For the love of Alexander: a Cape Breton family’s long, hard road

“It’s done,” said Tania Bond-MacNeil on Tuesday.

But it’s not done.

Her 13-year legal odyssey may be done.

But this is a story about love.

And her boy still needs her.

So it’s not done.

Supreme Court ruling

Alexander MacNeil, now 15, doesn’t know about his mother’s long legal campaign that ended this summer with a decision by the Nova Scotia Supreme Court reading, “(Dr. Andrzej Kajetanowicz’s) actions were that of a reasonable and prudent physician in the circumstances.”

He likely wouldn’t understand it due to the brain damage resulting from a failure of the newborn screening program at the IWK Children’s Hospital to notify his attendant doctors at Cape Breton Regional Hospital about a thyroid condition obvious on his newborn blood test.

While the Nova Scotia Health Authority and IWK reached an undisclosed financial settlement that also allowed them to avoid admitting fault before the lawsuit launched by Tania (Alexander’s mother) went to court in 2019, Kajetanowicz refused to settle or accept blame.

The former neonatologist at the Cape Breton Regional Hospital was the only doctor who saw the results in time to save Alexander’s developing brain with a hormonal treatment.

He didn’t call his wife, Dr. Danuta Kajetanowicz, the reporting physician at Alexander’s birth, or tell the family doctor, because the printout of Alexander’s test results said it was already being done by staff at the IWK as per existing protocols.

Except they never did.

“One phone call is all it would have took to change the course of Alexander’s life,” said Tania.

Not just Alexander’s life, but her own life and those of her other four children.

She doesn’t share the opinion of two Supreme Court rulings that have found Kajetanowicz was not negligent.

But what’s done is done.

Alexander is Alexander.

The journey forced upon her family has shaped them all.

And she’s proud of her family.

“(Tania MacNeil’s testimony) was both ‘gut-wrenching’ and remarkable at the same time, a testament to her uncommon strength,” wrote Justice Patrick Murray in his decision.

“As a family they were attempting to cope with Alexander’s growing difficulties, all while having her other children under her care.  Alexander’s siblings were (and are) attempting to respond to the weighty burden on all of them.”  

Ultrasound discovery

Tania MacNeil held her seven-month-old daughter Emily high on her chest as she lay on the ultrasound table in 2008.

“I remember telling Corinne (the technician), ‘I don’t care if it’s a boy or a girl, I just want to see 10 little fingers and 10 little toes,” remembered Tania.

“Then Corinne said, ‘uh, I can’t do that for ya, Tania’.”

There were 20 little fingers and 20 little toes. There were twins.

Despite both working full time, her as a licensed practical nurse and her husband Billy as a construction labourer, with three children, times were tight.

And now there were two more on the way.

But they managed. 

Just like her previous pregnancies, everything went smoothly.

“Boom, boom, boom, they came out 11 minutes apart, healthy and crying just as they should be,” recalled Tania of the birth.

They were a good size, too — William weighed six pounds, two ounces and Alexander weighed six pounds, two and a half ounces.

Both boys’ heels were pricked for blood samples that were sent off to the IWK Hospital in Halifax to be tested under the newborn screening program for the presence of a variety of diseases and irregularities.

The family was soon home in their North Sydney apartment with their identical twins.

A nurse and by this point a veteran at raising babies, Tania noticed differences between the two immediately.

Alexander barely cried, the nipple on the bottle had to be aligned perfectly for him to latch on, he choked easily and coughed regularly.

Thirteen days after the twins’ birth, Kajetanowicz received the test results from the IWK.

They had a “P” marked on them.

“P” stands for panic.

The test had identified that Alexander’s thyroid stimulating hormone (TSH) levels were exceedingly high — a sign that his body wasn’t producing the hormones required for normal development.

A thyroid condition can be compensated for with a readily available hormonal replacement treatment called Synthroid, but if that doesn’t start within 14 days of birth, then permanent brain damage begins.

There was one day left, according to that timeline.

The test results also contained the notice “Recall has been initiated by the IWK Health Centre.”

That established protocol sees the newborn screening co-ordinator contact the responding physician, in this case Danuta Kajetanowicz, by phone and provide them with a copy of the test results. The testing is to be repeated, TSH levels confirmed and a custom prescription for hormone treatment issued to compensate for what the infant’s body isn’t producing.

