Just 21 days. That's all the time Angèle and Gus Gionest had with their daughter, Théa.
The infant suffered in utero stroke, and was born with hydranencephaly, a condition where the brain cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid.
They were told she didn't have long to live.
But the Gionests say Health Sciences North staff did their best to make the time they had with Théa before she passed away Oct. 31 special.
To thank them, the couple recently donated $1,000 to the pediatrics unit in the infant's memory, and presented them with a plaque, which was hung in the pediatrics unit. They also wrote staff a letter of appreciation.
“We knew that she wouldn't make it,” Angèle said. “We just didn't know how much time she would have. To our surprise, she stayed with us for 21 days. We had amazing, amazing care at the hospital during those 21 days.”
Health Sciences North Foundation chair Jim Corless said in a press release the family has touched the hearts of hospital staff.
“We will honour Théa and her family by adding her name to our memory wall in our main lobby of the Ramsey Lake Health Centre.”
Sometimes infants with the condition have abnormalities, Angèle said, but Théa “was gorgeous.”
Within hours of Théa's birth, the hospital's pastoral worker had baptized her, because they initially thought she wouldn't live much more than a day. The hospital's social worker also visited.
Nurses helped them create a memory box for Théa, with clay hand and foot prints, a lock of hair and other mementos.
Even every night when the doctors and the nurses would go home, they would actually come and see her, pat her, kiss her, touch her on the forehead.
father of Théa Gionest
A labour and delivery nurse who volunteers with an organization called Now I Lay Me Down To Sleep took pictures of the infant for the family.
When the baby was five days old, pediatrician Dr. Vijay Kumar asked the family if they'd like Théa to be transferred from the neonatal intensive care unit to the pediatrics unit.
“Up to the Sunday, we'd have to spend the whole day with her, and then leave her to go to bed,” Angèle said.
“We wouldn't be with her at all times. We found that very difficult. When they offered us the room on peds, that meant she was in our room 24 hours a day.”
Hospital staff encouraged the couple to make the most of their time.
“I did skin to skin with her,” Angèle said.
“She slept in the middle of Gus and I. She was always in our arms, per their request. They told us 'Don't leave her in her isolette. Make sure you give her as much love as you can.
“I have no regrets at all. I did what I wanted to do with Thea. I wish I had more time, of course.”
Hospital staff also seemed to be emotionally attached to the baby.
“Even every night when the doctors and the nurses would go home, they would actually come and see her, pat her, kiss her, touch her on the forehead,” Gus said. “Then on their days off, they would actually call the hospital and check up on her and ask how's she doing.”
Some of the nurses even attended the baby's funeral, he said.
Pediatrician Dr. Elaine Blacklock also went above and beyond the call of duty, delivering MRI information to Toronto's Hospital for Sick Kids during a personal trip to the city, Gus said.
“We even got a call from Dr. Blacklock a few weeks ago to see how we were doing,” Angèle said. “Not everybody's going to take some of their own time to check up on us.”
As for how the family is doing now, the Gionests say they're taking it one day at a time. The fact that they have two other children to care for — 12-year-old Maissie and two-year-old Samuel — has helped.
“I think that if this would have been our first child, things would have been completely different,” Angèle said. “We have two beautiful children to keep us going.”