The worst week of Paul Battista and Cheryl Smith’s lives began with a middle-of-the-night text from their daughter.

Leah, 20, was in her third year at Queen’s University in Kingston.

“My back hurts so much,” she wrote to her mother after midnight on Oct. 26, 2017. “I’m crying. I don’t know what to do. I’m scared.”

Smith tried to troubleshoot with her daughter and suggested ways to ease her pain. “Thanks Mom … Wish y were here,” Leah wrote back.

The next day Leah struggled to take deep breaths. She spoke to both her parents by phone and said she would make an appointment with the campus doctor.

In the morning, Battista and Smith woke to another text from Leah. The pain had gotten worse, so she had gone to the ER with her roommates. But “apparently all is good,” Leah assured them. An x-ray of her chest was normal and the doctors discharged her with Tylenol and Advil.

That afternoon Leah was having more trouble breathing. She FaceTimed with her parents and they encouraged her to go back to the ER.

“Leah please don’t underreport the pain and difficulty u have been experiencing over the past 12-18 hours,” her father texted after the call. “U need to tell them u r only able to take v shallow breaths without severe pain.”

Leah was assessed at the hospital in Kingston and sent home again, this time with a Ventolin inhaler.

Neither Battista nor Smith nor the Emergency Room doctors who twice discharged her had any idea that Leah was actually in grave danger.

Blood clots, which likely formed in her legs, had traveled to her lungs, restricting her breathing.

Two days after her first visit to the ER and 36 hours after her second, Leah again returned to the hospital. This time she was in an ambulance, unconscious. She never woke up.

Leah died of a “massive pulmonary embolism” — blood clots in her lungs — according to the coroner’s report.

She had just started using a different birth control pill with a higher dose of estrogen one week before she texted her Mom about back pain. (Estrogen doesn’t cause blood clots, but it increases the risk for them.)

After five days in a coma, Leah was pronounced brain dead and her organs were donated.

Nearly two years later, her parents are still raw with grief, still coming to grips with their upended lives and how their only child was ripped from them so suddenly.

“She was our everything,” Battista says.

Mixed with their grief is anger and frustration about the care their daughter received. They are angrier still at what they see as the hospital’s unwillingness to address the mistakes that led to their daughter’s misdiagnosis.

The coroner’s summary of Leah’s treatment at the hospital shows the doctors did not follow widely accepted clinical guidelines for screening for pulmonary embolism. The coroner requested that the hospital conduct a “Quality of Care” review “particularly related to screening for pulmonary embolism.”

The hospital reviewed the death and made “no recommendations.”

“That, to me, is stunning,” Battista says. “How could nothing have been learned?”

A note in the coroner’s report says the case would also be reviewed by emergency department staff, but the hospital would not tell the Star whether this happened.

Battista and his wife, who are both 56 and live in Oakville, are suing the hospital and one of its nurses, as well as the doctors, for malpractice.

“If we had seen a process where there was true accountability … and an openness and willingness to learn from this catastrophe, then we would have totally taken a different tack,” Battista says.

The case is before the courts. None of the allegations have been proved.

The Kingston Health Sciences Centre and the doctors involved declined to answer questions. They have, however, filed separate statements of defence in which they deny any wrongdoing. Both groups of defendants have also filed crossclaims against each other.

The family’s lawyer, Richard Halpern, called the hospital’s response to Leah’s death “completely inadequate” and indicative of a larger problem across the province. “Hospitals aren’t prepared to learn from their mistakes,” he said. “And they’re sacrificing patient safety in the process.”

Battista and Smith say they received no communication from the hospital following their daughter’s death. The hospital didn’t express condolences, explain to them what happened in their daughter’s care or include them in any way in their internal review, they said.

Provincial legislation requires hospitals to offer to interview patients or their families following a critical incident — when treatment unintentionally results in death, serious disability or harm and when an underlying medical condition or other known risk is not the primary cause. The hospital appears not to have considered Leah’s death a critical incident, as it is defined in the legislation.

Battista, who is a senior partner at a Bay Street accounting firm, says the lawsuit is not about money. (Malpractice cases involving deaths of children with no dependents yield comparatively small financial awards, according to lawyers interviewed by the Star.)

