Newborn acquired infection after being fed stranger's breast milk in Toronto NICU

Over the course of her weeks-long admission to neonatal intensive care units last summer, an Ontario family's premature baby suffered low oxygen levels and acquired an infection after being fed a stranger's breast milk — but her family says, ultimately, it was a lack of communication from the Toronto area hospitals' staff that has "forever shattered" their trust.

Gabriele Forneris’ daughter, who CTV News Toronto has agreed not to name, was born prematurely, weighing under 2 lbs, at Trillium Health Partner's Mississauga Hospital on May 10, 2022.

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Following her birth she struggled to breathe and required intubation but at some point the tube dislodged, resulting in her oxygen levels dipping down to below the recommended levels, according to medical records reviewed by CTV News Toronto. By July, the infant’s condition had improved and she was moved to St. Joseph’s Health Centre for further treatment. That’s where she was given the wrong mother's breast milk, according to the records.

While the two incidents were “traumatizing” for the Forneris family, they say it was a lack of communication from the staff at both hospitals surrounding their baby’s care that disintegrated their trust in the system -- Forneris said he and his wife were not informed of the full extent of the alleged errors while their daughter was admitted to hospital. Instead, they said they were only able to paint a full picture of the experience after requesting the medical records themselves this spring, nearly a year later.

“At the end of the day, you’re supposed to trust doctors and that’s what we did,” Forneris said. “I never want to go to a hospital again, and we certainly can never have another baby. How could we?”

When reached for comment, Trillium Hospital, where Forneris’ daughter was born and intubated, said it could not comment on patient information, but that, in cases like this, it works extensively with families “to listen to and understand their concerns, apologize for their experience and take the appropriate steps to ensure the health and safety of those in our care.”

St. Joseph’s Health Centre, where the infant was fed infected breast milk, apologized for the error in a statement to CTV News Toronto and said it has “taken action to learn from this experience and review processes.”

Neither hospital responded to questions about the lack of communication with the family surrounding the infant’s care.

‘WHY DIDN’T THEY TELL US?’

Trillium Hospital records reviewed by CTV News Toronto showed that the tube used to intubate Forneris’s daughter became dislodged the day it was put in place.

In an exchange with a pediatrician, recorded by the Forneris family and reviewed by CTV News Toronto, the physician can be heard saying that the intubation was in place at the time of insertion, but “that at some point after that, the endotracheal tube must have slipped out.”

The pediatrician goes on to insist that the infant’ “was still getting enough oxygen the whole time.”

However, records requested from Trillium Hospital nearly a year after the infant’s admission gave the Forneris’ their first indication that may not have been the case – the documents show Forneris’ daughter’s oxygen saturation were recorded well below the recommended level of 95 per cent, dropping to 78 per cent at its lowest, during her first hours of life. According to Toronto’s Hospital for Sick Children's website, oxygen saturation levels below 95 per cent, otherwise known as hypoxemia, can be cause for concern in children.

SpO2 levels indicate oxygen saturation levels. (Handout by Forneris)

Forneris says he's still shocked that he only acquired this information after requesting his daughter's full records, and that his family was not informed of the drop in levels while she was under Trillium’s care. 

“The problem that I can’t understand is why they didn’t tell us [about her oxygen levels]?” Forneris said. “If it had been explained at the time, I wouldn't have been so upset.”

‘I NEVER KNEW TO ASK’

By July, the infant had been moved to St. Joseph’s Health Centre due to improvement in her condition, but the concerns with her treatment continued.

Forneris says he was sitting in his daughter's room on July 1 when he found an empty bottle of breast milk. The label on the bottle had a name that did not belong to his wife or daughter.

"It was not even a similar name," he recalled.

He said he asked the nurse if the bottle had been fed to his daughter, to which she replied that it had.

The nurse then appeared “panicky,” Fornenis said, “and admitted her mistake.”

“She assured me not to worry and asked if we could talk about the problem the next day,” he said. “I am not overly mad at her," he added. "She was very overworked."

The next day, the family met in person with hospital staff, including the pediatrician, to discuss the mix-up.

It was within this conversation that Forneris said he learned of the possibility of a cytomegalovirus (CMV) infection. CMV is in the family of the herpes virus and is the most common cause of hearing loss in infants, according to the Canadian Paediatric Society (CPS). It can be transmitted via direct contact with infected body fluids, such as breastmilk.

READ MORE: Father pushing for Manitoba to follow Ontario, Saskatchewan on screening for CMV

During the conversation, recorded by Forneris, their doctor can be heard explaining his baby’s risk factor is low, because the donor’s mother’s risk factor is also low.

“Your baby’s not at risk,” he can be heard saying. “But if you really [want] then we will have to ask [for] the blood work.”

Forneris said he knew nothing of cytomegaloviruses (CMV) at the time, so he didn’t know what to ask.

“Why did we have to insist [for the bloodwork]? Why didn’t they insist?” Forneris later said in his interview.

Forneris said the conversation left him uneasy, so he requested a transfer to Credit Valley Hospital in Mississauga.

