Miles Cohen died in his parents’ arms at Toronto’s Hospital for Sick Children.

A leaking feeding tube patched with tape. Lack of consent. A surgeon training to be a pediatric specialist. These are some of the red flags Miles’s parents discovered over the past 16 months as they traced the steps and missteps that left their baby dead in a world-class hospital.

“We want to understand what happened to Miles so that this does not happen to another child,” said Joseph Cohen, Miles’s father. He and his wife, Margaret McBeath, have found the hospital “tight-lipped and guarded” when questions have been asked.

Sick Kids is regarded as one of the best children’s and research hospitals in the world. The hospital told the Star Miles’s care could have been better, but would not answer detailed questions.

“We conducted a review and determined that there were a number of areas where we could have performed better, which we deeply regret,” a Sick Kids spokesperson said. The Office of the Chief Coroner is investigating and says Miles’s case will be referred to its Paediatric Death Review Committee.

The hospital told the Star it could not comment because of “patient privacy and confidentiality,” and that it would be “inappropriate” to comment because of the coroner’s investigation.

With the help of the parents and 1,100 pages of hospital records, the Star has pieced together the story of the short life of Miles Cohen.

Margaret McBeath and Joseph Cohen met about 16 years ago through mutual friends at the Green Room, a hangout popular with students near Bloor and Bathurst in Toronto. Joseph was working in accounting, and Margaret, a U of T student, would go on to work in human resources.

Both had always wanted a large family, but when they first met, they didn’t think it would happen. Ten years earlier, Cohen had been told by a urologist he wouldn’t be able to have children. So when McBeath became pregnant in 2003 with their first child, it was a delightful surprise. In the ensuing 11 years, life got considerably busier as they grew their family to six children.

In August 2015, McBeath learned she was pregnant with twins. Regular ultrasounds pointed to a healthy pregnancy.

Miles and his brother Graham were born naturally about 4 a.m. on Dec. 25 at Mt. Sinai Hospital. The boys were seven weeks premature and doctors immediately noticed Miles was having trouble breathing. He was given additional oxygen and put on a ventilator. Shortly after Miles’s birth, the medical team found he had three congenital defects, none of them considered life threatening if treated quickly, his parents say doctors told them. He had a hole in his trachea, a gap between his esophagus and stomach, and a malformed anus — a group of defects that can sometimes occur in association in some babies.

“I was quite shaken up by hearing about this, but they were very reassuring,” McBeath said.

Later on the day he was born, Miles was whisked from Mt. Sinai to the Hospital for Sick Children using an underground tunnel connecting the hospitals under busy University Ave.

A Sick Kids doctor told McBeath the hospital would have to operate to connect Miles’s esophagus to his stomach, fix the hole in his trachea and perform a colostomy, a procedure that connects the bowel with a small opening in the abdomen so waste can leave the body. The repair to Miles’s malformed anus would have to wait until he grew bigger and healthier.

Tired and dazed, McBeath signed a consent form, which she said she was told covered Miles’s operation the next day only.

While operating, surgeons fixed the hole in Miles’s trachea but found the distance between his stomach and esophagus too large to make a connection. They decided to hold off until he grew. To ensure Miles could be fed pumped breast milk, a feeding tube (also known as a G-tube) was placed in the left side of his stomach. A catheter designed for urology patients was used as the feeding tube “due to a lack of availability of an appropriate size” tube for small babies, according to Miles’s medical records.

A Sick Kids spokesperson, asked about the tube, told the Star “it is not uncommon to adapt medical devices to address the needs of our small patients, especially when dealing with premature infants.”

It was a whirlwind for Miles’s parents. McBeath was still recovering in the hospital. Cohen was looking after the children at home, visiting as often as he could.

After Miles’s operation, McBeath was at her son’s bedside when she says she learned from a nurse that a hole discovered in Miles’s feeding tube had been repaired with tape. McBeath looked at the tiny, flexible plastic tube going into the left side of her son’s stomach and saw pink tape, which she says the nurse called “electrical tape.”

According to Miles’s medical records, the hole was repaired both with Tegaderm, a sticky transparent film usually dressed over wounds and catheter sites, and “waterproof tape.”