“This isn’t a vengeance thing,” he says. “This is an accountability thing and a change thing.”

Battista and Smith believe a more stringent protocol for screening for pulmonary emboli would have saved their daughter’s life and, if implemented, could save others.

Experts in emergency medicine and thrombosis say more should be done to educate healthcare workers and the public about the signs and symptoms of blood clots, a condition that kills more people each year than breast cancer, HIV/AIDS and car accidents combined. But they also caution against the potential harms of over testing and say there is no simple solution to the diagnostic challenge of what’s sometimes called “the silent killer.”

A pulmonary embolism may, in general, be an elusive diagnosis, Halpern says, but it wasn’t in this case. “They had a second chance. They often don’t get a second chance.”

Smith says she knows the doctors were trying to help her daughter, but this was “a really obvious miss” and the hospital is “not really processing that somehow.”

Battista and Smith only ever wanted one child. “We decided to stop at perfection,” they would say to Leah when she asked why they didn’t have any more kids.

The three of them were especially tight knit, and their family life revolved around Leah. She could be shy when she was young, but she loved to sing and followed that passion to school musicals, Royal Conservatory awards and soloist competitions. She was a high-achieving student with aspirations to work in international development or any field where she thought she could make a difference.

“I’m not disparaging it, because I work there, but she wasn’t going to be on Bay Street,” Battista says.

What her parents and friends recall most about Leah are her quieter kindnesses. She was a good listener and empathetic, with a keen sense of when someone was having a bad day.

She often left little notes to her friends and parents, sneaking them under doors, tucking them into books. “We thought it was just for us, but we found out she did it with everyone,” her father says.

Whenever Battista went on a business trip, Leah hid notes in his luggage — sometimes several of them, individually dated for each day he would be away from home.

She spent her first year of university at Queen’s International Study Centre at Herstmonceux Castle in England. When her parents returned home from dropping her off at the airport they found notes hidden all over the house — on bedside tables, in medicine cabinets, tucked into tea canisters. One note still greets Battista every morning from inside his closet. “Smile Dad!”

At Herstmonceux, Leah met the group of friends that would become her roommates when she moved to Queen’s main campus in Kingston for second year in 2016.

“I thought she looked like Snow White,” says Henna Mohan, recalling the first time she met Leah. “She was so pale and had such dark hair and rosy cheeks.”

Leah lived with Mohan, Elyse Loewen and Kyra Safar in an apartment in Kingston, not far from campus. Looking back on that time, they say it was an idyllic undergrad experience. “It was like having a sleepover with my best friends every night,” Safar says.

The foursome was so close that it seemed only natural that when Leah needed to go to the ER late one Friday night in October 2017, they all went together.

It was “Halloweekend” — the weekend just before Halloween — and they were laughing about how everyone else was out partying while they were stuck in the ER in their pyjamas, sober. They were joking around in the waiting room, taking pictures.

“I don’t think any of us had any clue as to the severity of what was going on,” Mohan says.

Shortly after midnight, Leah saw Dr. Andrew Ross, a resident who was being supervised by Dr. Louise Rang. In his assessment, Dr. Ross noted Leah’s left-sided chest pain that worsened with deep breaths. The coroner’s report says she had an elevated heart rate — 108 beats per minute — and it was noted that she was using birth control. (The doctors’ statement of defence says Leah’s heart rate was 90 beats per minute at this first visit.) An x-ray of Leah’s chest was normal and she was discharged around 1 a.m. with over-the-counter painkillers and a diagnosis of “chest wall pain.”

The coroner’s report does not say whether Dr. Ross or Dr. Rang, who reviewed Leah’s chart but did not participate in her assessment, considered pulmonary embolism as a potential diagnosis.

“She came out. Everything seemed fine,” Mohan said.

What makes a pulmonary embolism so difficult to diagnose is that despite being potentially fatal, the symptoms are subtle and non-specific. Chest pain, shortness of breath. Sometimes a cough with a little blood. Sometimes recent leg pain or swelling. The presentation can be similar to far less serious problems, such as a cold or a muscle injury.

