Their 2-year-old daughter died in surgery. They had no idea the hospital was warned it couldn’t handle her case

It was just before dawn on a clear, slightly breezy Tuesday when a Danville couple checked their 2-year-old daughter in for surgery at John Muir Medical Center in Walnut Creek.

Three months had passed since the girl, Ailee, began saying, “Owie, tummy,” during a family trip to Las Vegas, leading to the discovery of a mass on her liver and a diagnosis of stage 4 cancer. On this day, doctors were planning to remove about half of the organ.

In researching the best care for Ailee, who was the youngest of their three girls, Tom and Truc-Co Jong had initially focused on Stanford’s prestigious children’s hospital in Palo Alto. But the couple discovered that John Muir Health, a community health system in Contra Costa County, had formed a multimillion-dollar partnership with Stanford to bring in pediatric doctors to treat more urgent and complex cases in the East Bay.

Doctors and hospital leaders at John Muir had assured the Jongs they could perform Ailee’s surgery there, giving them confidence that they would receive Stanford-level care 40 miles closer to home, the couple told The Chronicle.

In a pre-operative room, Ailee clutched one of the blankets that Tom and Truc-Co had used to swaddle her as an infant. The girl was never without what she called her “towel,” and at night her mother would tuck one under her chin before lying next to her and singing.

As an anesthesiologist administered Ailee’s medication around 7:30 a.m. on Nov. 12, 2019, Truc-Co squeezed her hand and told her to focus on a monitor displaying colorful stripes. Her daughter closed her eyes, and Truc-Co kissed her. I said, ‘Mommy loves you,’” she recalled, “and I let them take her and placed her in their hands.”

Within 10 hours, Ailee would be dead.

Truc-Co and Tom Jong hold a photo of their 2-year-old daughter, Ailee, who died on an operating table at John Muir Medical Center in Walnut Creek.

Brontë Wittpenn/The Chronicle

A Chronicle investigation has found that in the weeks before the surgery, John Muir Health leaders discounted warnings from their own staff that the hospital was not equipped to perform such a specialized operation, known as a liver resection. One of John Muir’s medical directors at the time said in an interview that she told a top hospital executive that the surgery would be a “clean kill.”

These allegations are reflected in a lawsuit the Jongs filed Wednesday in Contra Costa County Superior Court, seeking unspecified damages.

John Muir Health leaders, responding to The Chronicle’s reporting, said Ailee had been “frail” due to her illness and rounds of chemotherapy, was “provided extraordinary care,” and died despite “heroic attempts” to save her.

“Life-saving procedures on extremely ill patients are not always successful,” CEO Cal Knight and three other executives said in a statement. “This fact is most tragic when the patient is so young.”

John Muir’s decision to move forward with the surgery, and the legal fight that has emerged, raises questions about whether the hospital risked patient safety in pursuit of profit and prestige — an idea that the hospital leaders called “patently false.” While Stanford has a renowned pediatric liver surgical center, John Muir Health had never performed a liver resection on a child, according to current and former medical staff and the Jongs’ lawsuit.

Although the surgeon who performed Ailee’s procedure was from Stanford and had previously performed liver resections at its hospital, the lawsuit says the anesthesiologists wecurere not affiliated with Stanford and had only recently finished fellowships in pediatric anesthesiology.

John Muir did not disclose any of this when doctors discussed the surgical plan with the family, the Jongs told The Chronicle. And after Ailee’s death, reporters found, the hospital did not request that the county coroner autopsy her body, nor did it have her case evaluated by its internal Medical Executive Committee, which can take disciplinary action and implement new policies.

Liver resections on children are risky surgeries with high complication rates. The likelihood of dying in surgery or before discharge from the hospital, however, is very low, with studies showing some mortality rates under 2%.

In extensive interviews over three months, Tom and Truc-Co told The Chronicle that they had been desperate to understand what went wrong: how a devastating series of events, starting with Ailee’s diagnosis and a promise that she could be cured at John Muir Health, ended with their child’s blood all over an operating room, her body barely recognizable.

“People say that grief hits you in stages — that’s bullshit; it happens all at once,” Tom said. “But one of the hardest things has been not knowing what happened.”

At the request of John Muir Health, the Jongs signed a HIPAA release to allow the health system and Stanford to speak in detail about their daughter’s case. Both John Muir Health and Stanford then declined to make the executives and doctors involved in the case available for interviews.

In their three-page statement, John Muir leaders described the care team as composed of highly experienced surgeons and anesthesiologists who had taken concerns about the operation seriously. After Ailee died, they said, the case went through extensive internal reviews by John Muir physicians uninvolved with the surgery, who found “no concerns with the clinical care provided.” A separate “root cause analysis” conducted by an interdisciplinary team found the same.

John Muir did not respond to questions about why the case did not go before its Medical Executive Committee, which the Jongs’ lawsuit alleges would have been the appropriate authority “to review medical misconduct, medical gross failings, and harm to patients.”

A November 2019 investigation into Ailee’s death by the California Department of Public Health found that John Muir “did not violate any State and/or Federal laws or regulations.”

“Our pediatric program and affiliation with Stanford Children’s Health is driven by a single goal: ensuring parents in our community have immediate access to high-quality care for their children,” the John Muir statement says.

The leaders acknowledged that a former medical director, Dr. Alicia Kalamas, had questioned John Muir’s ability to perform Ailee’s surgery, but disputed that these questions were “alarms.”

“The clinical team performing the case, not Dr. Kalamas nor John Muir Health administrators, had the clinical expertise and knowledge of the patient and proposed intervention to make an informed, authoritative determination,” the executives said. “Such conversations with medical directors and physician leaders occur daily.”

For this story, reporters reviewed thousands of pages of medical records, handwritten notes, financial documents, state reports, coroner records, voicemails, text messages and emails. Court records include messages sent by Kalamas to CEO Knight and other hospital executives documenting her efforts to warn them that Ailee would die in surgery.

“The parents of Ailee Jong were told that JMH had the appropriate resources to care for their daughter,” Kalamas wrote to Knight on Aug. 13, 2021, almost two years after the surgery. The subject line of her email, which is contained in the family’s lawsuit, was “In memory of Ailee Jong.”

“That was deceitful and demonstrably false,” Kalamas wrote. “I begged several people at JMH to be honest and forthcoming with her parents and explain that JMH was NOT the appropriate place for their daughter to receive care.”

Kalamas sued John Muir Health in January after the hospital did not renew her contract, alleging retaliation for raising concerns over the safety of patients, including Ailee.

Hospital leaders have disputed her claims, saying they sought to take her department, which oversees surgical care for adults, in a different direction. They said Kalamas and her attorney, who also represents the Jongs, were “exploiting the tragic death of a young child to further their own personal financial interests.”

