Hannah Harris spent the first 507 days of her life in hospital.
The Comox Valley toddler weighed one pound, seven ounces when she was born on April 16, 2011. Her twin sister, Hailey, weighed two pounds, 14 ounces. Unlike a typical twin pregnancy where the egg splits in half, theirs had a 30/70 split. This resulted in Hannah being significantly smaller than average. Eventually, she was not able to get enough nutrients to her body, which necessitated an immediate delivery.
Their mother, Bonnie Harris, gave birth via emergency C-section at 29 weeks.
“I didn’t even know I was having twins until 20 weeks,” said Harris, a single mother who was living in northern B.C. at the time. She now lives in Courtenay. “You only have nine weeks to prepare for it.”
She recalls one of her fingers was bigger than Hannah’s ankles.
Following their births, Hailey spent 2 1/2 months in the neonatal intensive-care unit before being discharged. She was born with white matter brain disease and has a mild form of cerebral palsy in one of her legs, but the condition is not readily apparent.
Hannah, on the other hand, was too fragile to leave Vancouver Children’s Hospital, where she spent most of her first 507 days, except the last 2 1/2 months when she was switched to Victoria General Hospital.
When she just was a few days old, Hannah contracted necrotizing enterocolitis, which meant removing part of her bowel.
She had two heart surgeries, one at three months for PDA ligation (patent ductus arteriosus) and a second at seven months for a ventricular septal defect repair. She was intubated during her first 2 1/2 months, on C-PAP (continuous positive airway pressure) for two months, high-flow oxygen for a month, and low-flow oxygen for six months.
Shortly before her first birthday, Hannah was close to coming home but took a step back and needed to be put on Bi-PAP (bilevel positive airway pressure) and intubated. The sisters celebrated their first birthday in hospital. Shortly thereafter, doctors decided that Hannah needed a tracheotomy and was put on a ventilator full-time. Four days after her first birthday, she had a tracheotomy inserted into her windpipe.
Harris and her girls have been home about three years. With the help of family and some at-home nurses, she could slowly ween Hannah off the ventilator.
“My mom’s a huge support, that’s pretty much all I have,” Harris said.
She and the girls were also supported by Easter Seals House Vancouver — where they stayed for six months — as well as You Are Not Alone (YANA) and Jeneece Place in Victoria. The latter offers a comfortable space near the hospital with 10 bedrooms.
“After Hailey came home, YANA gave us an apartment (in Vancouver), so we stayed there for a year, which is amazing.”
On Monday, July 27 — after three years, three months and eight days — Hannah’s tracheotomy was removed.
“It still feels surreal,” Harris said last week.
Hannah is not yet out of the woods because she could again need the trach or Bi-PAP. She is still expected to be sick, especially during the flu season, and to need oxygen more nights than not.
“Because every case of BPD (bronchopulmonary dysplasia) is so different, they don’t know how she will do. There aren’t very many cases like Hannah’s.”
But their life has become more normalized after a journey of four-plus years of home-nursing, hospital admissions and 911 calls.
“It’s hard to remember … normal,” Harris said. “The last couple months have seemed normal, and she’s going to get better now that I don’t have all that equipment. And we have home nursing in our house. I’m looking forward to not using them at night and having my house back.
“I’m expecting this year to be rocky, especially the flu season, but I’m sure we’ll do great,” Harris added.
The sisters are excited to hopefully start engaging in normal activities like going to the swimming pool, and attending day care and pre-school.
Hannah and Hailey also like to dance.
“A couple of years ago I couldn’t imagine doing that,” said Harris, who has documented their journey on Facebook and YouTube.
She has included tips for families experiencing similar circumstances, hoping in a small way to help people through hard times.
The YouTube link to the Harris Family Journey is bit.ly/1Ua1fHZ.
The Facebook link, H&H Harris Family Journey, is on.fb.me/1JKF4Fb.