The most effective diagnostic tools — a computed tomography (CT) scan or ventilation-perfusion (VQ) scan — are expensive and expose patients to radiation. Other preventative measures, such as prophylactic blood thinners, which are often given to surgery patients, come with their own potential harms.

So doctors want to avoid these interventions. This has led to the development of several clinical prediction tools, which have proven effective at avoiding unnecessary tests while still catching the potentially deadly cases.

The “Wells Model for PE” is a list of seven criteria, each associated with a numerical score. A patient’s total score is used to determine their relative risk for a pulmonary embolism.

It’s not clear if Leah’s Wells’ score was calculated, but if it was she would have been considered low risk for a pulmonary embolism, based on the information in the coroner’s report. Clinical guidelines suggest the next step would be to use another clinical test — the Pulmonary Embolism Rule-Out Criteria (PERC), which is a list of eight criteria about the patient’s history and condition. If any of the criteria are present you can’t rule out a pulmonary embolism. Leah had two of the criteria. Her heart rate was above 100 and she was taking hormones via her oral contraceptive. At that point, the next step is an inexpensive blood test called a D-dimer, which, if negative, would rule out a pulmonary embolism. The downside of the D-dimer is that while it’s effective at ruling out a pulmonary embolism, it yields a high rate of false positives and can lead to a cascade of unnecessary and potentially harmful interventions. If a pulmonary embolism has not been ruled out and the D-dimer is positive, the next step would be a CT scan or VQ scan, which should catch the pulmonary embolism. If caught, a pulmonary embolism can be treated with blood thinners.

“The studies that we’ve done have showed that if you follow the algorithms that we’ve published, people do well,” says Dr. Phil Wells, chair of the Department of Medicine at the University of Ottawa and the creator of the Wells Model. “If you don’t follow the algorithms they do a lot worse.”

Just 13 hours after she was first discharged, Leah returned to the ER with her cousin, who was also a student at Queen’s. Her heart rate was now 116, her chest pain was worse and she was having more difficulty breathing.

Dr. Colin Mercer assessed her and ordered a Ventolin inhaler, which “provided some improvement” of her breathing capacity, according to the coroner’s report.

It appears from the coroner’s report that Dr. Mercer used the Pulmonary Embolism Rule-Out Criteria, as he noted in her chart he was “unable to PERC out due to tachy and OCP use.”

In other words, he couldn’t rule out a pulmonary embolism due to tachycardia — a heart rate of more than 100 beats per minute — and Leah’s use of an oral contraception pill.

Clinical guidelines published by Thrombosis Canada and the American Society of Hematology suggest a D-dimer blood test should have been ordered at this point.

“A D-Dimer blood test was not ordered,” the coroner’s report reads. “It was discussed that a Pulmonary Embolism was low risk and the likely alternative explanation for the symptoms was the recent viral respiratory infection.”

A history taken from Leah when she first visited the ER notes that she had cold symptoms, namely a cough, for six days, according to the coroner’s report.

Leah was discharged around 4:45 p.m. on Saturday.

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When the coroner requested the hospital conduct a “Quality of Care” review into Leah’s case it specifically asked the hospital to “review why further screening was not performed when (Leah’s) PERC screen could not rule out pulmonary embolism.”

The hospital declined to answer any questions about the review or how it screens for pulmonary emboli, and declined to say whether Dr. Mercer’s decision not to order a D-dimer was appropriate. Dr. Mercer, via his lawyer, declined to answer questions.

“Dr. Ross and Dr. Mercer carried out the assessment, diagnosis, and treatment of Ms. Battista in a careful, competent, and diligent manner,” reads the doctors’ statement of defence. The statement also says Dr. Rang was similarly “careful, competent and diligent” in her supervision of Dr. Ross.

Smith says that when she spoke to Leah on the phone after the second visit to the ER she asked if the doctor thought her symptoms could be related to her use of birth control. “(Leah) said, ‘I asked the doctor if it could be the pill and he said, no, it doesn’t manifest in this way.’”

Oral contraceptives are very safe and the chances of developing a fatal pulmonary embolism as a result of using birth control is extremely rare — about one in 100,000, said Dr. Ashley Waddington, assistant professor of obstetrics and gynaecology at Queen’s University.