A nonprofit community health organization, John Muir has two medical centers in Walnut Creek and Concord and a network of more than 1,000 physicians. In 2019, the nonprofit, one of the largest private employers in Contra Costa County, recorded $1.67 billion in revenue, according to its last available public financial filing.

The hands Tom Jong holds an urn of his two-year-old daughter’s ashes while at his home in Danville, Calif. on Thursday, Feb. 17, 2022. Two years ago, Ailee was diagnosed with cancer and would need surgery. While she was expected to survive she died on the operating table at John Muir Medical Center in Walnut Creek. Both Truc-Co and Tom later discovered a doctor had been warning supervisors that the hospital was nowhere close to prepared to perform the surgery. Now, critics of the hospital are saying the surgery was done to push their new children’s specialty center despite senior nurses and anesthesiologists pulling themselves out of the surgery expressing concerns.

Brontë Wittpenn/The Chronicle

Drawn by her older sister, two-year-old Ailee Jong can be seen depicted as an angel inside of her in Danville, Calif. on Thursday, Feb. 17, 2022. Two years ago, Ailee was diagnosed with cancer and would need surgery. While she was expected to survive she died on the operating table at John Muir Medical Center in Walnut Creek. Both Truc-Co and Tom later discovered a doctor had been warning supervisors that the hospital was nowhere close to prepared to perform the surgery. Now, critics of the hospital are saying the surgery was done to push their new children’s specialty center despite senior nurses and anesthesiologists pulling themselves out of the surgery expressing concerns.

Brontë Wittpenn/The Chronicle

Tom Jong holds an urn of Ailee’s ashes. She is depicted as an angel in a drawing by her older sister that is displayed at the Jongs’ Danville home. Photos by Brontë Wittpenn/The Chronicle
Tom Jong holds an urn of Ailee’s ashes. She is depicted as an angel in a drawing by her older sister that is displayed at the Jongs’ Danville home. Photos by Brontë Wittpenn/The Chronicle

With the Jongs’ consent, The Chronicle asked five experts unaffiliated with John Muir Health — three pediatric liver surgeons and two pediatric anesthesiologists — to review Ailee’s medical record.

While their observations varied based on their areas of expertise, all who agreed to discuss the case said they had serious concerns about the care team’s decisions and identified what they called preventable errors. They said the medical record spoke to the inexperience of the team as a whole with this type of operation, and questioned why any hospital that had never performed a pediatric liver resection would boldly attempt such a delicate procedure.

“You have no moral ground to stand on doing this type of thing at this type of hospital,” said Dr. Riccardo Superina, surgical director of the pediatric liver transplant program at Lurie Children’s Hospital of Chicago and a professor at Northwestern University’s Feinberg School of Medicine. “It’s tragic.”

The Jongs allege in their lawsuit that John Muir took on the surgery to try to boost its reputation and vault the medical center into the big league of Bay Area children’s hospitals, a feat John Muir has been attempting since partnering with Stanford in 2012. They say John Muir leaders and Ailee’s medical team, seeking to make money and boost the hospital’s reputation, misrepresented John Muir’s capabilities and knowingly put the girl in an ultimately deadly situation.

The suit names the hospital, as well as Dr. Jeffrey Poage, medical director of pediatric surgical services at John Muir Health; Dr. Jay Michael Balagtas, Ailee’s pediatric oncologist; Dr. Thomas Hui, the lead surgeon in her liver operation; and Drs. Wayne Lee and Romerson Dimla, the anesthesiologists in the room. The suit claims that the anesthesiologists were inexperienced and made errors that ultimately led them to transfuse her with too much blood and kill her.

Both Lee and Dimla work for Medical Anesthesia Consultants in Walnut Creek, which contracts with John Muir Health. A spokesperson declined to comment specifically on Ailee’s case, but said the physicians who work for the company are skilled and extensively trained “to deliver excellent patient care.”

The Jongs’ lawyer, Daniel Horowitz, dismissed the finding by the state Department of Public Health, saying an investigation by that agency typically would not review potential “malpractice or misrepresentation.” Health department representatives did not respond to a request for comment about their review of Ailee’s case.

According to the lawsuit, Ailee’s death was one of at least three avoidable child deaths at John Muir in the seven years since the hospital opened its pediatric intensive care unit. Hospital executives did not respond to The Chronicle’s questions about these deaths.

The Jongs told The Chronicle that when they met with John Muir doctors in December 2019, the doctors said they didn’t know why Ailee had died. After The Chronicle published an article about Kalamas’ lawsuit in January — which referred to a child who had died in surgery — the couple reached out to Horowitz and began to prepare the suit filed this week.

“Had I known that anyone at the hospital had concerns about their ability to do that surgery,” Tom Jong said, “there is no chance I would have done it there.”

Tom and Truc-Co Jong always knew they wanted a third child.

They began trying soon after moving to Sunnyvale from Vancouver in 2012 with their two daughters. Tom, then 36, had taken a job at a big tech company, and they had left their parents and siblings behind in Canada. Truc-Co, then 34, became pregnant but had a miscarriage, then another. They gave up.

Then in March 2016, Truc-Co became pregnant with Ailee. They moved into a bigger home in Danville with a fenced backyard. On the morning of Nov. 29, 2016, Truc-Co gave birth to a 5-pound, 9-ounce baby girl. Ailee had arrived a month early.

“Our miracle baby,” said Truc-Co.

They pronounced her name “EYE-lee,” because in Mandarin, Tom’s first language, ài means love. She had dark brown eyes, short black hair and round cheeks that reminded them of her father. She came to love fish, especially the characters from “Finding Nemo” and “Finding Dory,” watching the movies over and over in her favorite fish shirt and her sister’s swim goggles.

In the summer of 2019, when Ailee was 2, Tom and Truc-Co took her and their middle daughter, who was celebrating her ninth birthday, to a Las Vegas resort to float on a lazy river. Her eldest sister, then 19, had decided to stay home.

An image of the tumor on 2-year-old Ailee Jong’s liver two months after her diagnosis.

Provided by the Jong family

But soon after they arrived in Vegas on Aug. 4, Ailee complained that her stomach hurt, while pointing to her right side. She soon stopped eating and refused to walk. At a Las Vegas emergency room, doctors who reviewed a CT scan of Ailee’s abdomen and pelvis told Tom and Truc-Co, “You should probably have a seat.”

The doctors showed the Jongs Ailee’s scans on a monitor, explaining they had found a mass on her liver, roughly 12 centimeters wide, and smaller masses in her lungs. The girl appeared to have a form of childhood liver cancer, hepatoblastoma, that is diagnosed in about 1 in 1 million toddlers every year. It had likely spread to her lungs.

