Alex Bois-Bonifacio never imagined that she’d feel punished for wanting both a business and a family.
But at 30 years old, as doctors tend to her newborn daughter – born with a life-threatening birth defect – that’s exactly the case for the owner of White Rock’s Spiritual Ingredients bakery.
“It turned out to be sort of a little bit of a punishment to do the best business decision of not drawing a salary,” Bois-Bonifacio said Tuesday from BC Women’s Hospital, where Aila was born Jan. 14.
“If you aren’t drawing a salary, you aren’t eligible for any maternity benefits. In the government’s eyes, on paperwork, I’m not working.”
With her first child, Bois-Bonifacio simply took about four weeks off, then brought her son to work with her. She had expected to do the same with Aila.
That all changed last month, when she and her husband Alvin learned of Aila’s critical condition – a congenital diaphragmatic hernia – 35 weeks into the pregnancy. Affecting one in 2,200 births, it occurs when the fetus’s diaphragm either fails to form or to completely close, leaving a hole that allows abdominal organs to travel into the chest cavity and inhibit the growth of the heart and lungs.
The survival rate, according to the Canadian Pediatric Surgery Network, is 63 per cent.
While Aila’s parents have been told her case is considered moderate as opposed to severe – she was born with her small and large intestines, as well as her spleen, in her chest – she remains in the neonatal intensive-care unit (NICU) at BC Women’s Hospital.
“Aila’s doing very, very well, but she’s still got a long road ahead of her,” Bois-Bonifacio said. “The biggest news we’ve received so far is they think they can almost say she’s guaranteed to be out of the woods.”
The parents have yet to be told conclusively that their daughter will survive. That news is hoped to come this week, as doctors gauge the status of Aila’s pulmonary hypertension.
But, “my husband and I have kind of learned to hear those things and not get too hopeful… We’ll kind of take it one day at a time. We’ve learned to celebrate the small things on the days that they come.”
She noted it was “kind of miracle” that Aila’s condition was discovered pre-birth at all. It was only diagnosed as a result of extensive monitoring Bois-Bonifacio was undergoing for borderline pre-eclampsia – a high blood pressure condition that can also be life-threatening if not caught early.
With those obstacles a not-so-distant memory, the family is fully focused on Aila, and grateful for support received both at the bakery and through social media, where Bois-Bonifacio’s mom, Anna Christie, has been posting regular updates.
Christie told Peace Arch News if Aila can be taken off a respirator this week as hoped, it will be “very exciting.”
“Because Alex will be able to hold her. She’s never held her.”
Christie and Bois-Bonifacio are both also lifted by response to a gofundme campaign that Christie launched to enable the family to contract out complex cake work that her daughter, a fourth-generation pastry chef, would normally undertake herself.
The funds – they’ve set a goal of $15,000 – will enable the bakery, which opened three years ago, to continue growth and operations while Bois-Bonifacio focuses on Aila. Once she’s “out of the woods”, because her organs were out of place, the newborn’s body will still have to learn how to process food.
As of Wednesday, just over $10,300 had been donated.
“Oh wow,” Bois-Bonifacio said, on learning the fund had surpassed the two-thirds mark.
“I’m so grateful. It’s amazing to see how far and how wide the support has spread. It has lifted us in the times it has been difficult.”
Christie described her daughter’s situation of being unable to claim any government benefits as a “hole for women entrepreneurs”. Those who choose to invest profits in growing their business – including leasehold improvements, new equipment and creating jobs – are left high and dry in cases such as her daughter’s, even if they’ve been spending 60 hours a week at work.
“If you’re trying to do the right thing business-wise and then you run into a glitch like this… there’s no social safety net for you, as a woman,” Christie said.
“Nobody expects to have a sick baby that you need to be with every day.”
Bois-Bonifacio agreed it’s “an outcome that we didn’t foresee.”
“It’s been a rough nine months, but we’re slowly starting to see the light at the end of the tunnel.
“We’re going to take it one day at a time.”