For young women who are otherwise healthy, the risk of developing a blood clot is about 4 or 5 in 10,000. On birth control, the risk doubles. But women are at the greatest risk of developing blood clots when they’re pregnant, Waddington said. She added that women using oral contraceptives should know the signs and symptoms of blood clots (chest pain, light-headedness, shortness of breath, leg tenderness or swelling), but it’s important they don’t stop using their birth control without speaking to their doctor.

The next day, a Sunday, Leah’s mother traveled to Kingston. She brought Leah and her roommates a ready-made lasagna, changed the sheets on Leah’s bed and did what she could to make her feel more comfortable.

“I was just being a Mom,” says Smith, who works as a yoga instructor. “She had been in front of medical professionals twice in the past 36 hours. I was thinking the diagnosis is right. I wasn’t thinking I had a problem to solve.”

Leah said she was feeling better. She stuck a post-it note on her computer screen reminding her to cancel the doctor’s appointment she had scheduled for later in the week.

Leah asked her Mom if she wanted to stay and watch an episode of Gilmore Girls. “We would sometimes watch girly shows together,” Smith says, her voice breaking. Smith told her daughter she should probably hit the road because it was nearly 5 p.m.

Smith didn’t get back to Oakville until after 9 p.m. She texted Leah: “Love you my angel.”

“Love you too,” Leah wrote back, adding two heart emojis. “Thanks for coming.”

Sometime after 3 a.m., Leah’s roommates awoke to the sound of screaming. They were used to loud noise from the street and figured it must have been coming from outside the apartment.

But it was Leah, gasping in her bedroom. She managed to call 911 herself and then called the cell phone of her roommate, Kyra Safar, who says Leah just screamed into the phone. “No words. Just screaming. I said, ‘I’m coming.’”

Leah was on the floor, frantically repeating that she couldn’t breathe. Paramedics quickly arrived, loaded Leah onto a stretcher, and repeatedly asked her roommates if she had been using drugs. In the ambulance, Leah passed out and had a heart attack.

The roommates followed the ambulance to the hospital in an Uber. “It literally felt like a nightmare,” Mohan says. “I was paralyzed. I didn’t really understand what to do. It was just so shocking.”

Even then the roommates didn’t think Leah could die. “We knew it was bad, but I don’t think any of us were expecting it to be quite so bad,” Safar says.

In a private room, a doctor told them Leah may not survive. The doctor said to call Leah’s parents and have them come immediately.

Battista and Smith initially ignored the 5 a.m. calls, figuring it was a wrong number. But the phone kept ringing and eventually Smith picked up.

“Kyra said, ‘Leah has had a heart attack. The doctors want me to tell you she is alive. You have to come.’”

Smith, still in the fog of sleep, didn’t understand. “I was just there,” she said, repeating herself. “I was just there.”

She and her husband rushed out into the predawn darkness to make the three-hour drive.

“We get a half-mile down the road and I’m thinking, ‘It’s the pill! It’s the pill! It’s a blood clot!’”

Smith knew Leah was using birth control, but Leah didn’t want to share that with her father.

“So I’m explaining it to Paul, who’s hearing this for the first time. He’s trying to drive, but also going crazy, and we don’t have enough gas to get there and, of course, the engine light is coming on.”

It’s difficult for Battista and Smith to recount that night and the subsequent days in hospital with Leah on life support. There were occasional, fleeting signs that their daughter might wake up, but after five days in a coma she was pronounced brain dead.

Her family and friends who had kept vigil took turns saying goodbye.

It was only then that Battista and Smith learned their daughter had signed up to be an organ donor. Her liver and kidneys were transplanted into three different people. Her eyes were sent to an eye bank.

Hospitals are legally obligated to review any critical incident and develop a plan with “systemic steps to avoid or reduce the risk of further similar critical incidents.” They must include patients or their families in the review process by interviewing them, keeping them updated and by disclosing plans to prevent similar incidents.