That night, after Ailee and her sister went to sleep, Tom and Truc-Co stayed up reading on their phones, searching for information on treatments, survival rates and Bay Area specialists in pediatric cancer.

Tom looked at UCSF Benioff Children’s Hospital in Oakland and Stanford’s Lucile Packard Children’s Hospital in Palo Alto, two of the most prestigious children’s hospitals in the Bay Area. But as he scrolled through a list of Stanford’s pediatric oncologists, he noticed that one, Balagtas, also worked out of John Muir Medical Center in Walnut Creek, 15 miles from their Danville home.

In a video on the Stanford website, Balagtas talks about parties he has thrown for children who complete chemotherapy, telling parents, “It’s basically like their second birthday. It’s basically like a second lease on life.”

The next morning, Tom called Balagtas at John Muir. The doctor said he could meet the Jongs in Walnut Creek the day after they landed.

Balagtas did not respond to calls and emails from The Chronicle seeking comment, and John Muir Health did not make him available for an interview.

“I just remember thinking how fortunate we were to find that we could have Stanford care so close to our home,” Tom said. “It was the Stanford brand, and the halo around that brand, that attracted us to John Muir.”

The partnership between John Muir and Stanford began with parents like the Jongs in mind.

For years, John Muir had sought to compete with Kaiser Permanente, the behemoth health system also operating in the East Bay. Around 2008, both of John Muir’s medical centers underwent sweeping expansions and updates. The $612 million rebuild of the Walnut Creek campus featured a 16-bed pediatric complex care unit as well as a 35-bed neonatal intensive care unit.

The pediatric facility opened in April 2011, the same month Cal Knight arrived as CEO. But its leaders later acknowledged that it had problems attracting pediatric specialists.

An aerial view shows John Muir Medical Center in Walnut Creek, where Ailee Jong, 2, died on an operating table.

Brontë Wittpenn/The Chronicle

“My marching orders, when I got here, from the board, were, ‘Cal, keep John Muir Health independent and locally governed,’” Knight said in an interview recorded on video last year with U.S. Rep. Mark DeSaulnier, D-Concord. “For us, the answer has been partnerships with other institutions.”

In 2012, John Muir and Stanford Children’s Health announced a partnership that would boost John Muir’s pediatric program by staffing it with Stanford physicians. The alliance would be run through a limited liability company with its own budget and operating plan.

Few details were disclosed. But the idea was to expand Stanford’s footprint in the Bay Area while drawing more pediatric patients “with conditions ranging from allergies or bed wetting to more complex illnesses” to John Muir, an October 2012 press release stated.

Although the specialist doctors would be from Stanford, other staff on the care teams, such as nurses and anesthesiologists, could be from John Muir. Executives told reporters that John Muir would still send the most complex surgeries to Stanford.

Then, in 2015, the health organizations opened a $10 million, eight-bed pediatric intensive care unit at the Walnut Creek campus, the first in Contra Costa County.

John Muir expected to bring in more Stanford specialists and hire about 30 people to provide care for more severe conditions and complex surgeries at the Walnut Creek PICU. But between 2016 and 2018, the majority of reported pediatric operations at John Muir were relatively simple procedures on appendixes or broken bones, according to hospital data sent to the California Department of Public Health, cataloguing more than two dozen types of surgeries.

In contrast, from 2016 through 2018, Stanford’s children’s hospital reported performing hundreds of operations that experts said are generally more complicated and high-risk, including nearly 200 operations on the bile ducts, pancreas or liver — more than one a week.

By the beginning of 2019, doctors at John Muir had reported just two surgeries on the bile ducts, pancreas or liver of children. Neither of these, according to current and former John Muir medical staff who spoke with The Chronicle, was a liver resection.

The Jongs arrived at John Muir’s Walnut Creek hospital for the first time on Aug. 9, 2019. They were impressed, they recalled, as they walked through a sunlit atrium with a large fish tank and a grand piano.

While Truc-Co stayed with Ailee, Tom met with Balagtas and Hui, a general pediatric surgeon with Stanford Children’s Health. The doctors explained that Ailee’s treatment would require aggressive chemotherapy, followed by the removal of the right half of her liver.

Reached by phone for this article, Hui told a reporter he was in surgery. He did not respond to subsequent emails, calls or text messages. John Muir Health did not make Hui available for an interview.

Tom said he asked if the doctors had everything they needed to treat her in Walnut Creek. Tom recalled that Hui told him he had successfully performed liver resections at Stanford and at UCSF Benioff Children’s Hospital in Oakland, including a recent liver resection in Oakland on a child younger than Ailee with the same type of cancer.

“They did say, in these words: ‘We can treat her. She can be cured,’” Tom said.

Balagtas wrote in Ailee’s medical record that he “discussed the possibility of transfer to CHO (Children’s Hospital Oakland) or LPCH (Lucile Packard Children’s Hospital) for enrollment in the clinical trial.”

“But family would prefer to stay here at John Muir,” the doctor wrote, “as they live close by and are comfortable with the plan as discussed.”

Dr. Alicia Kalamas at her home in Piedmont. Kalamas worked at John Muir Health and warned that the Walnut Creek hospital was not prepared for the surgery performed on 2-year-old Ailee Jong.

Brontë Wittpenn/The Chronicle

It was 11 weeks later when Kalamas phoned into John Muir’s quarterly call for anesthesia medical directors, expecting to hear the usual updates from different leaders within the community hospital system.

But minutes into the call, Poage, John Muir’s medical director of pediatric surgical services, announced “a big liver resection” on a young child with hepatoblastoma, Kalamas recalled.

She said she immediately interrupted: “I’m not sure we’re equipped to do this.”

In 2013, John Muir Health had recruited Kalamas from UCSF — where she’d spent a decade after completing her medical degree, internship and residency there — to become the medical director of its perioperative medicine program. She specialized in anesthesiology with a focus on perioperative medicine, which refers to scientifically controlled and properly managed care before, during and after surgery.

John Muir brought her on to address the hospital’s higher-than-average post-surgical complication rates, according to Kalamas’ lawsuit.

For years, Kalamas had worked at UCSF, where doctors regularly perform complicated pediatric liver surgeries. She knew it wasn’t only the surgeon who needed to be experienced: Of critical importance was the anesthesia team that administers medication to keep patients unconscious and decides when and how to give blood transfusions to a patient who bleeds, according to Kalamas, the Jongs’ lawsuit and the experts who spoke with The Chronicle.

