BC ministry overrules parents, orders surgery for boy’s rare condition

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The parents of a baby boy born with a rare condition that affects multiple body systems have lost their last-minute bid to get an injunction against having a breathing tube inserted into his airway.

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Davis and Riina Lim’s fourth child, Theo, was born just over a year ago with a genetic disorder known as VACTERL that involves a complex array of vertebral, kidney, anal and esophageal anomalies.

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The airway anomalies can make breathing difficult and doctors at BC Children’s Hospital, where Theo has been getting practically treatment from the day he was born, advised him to perform a tracheotomy.

But Lim — who has worked as a medical technician in the Canadian military and has spent countless hours in the hospital caring for his son — objected and filed an injunction application on Monday, just a day before the scheduled surgery. The BC Supreme Court application failed and the surgery was performed Tuesday.

It went ahead over their objections because doctors had earlier applied to the Ministry of Children and Family Development for an interim custody order.

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“Me and my wife knew he didn’t need one,” said Lim a couple of days later. “I’m confident he would get better at breathing if he didn’t get the surgery.”

“We wanted them to consider other therapies,” he said from the medical team. “Why put a hole in his throat?”

The parents, whose home is in rural Salmon Arm — although Lim and his wife are rarely back there these days — have three girls with no health problems.

Theo’s medical journey was never smooth, and an earlier surgery didn’t go well. He contracted COVID-19 at just a month old. That exacerbated his health problems and the newborn ended up intubated and fighting to survive.

Lim says a CT scan showed another threat: His trachea was literally being crushed by his aorta. The surgery to correct that led to a secondary infection and he nearly died after a cardiac arrest. The baby was on powerful antibiotics for six weeks, he says.

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Lim says his disagreements with some doctors providing Theo’s care started before he opposed this week’s surgery. He feels some have been high-handed and won’t listen to the parents’ opinions about what’s best for their baby.

Lim has questioned how much antibiotics and depressants have been prescribed during Theo’s treatment.

The tension ramped up a couple of months ago to the point doctors asked for the custody order.

That unusual move came after Lim tested Theo’s tolerance to go maskless one night after his bath — a time when he usually goes without one anyway. With a nurse present, Lim says he videotaped Theo maskless for about half an hour.

When they were shown the video the next day, doctors insisted Theo was struggling. Lim sees it differently but doctors called in the ministry, claiming he was putting the baby’s health at risk.

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Lim insisted he didn’t realize he was handing over all authority about Theo’s care when he signed the order, and regretted that he had used to push ahead with the tracheotomy.

After the surgery, Lim posted photos of Theo with the breathing tube inserted and called the operation a “travesty,” lamenting that he hadn’t “guarded, defended and protected” him.

According to Lim, he did so despite being warned not to share anything on social media, or his visitation rights might be further curtailed. He says he’s already subject to a twice-weekly limit on visits, and is no longer allowed to be present when doctors are discussing Theo’s care.

A ministry spokesperson says taking interim custody is always a last resort, and doing so to deliver health care is “very rare.” No one will speak to the specifics of Theo’s case, citing privacy reasons.

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But the act under which the ministry took custody says it should only happen “if the child’s development is likely to be seriously impaired by a treatable condition and the child’s parents refuse to provide or consent to treatment.” That opinion has to be confirmed by two medical practitioners and only “to preserve the child’s life or to prevent serious or permanent impairment of the child’s health.”

While still critical of the surgery, Lim says he hopes to clear the air at a protective hearing at the end of the month, and to restore access so he can look after his baby.

He says Theo is doing well, though the boy is heavily sedated and is having some post-surgery symptoms. He won’t be released from the hospital into his parents’ care while the custody order is in place.

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“We’re just angry,” says Lim, who says he feels disrespected by the system. “I have no freedom, no protection, nothing at the end of the day,” he says. “I just hope (this predicament) doesn’t happen to other parents.”

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