‘We know there’s room for change’: Family says Sask. should do better for families with unique medical needs
SASKATOON -- Maria and John Tumambing had plans to work and start a family in Regina, but those plans changed after they had their son Santino and certain services were not available.
“When Santino sleeps he needs someone awake to make sure he doesn’t get disconnected from the ventilator otherwise he can potentially die,” Maria explained.
Santino was born with Haddad Syndrome, a lifelong condition that’s a combination of Hirschsprung Disease and Congenital Central Hypoventilation Syndrome. When he was born at Regina’s General Hospital, he stayed in the Neonatal Intensive Care Unit (NICU) for a month before being transported to Saskatoon’s Royal University Hospital.
“Regina did not have a P.I.C.U. which is so unfortunate,” said Maria, adding their 2-year-old has already undergone five major surgeries. “We ended up being in Saskatoon for the first five months of Santino’s life. We had to be away from home and stay in hospital. In order for Santino to be home, he needs to have nursing support and needs a ventilator.”
The family recalls numerous times Santino fell ill and the family rushed to emergency in Regina. Medical staff would come back saying they could not support him and were not trained to care for his condition.
“It was so frustrating and we would end up in Saskatoon again. It was very, very hard because we had to leave work.”
The Tumambing family was promised they would get five nights a week of respite in their home so both Maria and John could get the rest they need to work.
“Unfortunately, it didn’t happen,” Maria told CTV News. “We would have nursing support maybe once or twice a week, sometimes just once, sometimes nothing. Most of the time it would get cancelled. They would just end up canceling last minute and it kept on happening. I reached out to the patient advocate because it’s so hard to function when you’re not sleeping.”
After doing their research the family decided to move to Richmond British Columbia, where they say medical staff are better equipped to help.
“We were part of a network all over the world where some families who live in B.C. were telling us the province offers better support for families with Santino’s condition,” John explained. “We’ve been in contact with the patient’s advocate so many times. We just gave up and decided to move to B.C.”
Maria says it’s been a beneficial move for all-involved.
“Families told us there’s better nursing support with more nursing hours, so we can get back on track with our lives and careers. We did not get that in Saskatchewan. We’re grateful for everyone trying in Saskatchewan, but he was the only case in Regina with a ventilator and has a tracheostomy. We can only see the difference in how they look at my son and how quick they are to make arrangements.”