Operating on the liver — a fragile organ, formed by intersecting blood vessels and tissue, that filters and cleans blood — always poses a bleeding risk, experts said. If an anesthesia team transfuses too little blood, a patient can go into shock. Given too much blood, or the wrong combination of red blood cells and cells and proteins that help the blood to clot, a patient can hemorrhage.

Red blood cells can also contain high levels of potassium, which can cause a patient’s heart to stop and make it impossible to manually restart, experts said. In young children, imbalances can be catastrophic because they are smaller, with significantly less blood than adults.

On the call, Poage responded decisively, Kalamas recalled, saying, “I think we’re ready.” She said he added that John Muir had been “preparing for something like this.”

Poage did not respond to calls and emails from The Chronicle seeking comment. John Muir Health declined to make him available for an interview.

Kalamas grabbed her cell phone and texted a John Muir colleague. “Would you ever let your kid have a hepatectomy at JMH?” Kalamas wrote at 4:59 p.m. on Oct. 28, in text messages reviewed by The Chronicle. “There is no way in hell I would. Pediatric ICU has never seen this before.”

“Many things can go wrong with this,” her colleague texted back, later adding that such an operation was best handled by a specialized academic hospital. “I don’t think it’s our place to compete with them in this arena,” the colleague wrote.

Kalamas shared the text messages on the condition that The Chronicle not identify her former colleague. The former colleague did not respond to requests seeking comment.

In the next few days, Kalamas said, she spoke privately about her concerns to Poage and Dr. Thomas Greely, her direct supervisor and the vice president of clinical affairs at John Muir Health. She said she told them that at UCSF, only elite care teams she likened to “Navy SEALs” did such surgeries.

She said both Poage and Greely told her that their partners at Stanford thought they could do the surgery. Kalamas said they didn’t specify whom they had consulted. Representatives for Stanford declined to comment.

Kalamas said she told Greely over the phone that she knew John Muir Health could not do the surgery. She said she told him that it was deceitful to tell the parents otherwise and that it would be a “clean kill” if they moved forward.

Reached by phone, Greely, who no longer works for John Muir, declined to comment. He is not named as a defendant in the Jongs’ lawsuit.

Kalamas later documented these conversations in emails to John Muir executives, which The Chronicle reviewed and which are included as exhibits in both her lawsuit and the Jongs’ suit.

On Feb. 27, 2021, she wrote to Dr. Moussa Yazbeck, then-chief of staff at the Walnut Creek hospital, saying she had spoken to Greely “on at least 3 separate occasions” and had urged him not to take the case. She wrote that she had laid out arguments to medical leadership that “death was a likely outcome” if they moved forward with the surgery.

Yazbeck, reached by phone, declined to comment and directed reporters to John Muir Health. He is not named as a defendant in the Jongs’ lawsuit.

In May 2021, John Muir Health declined to renew Kalamas’ contract.

In their statement to reporters this week, John Muir executives attacked Kalamas, calling her account “a fabrication” to bolster her lawsuit against the hospital for declining to renew her contract.

Still, they said the executives she contacted “took her inquiry seriously.” They told Kalamas that they believed “that all resources required were readily available at John Muir Health.”

“Dr. Kalamas did not elevate the matter or express further concerns before the surgery,” according to the statement. “Nor did anyone else.”

The Jongs’ civil suit, however, contends that Kalamas wasn’t the only member of John Muir’s staff to raise concerns in advance of the surgery.

Nurses asked to staff the procedure expressed “a barrage of objections” that the hospital was moving forward with the operation and refused to participate, stating “that it could not and should not be done,” according to the 67-page complaint. The lawsuit didn’t specify when those warnings occurred and to whom they were directed.

Moreover, the suit alleges that Poage — the top pediatric anesthesiologist — pulled out of the procedure “because he knew that he was not qualified.”

The Jongs told The Chronicle that Poage had indicated he would be Ailee’s anesthesiologist in the operating room, describing how he would handle his role in her surgery.

But less than a week before the operation, the Jongs said, Balagtas told them that Poage couldn’t be there because of a scheduling conflict. A day before the surgery, the Jongs said, anesthesiologists Lee and Dimla, who had both administered anesthesia to Ailee during her previous scans, told them they would step in.

While John Muir executives said they were ready for the complex surgery, the Jongs’ lawsuit alleges that the hospital’s pediatrics program had been struggling for years, pointing to two previous child deaths since 2015.

The children died at John Muir’s PICU with conditions that if treated at Children’s Hospital Oakland or other facilities would not have resulted in death, according to the lawsuit. “One death was from an asthma attack and another from a problem related to diabetes,” the complaint states, noting that John Muir had to hire an outside entity to review the unit because of the deaths.

Ailee’s surgery offered a high-profile case to legitimize the program and woo future patients of all kinds and donor funds, according to the Jongs’ lawsuit. The potential upsides were enough, he argues, for hospital leaders to ignore the concerns raised by their staff.

John Muir Health executives, in their statement to The Chronicle, said their partnership with Stanford has benefited thousands of patients and families in the past decade.

John Muir defended its PICU program, saying its treatment teams perform several hundred pediatric surgeries every year, including a significant portion involving “acutely ill inpatients.” John Muir’s PICU’s readmission and mortality rates, the executives said, “consistently rank superior to our peers.”

They provided data showing a relatively low mortality rate compared to 18 hospitals with small PICUs, or those with 14 or fewer beds. John Muir’s unit has eight.

On Nov. 1, 2019, 11 days before Ailee’s surgery, the Jongs said they ran into Hui, the pediatric surgeon, while at the hospital for a CT scan in advance of the operation. Ailee had finished her chemotherapy a week earlier. Tom and Truc-Co told The Chronicle that they informed Hui they were feeling nervous about the surgery, an exchange the Jongs also described in their lawsuit.

Hui’s response to their fears, the Jongs said, was succinct and self-assured: “I can do this with my eyes closed.”

In a pre-operative room on Nov. 12, Ailee clutched one of her blankets. Her mother held her hand. Lee, one of the anesthesiologists, began administering anesthesia for her surgery around 7:30 a.m.

Lee had completed a fellowship in pediatric anesthesiology at Johns Hopkins Hospital in Baltimore in 2017, while Dimla had completed his pediatric anesthesiology fellowship at Children’s Hospital of Los Angeles in 2019, according to credentials listed on Medical Anesthesia Consultants’ website.

Ailee fell asleep.

She was wheeled into Operating Room 10. The Jongs said Hui had told them he expected to have Ailee out of surgery around noon.

At 9:09 a.m., Hui cut into Ailee’s abdomen and began isolating her liver from the rest of her organs and main blood vessels, according to Ailee’s medical record. Dr. Wendy Su, a pediatric general surgeon from Stanford, assisted.

