‘She’s a force of magic’
After 343 days in McMaster Children’s Hospital, Everleigh Hall is going home May 6
Three hundred and forty-three days.
It’s a countdown that has been top of mind for Brodi Lewis every day since May 25, 2019 — the day her daughter Everleigh Hall was born.
Coming up on nearly a year, it’s not a countdown to the milestone birthday typically marked with cake.
It’s the number of days her daughter has spent in the hospital since birth.
Everleigh was born with Wolf-Hirschhorn syndrome, a rare genetic disorder caused by the deletion of genetic material near the end of the short arm of the fourth chromosome.
In her case, Lewis said Everleigh was born with low muscle tone, narrow airways, broken vocal chords, a cleft palate, holes in her heart, club feet and developmental delays.
The tot also requires a breathing tube.
After a year spent between the neonatal and pediatric intensive-care units at McMaster Children’s Hospital in Hamilton, Everleigh is expected to come home on May 6.
“There is nothing I want more than that right now,” said Lewis.
But, to bring their daughter home and keep her alive, the family requires a ventilator, suction machine, pulse oximeter, resuscitation bag and oxygen, as well as specialty strollers, chairs and equipment. They also require home nursing seven days a week.
Lewis said those costs would have been 75 per cent covered by the Assistive Devices Program (ADP), run by the Ontario Ministry of Health. But then COVID-19 hit and, on March 24, the province declared the office a non-essential workplace, meaning all new applications ground to a halt.
Without funding, the chances of Everleigh coming home were dampened, said Lewis.
“I almost wanted to give up,” she said. “It almost broke my spirit.”
Lewis is one of thousands of Ontarians impacted by the closure, which could keep their loved ones in the hospital and unable to return to the community safely.
“When you basically say that my daughter’s life is expendable, that breaks my heart,” she said.
“It just baffles me that places like the Beer Store were considered an essential service and this was not.”
Without the program, the family now bears the cost of at least $1,576 per month to keep Everleigh at home. Left in a scramble, Lewis said she had to “pick herself off the floor” and keep going for her daughter, who she calls her “little warrior.”
“It’s not a good feeling to think I can’t afford my child,” said Lewis. “That’s heartbreaking.”
Lewis said the journey home started in September, but a number of setbacks — including cardiac arrest as well as a nearly collapsed lung — kept Everleigh in the hospital away from her two older brothers and the outside world.
Even before ADP closed, Lewis said COVID-19 had also pushed back the necessary training that would enable the family to provide the 24-7 care Everleigh needs.
Losing their finalized date after nearly a year of fighting would be heartbreaking, said Lewis.
“Leaving the hospital without that child is the hardest thing you have to do,” said Lewis. “I’ve had to go home, come back and do that every day, all over again. It absolutely just hurts.”
To help cover costs, the family will be hosting a karaoke fundraiser from Tracie’s Place at 7 p.m. on May 3. Due to the pandemic, the night coined “Singing the Baby Home” will be livestreamed on Facebook via the Friends of Tracie’s Place Facebook group. Donations to the event can be arranged up until May 6 by emailing s.england@bell.net.
Lewis said the funds raised will be used as a “nest egg” until ADP reopens and begins taking on new applicants. Without it, they risk Everleigh — who is immunocompromised — returning to the hospital.
“(Hospital staff ) want nothing but to get her out of there,” said Lewis. “There is nowhere safer for her than to be at home.”
Being able to have her home would allow them to start on a “mile long” bucket list of simple things they could do together, like watching movies, snuggling on the couch and just sitting together in the backyard, said Lewis.
While pregnant with Everleigh, Lewis said the signs of Wolf-Hirschhorn syndrome were seen at around 20 weeks. Their unborn daughter had a small jaw, her growth had slowed and doctors thought she may have had trisomy 18, which had her deemed “incompatible with life.”
Lewis said she was at high-risk of miscarrying or even stillbirth.
But, they decided to let their daughter tell “her own story.”
At birth, she beat the odds. After all of Everleigh’s “struggles,” Lewis said she wouldn’t let the temporary closure of ADP keep their daughter from seeing her next chapter.
“She’s a force of magic and just a powerhouse,” said Lewis. “She makes everything so worth it.”