Andrzej Kajetanowicz only got the report because the previous year he’d created a policy that required all newborn blood screening tests also be sent to him so that he could check that the lab hadn’t missed any warning signs.

The protocol was meant as a secondary check, but not a replacement of the existing newborn screening program protocols.

He underlined the abnormal lab result and put an asterisk by TSH Neo-Natal and signed it. The evidence indicates neither his wife, nor Alexander’s family doctor were ever given a copy or informed by the newborn screening program.

Meanwhile, Tania worried and struggled on.

Differences in twins’ development

As William began following her with his eyes and reaching for things, Alexander didn’t.

His muscles felt soft and flaccid. His colouring was off.

She made an appointment with her family doctor, who noted that Alexander was gaining weight and cautioned her against comparing two babies.

As the household breadwinner, she returned to work.

“William was trying to crawl, transitioning to baby food, ‘gooing’ and ‘gaaing,’ smiling and laughing but Alex was doing none of that,” recalled Tania.

“He had this cough and this shrill, weak cry.”

Another appointment with the family doctor led to a specialist appointment with pediatrician Dr. Andrew Lynk when Alexander was eight months old.

“I thought, ‘OK, finally someone’s going to listen,’ I was so frustrated,” said Tania.

More checks were done and nothing found.

Another appointment was scheduled for when Alexander turned 14.5 months.

“I thought, ‘Oh my God, Ray Charles could see something is wrong here,’” she recalled.

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“To have a child born with congenital hypothyroidism and go without treatment was unheard of at the time because neo-natal testing had been catching it for so long.”

– Tania Bond-MacNeil

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When he turned 14.5 months, Alexander could still barely sit up, wasn’t transitioning to baby food or reaching for things.

A referral was issued for physio and then as Tania was about to leave, Lynk asked if there was a family history of thyroid deficiencies or low iron — there weren’t.

Blood tests were ordered and Tania took Alexander directly down to the lab to have them taken.

She went home.

Two hours later, the phone rang — Lynk wanted Alexander brought back to the lab to have more tests taken.

That was done.

A few hours later, he called again, told Tania that Alexander’s TSH levels were way off. Over the coming days, multiple tests were done to regulate the dose of Synthroid.

“I thought ‘finally, this is it. This is what’s wrong with my child, we’re not crazy,” said Tania.

“Within two days of beginning on the Synthroid, his colour had improved, there was a sparkle in his eye. Within a week, he was ‘gooing’ at you and trying to smile.”

Then came a call from Lynk, asking that both she and Billy get on the phone and sit down.

He told them how when the bloodwork showed such high TSH levels, he sought a copy of the neo-natal bloodwork from the IWK in Halifax and discovered what was missed.

He also told them that as a result of going 15 months without the required hormone therapy, the prognosis for Alexander was bad.

“To have a child born with congenital hypothyroidism and go without treatment was unheard of at the time because neo-natal testing had been catching it for so long,” remembered Tania.

“We were warned that it was more than likely Alexander wouldn’t ever walk without assistance, he didn’t know if he’d be able to learn to talk. Cognitively he’d be severely delayed. We were devastated.”

Defying expectations

Alexander MacNeil would show that he could come further than anyone expected.

Development began happening fast.

With a lot of help and attention, he learned to crawl, to walk and to talk.

But he didn’t show affection, developed fixations and had little concept for his own safety.

He’d sometimes hurt his siblings.

Testing placed him on the autism spectrum (below the first percentile for some executive functions), he has ADHD and learning disabilities.

Billy and Tania separated.

She worked backshifts, walking the 45 minutes to and from 12-hour nursing shifts during times she couldn’t afford a vehicle, then parenting during the day.

“I know what it’s like to look at a fridge and wonder how you’re going to feed five children,” said Tania.

“There were times, I tell ya, I didn’t think I’d get through it. But you get through it. You do.”

An old tole-painting hobby was resurrected.

She’d buy offcut pine boards from the hardware store and turn them into Christmas décor to sell. She started making hutches and little cabinets. Their apartments were always littered with her offcuts of boards.

“That’s how I paid for our own Christmases,” said Tania.