Reached by phone, Su declined to comment. She is not named as a defendant in the Jongs’ lawsuit.

The anesthesiologists documented a request by Hui to keep Ailee’s blood pressure “low-normal” to reduce the risk of blood loss. Children of Ailee’s size, about 24 pounds, have roughly 800 milliliters of blood in their bodies.

Hui later notified the anesthesiologists that he would be cutting into Ailee’s liver. The anesthesiologists were already transfusing the girl with red blood cells “in anticipation of some bleeding” during the resection, according to her medical record.

After a patient loses a significant amount of blood, anesthesiologists are generally supposed to replace the blood components in a fixed ratio, using a roughly 1-1-1 ratio of red blood cells, plasma — which contains proteins that help blood to clot — and platelets, which are tiny cells that also help with clotting, experts told The Chronicle.

From 9:30 a.m. to about noon, the anesthesiologists estimated that Ailee lost 345 milliliters of blood, or about 40% of her total blood volume, according to the medical record.

In approximately the same period of time, the anesthesiologists gave her four units (1,261 milliliters) of “packed red blood cells” and one unit (222 milliliters) of “fresh frozen plasma” — more than 4 times the amount of blood she had lost, and a 4-to-1 ratio of red blood cells to plasma. It is not clear whether Ailee received platelets during this period.

Ailee’s temperature at times dipped below 95 degrees, bordering on hypothermia, which could have made it even harder for her blood to clot on its own. At very cold temperatures, experts told The Chronicle, the cells and proteins that help the blood to clot don’t work as well.

Ailee’s potassium also had risen from about 4 millimoles per liter of blood to 5.6, according to the medical record. Levels around 7 or 8 can be fatal, causing the heart to stop and making it impossible for a surgical team to manually restart it, experts said.

The surgeons, Hui and Su, continued with the procedure, suturing and tying off blood vessels so they could remove the right part of Ailee’s liver. At about 12:10 p.m., as they tied off and clipped portions of the hepatic vein, a large vein in the liver, Ailee’s heart rate plummeted, a condition known as bradycardia.

Then her heart stopped.

Medical staff immediately began chest compressions and injected Ailee with epinephrine to restart her heart, according to records.

Balagtas, the Stanford pediatric oncologist, wrote in Ailee’s medical record that he was called to the operating room around 12:20 p.m. as the team tried to resuscitate Ailee. Upon arrival, he would later write, he was “informed that patient was having bleeding from the surgical site” and that a vascular surgeon, a doctor who specializes in blood vessels, had been called.

Hui’s surgical notes from this time, however, state that “there was no significant bleeding from the abdomen to account for the sudden bradycardia and cardiac arrest.”

It is unclear whether this represents a discrepancy: Balagtas’ note does not specify exactly when he arrived at the operating room.

In any event, the anesthesiologists initiated a massive transfusion protocol after Ailee’s heart stopped, pumping in more red blood cells and other cells and proteins that help with clotting.

Around 12:30 p.m., Ailee’s “heart beat recovered with recovery of her circulation,” according to her medical record. An echocardiogram, which uses ultrasound to see whether a clot or a large air bubble, known as an embolism, has caused the heart to stop, detected no air bubble and showed that Ailee’s heart was beating normally.

The surgeons continued with the liver resection.

Shortly afterward, the anesthesiologists noticed blood coming from Ailee’s breathing tube, mouth and nose, suggesting widespread hemorrhaging.

By 12:32 p.m. Ailee’s blood potassium levels had jumped to 8.2 millimoles per liter, jeopardizing the ability of her heart to keep pumping, experts told The Chronicle.

About 15 minutes later, her heart stopped again.

According to the lawsuit, a nurse who saw that the team was losing control of the procedure found Poage, the medical director of pediatric surgical services, and “begged him to come to the OR,” but he refused.

Over the next several hours, the surgical team struggled to keep Ailee alive.

Her heart started again. However, the record indicates she was bleeding profusely, her blood unable to effectively clot. As the anesthesiologists attempted to treat Ailee’s high potassium levels, they also gave her more red blood cells and clotting cells and proteins.

It is unclear exactly how much blood Ailee lost after noon because the anesthesia team appeared to stop documenting those numbers.

Dr. Niren Angle, the vascular surgeon who was called into the room, told The Chronicle in an interview that he had just finished a surgery and was walking down the hallway when a nurse grabbed his arm and pulled him toward Operating Room 10.

“You need to go in there,” he recalled the nurse saying. “They need you.”

Angle said he didn’t recall what time he entered the room, but he could tell the situation was critical: The room was full of medical staff members, and they needed help finding out why Ailee was bleeding from the surgical site.

“It wasn’t anything torrential,” Angle told The Chronicle, “but it wasn’t inconsequential, either.”

Angle said he and Hui eventually located the source, which he identified in Ailee’s medical record as a site in the vena cava, the largest vein in the body. The location, Angle told The Chronicle, has a “treacherous” reputation for dangerous bleeds.

Angle estimated that he was in the room for 15 to 30 minutes as they sutured the opening.

Hui wrote in Ailee’s medical record that he quickly completed the liver resection but noticed blood coming from the site where he had secured the right hepatic vein. He wrote that he suspected that a suture or clip had come off during chest compressions, and said they were able to suture the site and stop the bleeding immediately.

Ailee’s heart stopped again. All attention turned to resuscitating her.

Balagtas contacted blood specialists at Stanford and Sutter Health for advice, asking them if there was anything else the surgical team could give Ailee to help her blood clot. But the calls yielded no solution, according to the medical record.

The surgical team stopped documenting the medications they were giving Ailee because of how fast everyone was working, according to the anesthesia notes. Hours passed.

Tom and Truc-Co Jong waited in a tiny, windowless pre-op room. Eventually, the metal door latch clicked open, and Balagtas and a small group of doctors and nurses walked in, looking somber.

“There’s nothing more we can do,” the Jongs recall Balagtas saying.

He then asked if the team could stop CPR.

“No,” Tom replied.

The Jongs insisted on seeing their daughter. The doctors told them that went against protocol. They said they would not let her die in a room full of strangers. They could not make such a massive decision, to let doctors stop CPR, while sitting in an old chair in a stuffy, windowless room.

“You said you’ve tried everything,” Tom recalled telling the doctors. “Well, you haven’t tried everything, because we haven’t been in there.”

The couple was escorted toward Operating Room 10. A nurse opened a door. Another nurse was doing chest compressions on Ailee, the Jongs said. In the center of the floor sat a mountain of blood-soaked towels, about 3 feet high.

