The mother of a child with a rare, life-threatening illness says nurses are refusing to administer the medicine that most effectively treats his seizures — all because of hospital politics surrounding children and medical marijuana.

Maria Niembro’s 11-year-old son, Francesco, has CFC Syndrome (Cardio-Facio-Cutaneous). “There are only 450 people like him in the world,” Niembro says. “I hit the lottery with him.”

That lottery though, is one no parent would ever wish to win. Francesco is non verbal, has severe developmental delays, is fed through a G-tube, and is plagued by life-threatening seizures.

His bedroom looks like a hospital room. From the industrial bed, to the dresser loaded with medications, to the cot where Maria sleeps beside him.

Amidst the collection of pills, liquids and medications he takes every day, one small bottle has done more than any of them to reduce the seizures which he endures as many as 10 times a day.

It’s a legal medication, prescribed by a Toronto neurologist, but not one nurse will administer it.

Why? Because it’s cannabis oil.

“The hospital staff, the hospice care workers, they all tell me there is no policy in place. They can’t administer it, even though it is legal, even though it is prescribed. They say they can’t do it. I ask why and they say ‘It’s political, the College of Nurses has to give the green light.’ ”

During a recent week-long stay at SickKids Hospital, Maria says the nurses refused to administer the oil, keeping her essentially tied to her son’s hospital bed to give him the drug that seems to miraculously silence his seizures.

“He used to get seizures 2-10 times a day. Since taking the cannabis oil, he has gone days without seizures. He still has some but not like before.”

A full time job

As a single mum, life with Francesco is 24 hours a day. Nonstop. Hospice care is the only reprieve for Maria, but there too, she says, staff are refusing to give him the cannabis oil.

Maria administers the oil herself through his tube, twice a day, but without help it’s taking a toll.

“I am supposed to have a one week break later this month, but Frankie needs the cannabis oil, which means I would have to take the subway for one hour to get to the hospice, to give him the medication in the morning and then come back to give it to him in the evening too.”

Maria belongs to a closed Facebook group of other parents struggling to navigate the murky waters of medical marijuana for children. She says there have been postings from parents who are contemplating taking their children out of care homes because, there too, no one will administer prescribed cannabis oil.

“This is crazy,” she says. “It’s not illegal. It’s prescribed. Why are they rejecting and neglecting to administer this. My son’s quality of life depends on that medication. It doesn’t make sense.”

“He wakes up 3 to 4 times a night,” she adds. “And that’s not even when he has seizures. I need to be with him 24 hours a day.”

Postscript:

The College of Nurses is the body that sets and enforces the guidelines for nurses. So far we have been unable to get answers from them. The Ontario Ministry of Health, meanwhile, tells CityNews they are now investigating these claims, but say they are not responsible for dictating what drugs nurses can and cannot administer. We are also reaching out to the nursing unions and will update this story as we get more information.

SickKids Hospital has issued the following statement:

At SickKids our top priority is the health and safety of our patients.

We cannot comment on a specific case. SickKids does not currently prescribe or administer cannabinoid oil as part of clinical care, as there are not enough high-quality studies about the safety and efficacy of its use in treating seizures in children. We understand that there is a need for this type of research and we have recently received Health Canada approval for a clinical trial to determine the safety and dosage of cannabinoid oil for the treatment of patients with drug-resistant epilepsy.

In the meantime, although SickKids staff do not currently prescribe or administer cannabinoid oil for seizures, parents are supported if they wish to administer it to their children while in hospital.