It wasn’t all work.

They’d go to Lochman’s beach to collect sea glass and managed summer trips to a campground in Baddeck where everyone knew and kept an eye out for Alexander.

“I never wanted the kids to feel Alexander was taking things away from them — we would just twerk whatever we were going to do to accommodate him,” said Tania.

“We’d avoid big crowds. But we still did what we could as a family.”

Billy, who had his own health issues, was still a part of that family, providing child care.

“He loved them dearly,” said Tania.

‘We wanted accountability’

Tania and Billy began pursuing legal action when Alexander was two years old.

“The purpose was never for money, praise or accolade,” said Tania.

“Alexander was going to need to be looked after. And we wanted accountability. Somebody needed to be held accountable.”

They couldn’t get a lawyer in Sydney to take on the case, so they approached Wagner’s Law Firm in Halifax.

It led to the lawsuit against Kajetanowicz, the Nova Scotia Health Authority and the IWK.

The latter two parties settled just before the three-week jury trial began in Sydney in 2019.

Friends, family, teachers, medical experts, Tania and Kajetanowicz took the stand.

A jury found him not liable.

An appeal was filed, fault was found with the charge the justice gave to the jury before deliberation and everyone was hauled back to court for it to be retried last year before a judge.

The arguments centred around whether Kajetanowicz failed to meet the standard of care when he didn’t double-check to ensure the IWK had contacted the doctors attending to Alexander.

Two long-tenured experts in neo-natal care testified that the imminent threat of harm to Alexander meant the standard of care demanded Kajetanowicz check to ensure they (his wife, Danuta Kajetanowicz and the family doctor) had been notified by the IWK.

“(Alexander) was already 13 days old.  as such, if confirmed to have congenital hypothyroidism, Alexander required urgent thyroid replacement therapy to prevent neurocognitive sequalae from this condition,” reads the report for the court prepared by Dr. Jaques Belik.

“Dr. Andrzej Kajetanowicz, as the only Physician reviewing Alexander’s thyroid screening result fell below standard of care for not pursuing immediate action to ensure that Alexander was further investigated and urgently treated for congenital hypothyroidism.”

Three other long-tenured experts in the field, meanwhile, said that as Alexander was not Kajetanowicz’s patient and as it stated on the blood test that a process for notifying the relevant doctors had been begun, and as by all accounts that process had always worked in the past, it would be an unreasonable standard of care to demand of the neonatologist.

“This leads the Court to consider whether there is evidence that what the Plaintiff’s experts say should have been done by the Defendant, ever had been done by a physician in Nova Scotia prior to 2008,” reads Justice Patrick Murray’s decision, published last week.
“The answer to that question appears to be a resounding, ‘no’.”

Justice Murray found that Kajetanowicz met the standard of care that could have been expected of him.

“It happens from a legal perspective, (my client) felt he had done no wrong and the court agreed,” said Brian Downie, lead lawyer for Kajetanowicz.

“That in no way alters his sense of compassion and feeling for Alexander MacNeil and his mother. I feel the same way. A result like this doesn’t make us jump for joy. There’s a little boy in Cape Breton and you never stop thinking about that, you never do.”

‘Two kinds of good’

Alexander MacNeil loves the water.

 He loves people.

And he loves his mother.

When Tania teases “Now you be good Alexander” he invariably responds, “Well, there’s two kinds of good.”

After the settlement with the IWK and Health Authority, Tania was able to buy a small bungalow on a quiet street outside Sydney.

There’s room for him to wander and neighbours who keep an eye out for him.

They’ve added a small apartment in the basement for if someday he needs a live-in caretaker.

“It’s been a long, hard road,” said Tania.

“But I have no regrets. I’ve done everything I can within my own means to make sure Alexander will be OK. I won’t be around forever.”

She’s had her own health struggles and is now on long-term disability.

Billy died unexpectedly in 2019.

Through the stress of recent years, she’d taken a break from her tole painting.

But with life opening up and Christmas coming, there’s a new pile of scrap pine growing out on the deck.

In the evenings, Alexander sits at his keyboard and figures out songs and jingles by ear — one of his latest is Sweet Home Alabama — as Tania paints snowmen and Santas in the dining room.