciated it is by families currently living that NICU experience,” said Marnie Kumpla, program manager for the NICU at the Misericordia, where Eleanor was treated in the fall. “These gifts, or items, that they are free to use during their stay really help ease the stress they are feeling.”
It’s also nice for staff to be recognized in this way, said Kumpla.
Eleanor spent a total of four weeks at the Mis as doctors and nurses treated her for severe weight loss – she lost 23 per cent of her birth weight within five days of being born – and internal bleeding caused by her allergy.
“We couldn’t think of anyone better to donate that money to after the level of care we experienced with our daughter. They were just so phenomenal,” said Natalie. “They give so whole-heartedly and take such good care of not only the babies, but of the parents and the families.”
She hopes that the donation will help other families feel more at home, and less like they are in a hospital setting, as they await their baby’s recovery.
The Trinhs’ received news that their appeal was successful earlier this year. While benefit plans don’t typically cover infant formula because it’s considered a caloric agent, Natalie explained that under special circumstances, such as Eleanor’s, where the formula is life sustaining and there are no other alternatives, providers can make case-by-case decisions.
Natalie is working with the provincial government on policy changes that would make the process easier for families in the future. She recently met with Health Minister Sarah Hoffman again, and while she can’t reveal the details, she said a solution is forthcoming.
“Things should be announced fairly quickly and changes should start to happen as of May 1,” said Natalie.