Tom thought back to when water had gushed out of a pipe he was trying to fix in his shower. He hadn’t used nearly as many towels to soak up all that water, he thought.

Someone shouted, “No, no, no, no!” Staff members closed the door and brought the couple through a different entrance. It led to a part of the room that appeared to have been hastily cleaned, the Jongs said.

An attendant was pushing another pile of bloody towels toward a corner. The floor, streaked with blood, felt slippery. And the room smelled of blood.

“I don’t know how to describe it,” said Tom, crying at the memory. “It was just a weird, terrible smell.”

The room was still except for a nurse doing chest compressions on Ailee. When Tom and Truc-Co reached their daughter’s bedside, they couldn’t recognize her. Her head was swollen and appeared purple, black and blue. Her brown eyes were taped shut, and blood seeped out of them. It leaked from her ears, nose and mouth, too.

They recognized their daughter only by her hair, which had thinned from chemotherapy, and the dimples on the knuckles of her hands.

Tom scanned the room. At least two dozen doctors and nurses stood looking at the Jongs, frozen, as the one nurse continued compressions.

Tom said he saw Su, the assistant surgeon, behind Ailee, crying as she combed the girl’s hair with her fingers.

Ailee’s father lost his temper. “What are you guys doing in here?” he shouted. “I don’t need to be a doctor to know that this isn’t right! There’s a century worth of expertise and education and knowledge in this room. Do something! Why are you just standing there? Do something!”

“There’s nothing we can do,” someone said.

“There’s always something you can do,” Tom said. “Tell me, what can you do?”

“Pray,” another person said.

Tom and Truc-Co grasped Ailee’s hands. Maybe if she heard my voice, Tom thought, and felt her mother’s hand, that would trigger something. A miracle maybe.

Tom asked if they could give her something to jolt her heart. The staff gave Ailee some sort of injection.

“Now baby, jump for daddy! Jump! Come on, just, just a little bit!” Tom urged, holding her hand. “You know we love you! We’re giving you some turbo!”

Nothing.

After five hours of almost constant CPR, she was gone. The Jongs left the room. Hui called her time of death at 5:12 p.m.

Liver surgery is among the most complex and demanding of all surgeries, often requiring a team of advanced specialists, according to experts who spoke with The Chronicle. At pediatric liver centers, specialized teams of surgeons, anesthesiologists and nurses regularly perform liver surgeries together, often several times a month.

“That’s all we do,” said Superina, the liver surgeon at Lurie Children’s Hospital in Chicago. “Throughout my entire career I have been advocating for specialized people to do these cases. You are playing with people’s lives, kids’ lives, and it has been shown time and again that the level of expertise is mirrored in the outcomes.”

Four of the five experts in liver surgery or pediatric anesthesia who reviewed Ailee’s medical record agreed to speak directly to her case. Each offered differing theories on what went wrong, but all took issue either with how the surgery was conducted or with the hospital or surgical team’s experience with complex liver surgeries.

They said it was impossible to be 100% certain what had happened in the operating room at some key points because the medical record itself gives an incomplete picture.

All four said Ailee’s record indicates that an embolism, or air bubble, was one of the most likely reasons that her heart stopped the first time. They noted that the anesthesia team, at the request of Hui, the lead surgeon, intentionally kept the pressure in Ailee’s veins low, a common technique meant to reduce potential bleeding. However, they said, it also increases the chances of an embolism.

Dr. Amy Hogge, a pediatric anesthesiologist at Children’s Health in Dallas, declined to comment specifically on Ailee’s case, but said potassium levels around 5 or 6 millimoles per liter should prompt a serious and urgent conversation with the surgeon about treatment options. If a patient’s blood potassium continued to rise to 8 millimoles per liter, Hogge said, the surgical team would need to consider halting the operation.

Truc-Co Jong prepares to place a plant called angel wings in a garden dedicated to her daughter Ailee at her home in Danville.

Brontë Wittpenn/The Chronicle

“At those levels your heart stops and cannot be restarted,” she said. “At some point you have to decide if this is a continuable situation.”

The Jongs’ lawsuit focuses on alleged mistakes by the anesthesia team that several of the liver surgeons and anesthesiologists who spoke with The Chronicle also flagged.

The experts said they were concerned that the anesthesia team gave Ailee an enormous amount of red blood cells relative to what she had lost before her heart stopped the first time. They said the anesthesiologists gave her relatively little plasma to help her blood clot, setting her up to bleed more.

Then they initiated the massive transfusion protocol, the rapid transfer of even more red blood cells, plasma and other clotting products.

Dr. Andrew Matisoff, a Washington, D.C.-area pediatric cardiac anesthesiologist with significant liver surgery experience, called the resuscitation efforts “heroic,” but also questioned the amount of red blood cells used.

“Over-transfused blood could have contributed to the high potassium,” Matisoff said. “It seems like a lot of blood given to a child who only weighs 11 kilos (24 pounds).”

Even if Ailee had lost enough blood to justify the huge transfusion before her heart first stopped, the team should have been giving her more equivalent amounts of red blood cells and plasma to ensure her blood would be able to clot, said Dr. James Michael Millis, an expert in pediatric and adult liver transplantation surgery and liver resections at the University of Chicago Medicine and the vice chair of global surgery at the University of Chicago.

Millis referred to the account in the medical record that anesthesiologists gave Ailee 4 times more red blood cells than fresh frozen plasma before her heart stopped for the first time.

“This suggests to me,” he said, “that the anesthesia team was not experienced in dealing with patients with significant blood loss in liver surgeries.”

All the experts who spoke with The Chronicle said that when surgeries go wrong, teams at pediatric liver centers are often able to react more quickly because they are more familiar with the procedure and how to troubleshoot problems.

“If my child was needing it, I’d select one who does it frequently versus one doing their first one,” Matisoff said. “With a team doing it over and over again, they tend to have a better reaction when an acute situation occurs.”

In the Jongs’ complaint, Horowitz alleges that the John Muir team’s lack of experience led to a foreseeable tragedy in the operating room, with the anesthesia team panicking and transfusing Ailee with huge amounts of blood that caused her blood chemistry to go “wildly out of control.”

“By 12:32 p.m., Ailee was massively poisoned by the anesthesiologists,” the lawsuit states.

A spokesperson for Medical Anesthesia Consultants did not respond to The Chronicle’s questions about Ailee’s procedure, saying the company could not comment “out of respect for patient privacy” but extends “heartfelt condolences to the Jong family.”

John Muir executives did not respond to The Chronicle’s specific questions about Ailee’s medical record and the decisions made during her surgery. They pointed to the internal probes and state report. They said their staff “rendered tremendous care to a very sick child” and were being “unfairly maligned.”

