Eleanor Trinh is only six weeks old but she's already faced more than one battle for her life, one of which involves a lot of red tape and a special formula called PurAmino that she needs to survive. The Trinhs – mom Natalie and dad Richy – face thousands of dollars of out-of-pocket expenses because Richy's health insurer doesn't cover the food.
While some details of this story aren't pleasant, mom Natalie Trinh assured the Gazette that her daughter is on a good path to health now.
"Since she's been on it, she's been better."
Within days of her birth on Oct. 25, Eleanor had blood in her diaper and the pediatrician suggested that it might be a cow milk allergy. She was put on a formula product called Nutramigen, but the bleeding didn't stop. Tests at the Stollery Children's Hospital suggested that the blood was actually Natalie's, as she had hemorrhaged during the delivery.
They were sent home, told not to worry, and to stop the formula.
"'She's too young to have an allergy. Just keeping feeding her and it will pass.'"
That was just the first visit to the hospital, however. The baby's skin was getting pale, she was losing more weight, and she was becoming lethargic, even disinterested in feeding either from the bottle or the breast. Natalie thought that her own milk might be the source of the problem. Eleanor had dropped 15 per cent below her birth weight with no rebound.
So the pediatrician recommended she be fed every two to three hours, a routine that they had only managed for a day before the scale showed she was still losing weight. She was sleepier, paler and a blue tinge had formed around her mouth and face. An ambulance was summoned to get her oxygen and observation at the neonatal intensive care unit (NICU) at the Stollery.
"They deemed that nothing was wrong with her, that the health nurse was being over-precautious, and that we just needed to feed her more: 'Feed her, feed her, feed her … and she'll perk up.'"
Returning home, however, saw her condition slip even more. She was "completely lifeless," Natalie said, and Eleanor now only slept, unable to be roused to feed. The family was urged by the pediatrician to go back to the Stollery and not leave until the baby was admitted. She was taken to the Misericordia Hospital and given IV fluids for dehydration. Tests determined that her electrolytes were "out of whack" and the blood in her stools had returned after having stopped for a few days. Everyone was shocked to see the child's poor condition.
The Nutramigen was restarted and Natalie was told to stop eating soy and dairy products. Eleanor's weight started to go up and her blood was normal. Going back home, however, saw the return of the blood in the diapers.
Natalie stopped nursing entirely but the bleeding continued so Eleanor returned to the Mis. At that point, they tried to help her tummy to heal by giving her digestive tract a rest. This meant they stopped feeding her for two full days. It was the second time this tactic was tried.
"It's heartbreaking. She's starving. She's basically screaming for 48 hours. It's pretty hard to watch."
That's when the doctor determined that PurAmino, an amino acid-based formula for babies with severe cow's milk protein or multiple food protein allergies, should be prescribed.
"It's quite rare that a baby will actually have to go on it. It's more for babies who are chronic for colitis and things like that. He said that with such a severe allergy … that it was best if she just goes on it. Since she's been on it, she's been better."
Born at 6 lbs. 11 oz., Eleanor had dropped to 5 lbs. 2 oz. at her lowest point. Now she's at 7 lbs. 6 oz. and still gaining, her bloodwork and electrolytes are good, there's no bleeding, and she's behaving like a normal baby.
"We were elated, just relieved that we had found something that was going to work for her. It just made me feel good that there is something out there," Natalie said.
"It's a very, very basic formula. Her body just digests all of it," Richy said. "It seems to work."
And now the bad news…
"The only drawback is that the cost is very expensive," he added.
PurAmino is $60 a can and is only available by prescription, ordered by the caseload. Eleanor eats more than two cans each week, and will only need more and more as she grows.
They easily estimate that she'll eat her way through $7,000 before her first birthday. Richy is a teacher with Edmonton Catholic Schools but his health insurance through the Alberta School Employee Benefit Plan, or ASEBP, doesn't cover it.
"They basically said, 'we don't cover any infant formulas.' It's considered a caloric agent, which means that you would add it to something else to build up calories in a meal," Natalie said. "It's considered an over-the-counter product, and they don't cover over-the-counter products."
Alberta Blue Cross, she continued, does cover it but the family can't afford to pay into two health insurance companies. Instead, they have requested an interview with Alberta's Health Minister Sarah Hoffman to discuss policy changes and other courses of action that the family can take in order to get coverage. That meeting has been confirmed for next Friday.
"We're in a battle with our insurance company and we need the provincial government to help," Richy added. "If they can cover Viagra, if they can cover medicine for sex changes, for goodness' sakes … this is my baby's only food!"
Minister Hoffman responded via email to confirm that the meeting is a priority.
"My team is working with the ministry to explore our current policies related to infant formula, as well as those in other jurisdictions. I have instructed my officials to begin the necessary analysis that would allow me to consider providing coverage as a standard provincial health benefit," she wrote, noting that a number of families have contacted her office to tell similar stories of coverage denial.
"We owe it to these children and their families to do our due diligence to look into this."
"It's obviously affecting a lot of families. It needs to change," Natalie continued. "People are writing in, saying, 'We went close bankruptcy trying to afford this formula' or 'We couldn't afford it so we had to put them on another formula and our child suffered for that.' That, to me, is appalling. It's just not right."
The Trinh family remains optimistic.
In the meantime, they have also started an online petition at www.change.org to convince all insurance companies to cover specialized formula for infants and children. There were already more than 700 people who had offered their names by yesterday morning.
They have also started a GoFundMe campaign to help build up their bank account so that they can afford the formula as they work toward changing the system. By yesterday, they had amassed more than $2,500 of the $7,000 goal.