That did not happen in this case because Kingston Health Sciences Centre, it seems, did not consider the circumstances of Leah’s death constituted a critical incident, as defined under the law. The hospital would not clarify if it considered Leah’s death a critical incident, citing patient privacy. A spokesperson’s statement reads, in part: “The legislative obligations in the Public Hospitals Act and regulations only apply to ‘critical incident’ reviews. They do not apply to other types of quality reviews in circumstances where there was no ‘critical incident.’ In other situations, the hospital has discretion to decide whether to involve the patient.”

Jeffrey Bagg, a lawyer for Ontario’s Patient Ombudsman who spoke to the Star generally and not about Leah’s case specifically, said errors of omission could still constitute a critical incident. “Things that should have happened that didn’t, most hospitals would treat that as a critical incident,” he said, as long as the other requirements of the definition are met.

Paul Harte, a Toronto lawyer who specializes in medical malpractice but is not involved in Battista and Smith’s case, said it’s difficult to believe the hospital found nothing it could improve after its review. Either there was an inadequate policy or the policy that was in place was not enforced, he said. “It is inexplicable why an apparently avoidable death would not result in some recommendations. The absence of recommendations simply invites another preventable death.”

Harte says how hospitals conduct Quality of Care reviews is “very inconsistent” across the province. “In my experience, hospitals that approach it with the greatest amount of transparency and the greatest involvement of the affected family members tend to have better results — fewer lawsuits and ultimately better quality of care.”

Battista wants the hospital — all hospitals — to establish a protocol whereby when someone presents with the same history and symptoms his daughter did, a D-dimer blood test is automatic. “These conditions exist, the test is done, full stop.”

He would also like to see the blood test included with the Pulmonary Embolism Rule-out Criteria, so when a doctor can’t “PERC out”, a D-dimer is mandatory.

That is already the recommendation in clinical guidelines, but doctors have discretion.

Dr. Wells, who spoke to the Star generally and not about the specifics of this case, said there is “a case to be made” for making proven clinical algorithms mandatory. But he also cautioned against the “overall harm” to the healthcare system of overtesting.

“I think we jump too easily to imaging or bloodwork and I’m a strong believer that we should be going down more of the path of predictive analytics to determine who goes on to get blood tests or to get imaging tests,” he said.

Halpern, Battista and Smith’s lawyer, says that even if the hospital believes its systems are sound and an individual doctor made a mistake, its response illustrates a larger problem. “The systemic problem is not translating these tragedies into improved patient safety.”

Battista finds it unbelievable that the doctors who misdiagnosed his daughter did not even have to undergo any additional training. “These doctors literally could have showed up the following weekend and went through whatever they went through with no learnings, with no developments, and a similar outcome could have occurred,” he says. “At the end of the day, the culpability, how much of it was this or that is kind of irrelevant. The point is you just can’t drive on.”

Leah’s parents cope with their daughter’s absence in different ways. Battista initially poured himself into planning an exuberant Celebration of Life, which was attended by more than 750 people at the Living Arts Centre in Mississauga. Lately he has been focusing on the foundation he and his wife launched earlier this year in Leah’s name. The foundation’s mission is to “improve, enrich and empower the lives of youth and the disadvantaged” in the areas of health, education, the arts and social capitalism, Battista said.

Smith can no longer stand the quiet so she keeps earbuds with her at all times so she can always plug into her phone for distraction. “I go through hundreds of podcasts.”

They have seen grief counsellors and attended mindfulness retreats. All of it has helped, but they still struggle to speak of Leah in the past tense. “It’s still shocking,” Smith says. “The idea that her space is gone.”

Battista has two recurring dreams about his daughter. They come less frequently now, but are no less vivid. In the first they’re together and he knows she’s going to die, but she doesn’t.

“Do I tell her? I don’t want to stress her. I don’t want her to be anxious. So do I just enjoy this time with her and have her be happy and smiling?”

In the second dream, Leah knows she’s going to die.

“We’re crying and we’re saying goodbye and we’re reveling in each other’s love.

“Those dreams are so real,” he says. “You wake up and you think that’s where you are, in the dream. You think she’s still here. And then you’re crushed. You wake up and come back to the reality of the quiet house and her room with the boxes and her clothes.”