After doctors ceased chest compressions on the girl, the Jongs were led back into the waiting room.

The doctors came in, some crying as they tried to console the couple, Tom and Truc-Co said. Hui bowed his head. Poage, composed and soft-spoken, told them they could see their daughter’s body, but that doctors couldn’t close her abdomen because it was standard for patients who died in the operating room to be autopsied.

In a pediatric ICU room, the couple sat with Ailee’s body for hours. By 9 p.m., they headed for the hospital exit, knowing they needed to go home and tell their daughters. They walked down a brightly lit hallway alone, pushing Ailee’s empty stroller.

Eighteen minutes after Ailee died, John Muir Health reported her death to the Contra Costa County Coroner’s Office, according to a mortuary release form included in the girl’s medical records. A nurse had filled out the form, indicating that Hui had requested an autopsy. In the space for the nurse to sign, however, there was no signature.

Before the Jongs left the hospital, Tom recalled, Hui told them he did not know why Ailee had died and left him with the impression that her body could not be autopsied because it was too damaged — contradicting what Poage told them.

Had the Jongs been offered an autopsy, Tom said he would have consented.

“We would’ve liked to have answers,” he said. “I definitely would have said yes.”

A second, nearly identical mortuary release form appears in the records. On this form, Hui’s request for an autopsy was crossed out by a nursing supervisor, who wrote “error” and signed the form.

A Contra Costa County coroner’s deputy confirmed that Ailee was never autopsied. Jimmy Lee, an agency spokesperson, said he could not talk about individual cases, but said hospital deaths under the care of a doctor “commonly do not meet coroner’s division criteria.”

The department’s main function is to investigate all sudden, violent, unusual and unattended deaths, he said.

Ailee’s case merited an autopsy, said Dr. Harold Sanchez, assistant professor of pathology at Yale School of Medicine and director of the school’s autopsy service. “This kind of case would really, really benefit from an autopsy,” he told The Chronicle. “If they did find some unnecessary complication, everybody could learn from this.”

Sanchez also disputed the notion that Ailee’s body could have been too damaged to perform an autopsy.

“That’s just not the case. I can’t imagine such a thing,” Sanchez said. “Medical examiners do autopsies on human remains all the time in much worse shape.”

John Muir executives did not respond to questions about their autopsy policy and how doctors reached their decision in this case.

Nationwide, autopsies have dramatically declined, from 19.3% of deaths in 1972 to 7.4% in 2020, federal figures show. It’s unclear what share of deaths at John Muir lead to autopsies; Jimmy Lee said the coroner’s office cannot sort cases by place of death.

At most community hospitals, autopsy rates are 5% or less, Sanchez said. At his hospital, 15% of deaths are autopsied. Yale’s policy is to offer an autopsy to every family who has a loved one die at the facility, Sanchez said.

Numerous studies indicate that valuable lessons can be gleaned from post-death reviews. One 2002 report found that when patients were autopsied, major errors linked to the diagnosis and underlying cause of death were found in a quarter of cases.

On Ailee’s death certificate, Hui marked her causes of death as cardiac arrest and metastatic hepatoblastoma.

The day after the surgery, mortuary worker Chantelle Willis collected Ailee from John Muir. As they drove away, she played Beyoncé’s “The Lion King” album for her youngest pickup of the day.

On her release form, the hospital listed property to return to Ailee’s family — a Mickey Mouse blanket and a stuffed owl.

When a friend told Kalamas that Ailee had died on the operating table, she dropped to her knees in her Piedmont living room and sobbed. She said she had assumed the surgery had been called off following her protests weeks earlier. She called Dr. Nick Mickas, John Muir’s medical director of clinical operations.

“I cannot believe you killed this child! I cannot believe you killed this child!” she recalled yelling into her phone.

Mickas did not respond to calls or emails seeking comment, and John Muir Health declined to make him available for an interview. Mickas is not named as a defendant in the Jongs’ lawsuit.

Kalamas said Mickas promised the case would go before the hospital’s internal review panel, the Medical Executive Committee, or MEC. The group of physicians can review colleagues’ behavior and implement new rules to try to prevent problems from repeating.

But the case did not go to the panel, Kalamas would learn.

“This case never made it specifically to MEC but we discussed safety issues in pediatric care since that case,” Yazbeck, the hospital’s chief of staff, wrote to Kalamas on Feb. 26, 2021, in an email reviewed by The Chronicle.

Yazbeck wrote that he had met with the chief medical officer at Lucile Packard Children’s Hospital and that John Muir Health and Stanford had been discussing safety data. He also told Kalamas he was “sure it (Ailee’s case) went to PPEC (the Physician Peer Education Committee) and as you know it is a confidential process.” He told Kalamas to contact a PPEC representative for more information.

The Jongs’ lawsuit states that when Kalamas learned that Ailee’s case hadn’t gone before the Medical Executive Committee, Kalamas contacted Knight, the CEO, and informed him about two other pediatric deaths at John Muir that she believed were preventable.

“Cal Knight was dismissive of the complaints of Dr. Kalamas,” the lawsuit claims.

Kalamas told The Chronicle that in a face-to-face meeting with Knight on March 18, 2021, she reiterated her complaints. She said he told her that the Jongs had selected John Muir due to its convenience, and that the state had found no deficiencies in its death inquiry.

Kalamas said Knight never responded to the “In memory of Ailee Jong” email she then sent him on Aug. 13, detailing her efforts to warn hospital leaders that they weren’t prepared to do the surgery and predicting that Ailee would die if they moved forward. By then, she was no longer employed by John Muir.

The Jongs’ search for answers began soon after the surgery.

Less than a week later, they filed a complaint with the California Department of Public Health. The state’s hospital Licensing and Certification Program can investigate medical facilities and cite them for violations of state or federal regulations.

On Nov. 19, 2019, a health department investigator made an unannounced visit to John Muir and investigated the complaint through “direct observation, interviews, and/or review of documents,” according to a letter to the Jongs.

In their statement, John Muir executives said the investigation included interviews with the care team and a review of Ailee’s medical record.

Three days later, John Muir posted a video on its YouTube page promoting its partnership with Stanford. The video featured Balagtas and Poage and highlighted the same pitch that had encouraged the Jongs to choose John Muir.

“Families can come and they don’t have to drive for hours or seek lodging,” Poage said in the video. “Whether it’s a routine surgery or an emergency surgery or routine preventive care or urgent care, they have access to world-class care in their own backyard.”

Ailee was cremated, and the family held a funeral. The Jongs returned home to a quieter house.

On Dec. 2, 2019, state investigators finished their probe, finding “no deficiencies.”