On July 15, 2022, at Credit Valley, the family said they were informed by healthcare staff that Forneris' wife's blood tests had come back negative for infection. They were also informed by email that the other mother did not have an active infection, but that her tests had indicated that she had one in the past.

At this point, Forneris said his daughter’s health began to deteriorate again and she had to be placed on oxygen for a second time in just over two months.

Medical records show the baby tested positive for a CMV infection on July 17, 2022. After weeks of oxygen therapy, the infant began to recover once again. 

It wasn't until nearly a year later, in May 2023, the family received the full infectious disease records which state that the other mother's blood work had indeed tested positive for a recent infection at the time of the mix-up.

Forneris said, when he received the report, he was struck not only by a lack of communication from hospital staff but that his daughter had very likely been infected throughout her entire stay at St. Joseph’s.

“Why didn't they tell us? We were in the NICU, handling our baby, we didn’t take precautions and there were other vulnerable babies in there,” Forneris said. “My wife and I were exposed and we were in contact with many other kids."

Records from SickKids Infectious Disease Clinic show the donor mother had tested positive for an infection. (Handout by Forneris)

While St. Joseph’s admitted and apologized for mixing up the milk in both a statement to CTV News Toronto and a letter issued to the family, they did not respond to questioning from CTV News Toronto as to why the family might not have been informed of the mother's active infection. 

"We have worked closely with the family in this case to understand their concerns, ensure the health of those in our care and say how sorry we are for what happened and the distress it has caused," a spokesperson for the hospital said in a written statement.

The Forneris family says that, as of Aug. 1, the hospital has not discussed the mother's positive test results with them despite repeated attempts to facilitate a dialogue.

“When you have a concern you have to speak up,” Forenis said. “This is what we have to tell the public, because we didn’t ask enough questions, and our baby never got an antiviral through that whole time.”

Following their experience at St. Joseph’s, the Forneris family filed a complaint with Toronto Public Health, the College of Nurses of Ontario (CNO), and the College of Physicians and Surgeons of Ontario (CPSO).

In its findings, the CPSO acknowledged the erroneous feeding and lack of communication, but took no action against the supervising pediatrician, stating that proper testing was ordered once the mix-up was uncovered.

While the pediatrician ensured the tests were done, "[they] did not indicate specifically who was to follow up on those results." 

"Given that the committee cannot determine what occurred, yet recognizing that appropriate testing did occur and the results were conveyed, the Committee will take no action but takes this opportunity to state its expectation that the Respondent, as all physicians, would be mindful of the importance of communications with other health care providers," it wrote.

The error, and subsequent lack of communication, clearly caused "significant anxiety for the [family] and may have set this entire process in motion," the college found.

When reached for comment, Toronto Public Health did not provide comment on the status of the complaint. The College of Nurses of Ontario has not completed its investigation.

CARE PLANS SHOULD INCLUDE FAMILIES: EXPERT

Dr. Michael Narvey, chair of the fetus and newborn committee at the Canadian Pediatric Society and practicing neonatologist, believes that, at the core of excellent care, lies transparency and collaboration.

“Families of infants are not visitors,” Narvey said in an interview Thursday. “They’re essential care providers, and that’s an important perspective change.”

Narvey endorses the Shared Decision-Making Model. “What that means is: you present the family with the information, you explore their values – for example, their religious beliefs – you have a dialogue, you hear their perspective, you take into account relevant history, and then you make a shared decision [on treatment].”

If communication is jeopardized, patients, families and healthcare professionals all stand to suffer, he said.

“The main fallout is a breakdown of trust, when a parent feels that something has not been shared with them, it leads to thoughts of ‘What else have I not been told?’ and that can lead to suspicion,” Narvey said. “Practitioners can also become paranoid that they will be overly criticized or questioned.”

There are no scenarios in which a family should have information about their infant’s health or care withheld from them, the neonatologist added.

“Maybe if staff deem it appropriate to wait to talk to a family face-to-face, there might be a delay in communication of a couple of hours.” he said.

“But no, ultimately, we should never be keeping information from families.”

READ MORE: Premature babies have better outcomes when parents are involved in ICU care: study

Forneris believes open communication and transparency could have changed the course of his daughter’s treatment in her first weeks.

Earlier this month, the baby, just over a year old now, did not meet the standard during her infant hearing tests, records show. Both low oxygen levels, albeit common in preterm babies, and CMV infections run the risk of hearing loss in infants.

Forneris and his daughter can be seen above.

While Forneris says he’ll never know if the damage was a result of her neonatal experience, he says he's heartbroken that he wasn’t provided a full picture earlier on.

“In September, my baby is supposed to go to daycare, but how will we be able to leave her?” the father said. “My wife is traumatized, she will not leave [the baby].”

Forneris, who has been in therapy for anxiety following the experience, says he’s using his remaining strength to take on the role of spreading the word and encouraging families to speak up in medical settings.

“My wife, she is broken, but I have the strength to talk about it and I just want to know the truth and tell the public the truth," he said.

"No family should go through this."