This was a typical outcome for the Department of Public Health. From 2019 through 2021, the agency reviewed 1,089 complaints or facility-reported incidents involving deaths at general acute-care hospitals. They found deficiencies in just 7% of those cases.

In emails the Jongs provided to The Chronicle, a representative for the agency’s licensing and certification program said investigators had looked at whether John Muir violated state licensing requirements for hospitals. She did not provide details of the investigation.

The same day, a John Muir representative emailed Tom, seeking to set up a meeting with Ailee’s care team at the hospital. They agreed to meet on Dec. 12, the one-month anniversary of Ailee’s death. Tom brought questions and a photo of Ailee on her tricycle.

The medical staff, including Hui, offered some theories as to what could have happened, according to notes taken by the Jongs.

Perhaps it was a clot in a vein that caused Ailee’s heart to stop, or maybe an allergic reaction. The doctors mentioned that elevated potassium levels pose issues, but said they did not see that in Ailee’s case, according to notes taken for the Jongs during the meeting. The medical team said it did not think bleeding caused her heart to stop, either.

There was no discussion of the warnings by Kalamas or any nurses before the surgery.

Ailee’s sister sits at the family dinner table next to an empty place setting, put out for Ailee.

Brontë Wittpenn/The Chronicle

In their statement, John Muir executives said they convened a committee of physicians who had not been involved in the operation to review Ailee’s case. As part of this review by the Physician Peer Education Committee, members questioned the doctors and staff who had been in the operating room with Ailee. The committee “found no concerns with the clinical care provided,” said John Muir leaders.

John Muir declined to provide these reviews to The Chronicle, saying they are confidential by law.

On March 3 of this year, more than 27 months after Ailee died, John Muir Health and Stanford announced they were extending their partnership to 2032.

Jane Willemsen, executive vice president and president of hospital operations for John Muir, said in a press release, “Our successful partnership with Stanford Children’s Health allows our young patients to receive the very best care, ranging from routine to complex, close to home.”

At the Jongs’ home, Ailee’s upstairs bedroom remains mostly untouched. Lizzy the lizard, the rainbow wooden toy that Ailee dragged around the house, sits on the floor near the girl’s bookshelf and toy kitchen. The top drawer of her dresser is filled with her favorite blankets.

One night in early March, a small silver urn sat on the kitchen counter as Truc-Co grated parmesan on three servings of pasta. She then prepared another small serving in a yellow plastic bowl for Ailee. One of her sisters sprinkled cheese on the noodles.

Tom filled a yellow plastic cup with juice and three ice cubes — Ailee’s preference. He placed a small spoon and fork in front of an empty chair.

“Dear God, angels, our friends and family in heaven,” Tom began. Using his daughter’s nickname, he said, “Whoever might be listening … thank you for taking care of Ailee Pilee. We know that she is safe and happy with you all now in heaven and also here enjoying the meal with us.”

Truc-Co Jong holds a letter written on biodegradable paper for her two-year-old daughter Ailee while at Pebble Beach in Pescadero, Calif. on Saturday, March 19, 2022. It’s a tradition the Jong family has been doing since Ailee’s death two years ago at John Muir Hospital in Walnut Creek. While Ailee was expected to survive a surgery as a part of her cancer treatment, she died on the operating table. It was later discovered a doctor, senior nurses and anesthesiologists pulled themselves from Ailee’s case saying the hospital wasn’t prepared for the surgery.

Brontë Wittpenn/The Chronicle

Ailee Jong’s sister, whose parents wished to not use her name, traces Ailee’s name in the sand while at Pebble Beach in Pescadero, Calif. on Saturday, March 19, 2022. The Jong family spent the day writing letters to Ailee on biodegradable paper and placed them into the ocean. It’s a tradition the Jong family has been doing since Ailee’s death two years ago at John Muir Hospital in Walnut Creek. While Ailee was expected to survive a surgery as a part of her cancer treatment, she died on the operating table. It was later discovered a doctor, senior nurses and anesthesiologists pulled themselves from Ailee’s case saying the hospital wasn’t prepared for the surgery.

Brontë Wittpenn/The Chronicle

Truc-Co Jong holds a letter written on biodegradable paper to daughter Ailee at Pebble Beach in Pescadero. Ailee’s sister writes Ailee’s name in the sand. Photos by Brontë Wittpenn/The Chronicle
Truc-Co Jong holds a letter written on biodegradable paper to daughter Ailee at Pebble Beach in Pescadero. Ailee’s sister writes Ailee’s name in the sand. Photos by Brontë Wittpenn/The Chronicle

Tom’s memories of Ailee’s bout with cancer and her surgery are remarkably vivid, he said, like scenes from a movie repeatedly watched. However, over the past few months, everything seems unclear.

“You don’t know what you don’t know,” he said. “It never occurred to us that we had to consider if the hospital had any other motivations other than Ailee’s well-being.”

The Jongs did not learn that Kalamas and other members of John Muir’s staff had raised alarm about their daughter’s surgery until after The Chronicle’s article in January.

The couple said they hope their lawsuit will prompt change at John Muir, including stricter guidelines for such surgeries, increased transparency and more thorough reviews after the death of a child.

They would also like an apology.

“I think we have an opportunity to do something to help other parents and to prevent this from happening to other children,” Tom said. “We’re not out for revenge. We’re looking for justice, and there is a difference between the two.”

Ailee Jong’s oldest sister waits to toss a letter to Ailee into the ocean at Bean Hollow State Beach on the San Mateo County coast. Since Ailee’s death, more than two years ago, the Jong family has been writing these letters as a tradition to honor Ailee.

Brontë Wittpenn/The Chronicle

On March 19, a rainy Saturday, the Jongs drove down Highway 1 in San Mateo County to Bean Hollow State Beach, a tiny cove they have visited many times since their daughter died. They huddled together and wrote notes to Ailee on small pieces of rice paper.

“I hope you enjoy the fishies!” her middle sister wrote. Her eldest sister drew an ocean with a rainbow and a smiling sun. Her mother sketched an underwater scene featuring Ailee’s favorite sea creatures.

Tom hunched over, a piece of paper on his knee, as he wrote to his “tiny baby monkey princess.” He said he was sorry he had been avoiding her photos and videos lately. He would never avoid or hold back his feelings again, he wrote.

He explained how much he missed her. How she still made him a better person.

“I’m trying to do everything in my power to change the world in your name, for the better, but it never feels enough,” he wrote. “I think that’s the point isn’t it? Doing good should never end and now I know … I’ll make it our way of life.”

They released the sheets of rice paper in the water, letting them sail and dissolve into the cold surf of the Pacific Ocean.