“I was shocked,” said Cohen, Miles’s dad. “Electrical tape didn’t sound sterile.” He recalls a nurse saying, “ ‘Don’t worry, the stomach isn’t a sterile place.’ ”

Sick Kids told the Star it “only uses medical tape for clinical purposes.”

Concerned that the tube may have been defective when it came out of the box, Miles’s parents started asking questions. Had the manufacturer been informed? What about reporting the problem to a government regulator? What was the hospital doing to ensure no other children received a faulty tube?

In the days after his operation, Miles began to get better. His brother Graham, however, joined Miles at Sick Kids after developing necrotizing enterocolitis, a dangerous disease affecting the intestinal tract. The two babies were placed in the same room. (Graham later made a full recovery; he is now healthy and almost 1½ years old.)

After about a week, Miles was breathing on his own. Doctors started talking about doing a second surgery to connect his esophagus to his stomach, his parents say. McBeath began learning how to change Miles’s colostomy bag.

“Everybody’s outlook was very positive,” McBeath said. “We started to work very quickly towards discharge.”

The feeding tube Miles’s parents were worried about proved to be an ongoing problem. On three occasions following his operation, the tube was noted by hospital staff to be leaking, despite the tape.

Early on the morning of Jan. 19, 2016, hospital staff found a leak in the tube where it was taped. Another piece of tape was applied, but the tube snapped.

Miles’s medical records show that a couple of hours after the tube snapped, doctors replaced the tube at Miles’s bedside and not in an operating room as in the case of the first tube. Staff surgeon Dr. Annie Fecteau removed the broken tube and another doctor, Dr. Giuseppe Retrosi, “immediately” inserted a new feeding tube, the records say.

Miles’s parents were not informed of the procedure at the time.

Retrosi, who had already qualified as a general surgeon, was halfway through a one-year general surgery fellowship in the specialized field of pediatric surgery.

While visiting Miles later that day, McBeath was told by a nurse that Miles’s feeding tube had been replaced.

“I said, ‘Well, why didn’t you call me?’ She didn’t have an answer for that,” said McBeath, whose mobile phone number was affixed to Miles’s monitor above his bed.

McBeath and Cohen were perplexed as to why they weren’t consulted about the feeding tube replacement, especially since the hospital knew the tube had been a sore spot for them.

During this sometimes frantic period, Miles’s parents said they had difficulty getting answers to questions. Many of the answers only came when the hospital turned over 1,100 pages of records detailing Miles’s care after he died.

Medical malpractice lawyer Paul Harte, who is not involved in the case but has reviewed Miles’s medical records for the Star and with the family’s consent, said in his view doctors should have consulted the family before replacing the feeding tube.

“Patients are entitled to be informed of the risks, the benefits and all reasonable alternatives of any proposed procedure,” he said.

On the evening of the day Miles’s feeding tube was replaced, McBeath had just returned home when she received a call from Sick Kids telling her she should return immediately. Miles was not doing well. McBeath says a doctor at the hospital told her that there seemed to be some fluid building up in Miles’s lungs and that he may have pneumonia.

After several hours, Miles seemed to be stabilizing. McBeath lay down in a nearby room and a nurse promised to wake her if anything changed.

About an hour later, there was a frantic knock on the door. “You need to come right now,” the nurse said.

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Returning to the neonatal room “was like walking onto the set of ER,” McBeath said.

Doctors and nurses crowded around Miles while others ran in and out of the room. Miles’s heart had stopped. He wasn’t breathing. Doctors worked frantically to save him, performing chest compressions for nine minutes and injecting him with a cocktail of drugs and hormones.

“We were planning for a wonderful life ahead of him,” McBeath said. “All of those dreams were disappearing in front of me as they worked on him.”

Doctors managed to get Miles’s heart beating again and he was put on life support.

The next day, his parents say they were told informally by hospital staff that Miles’s feeding tube had “migrated” from his stomach and gone into his chest cavity.

McBeath and Cohen met with Dr. Kyong-Soon Lee, a physician specializing in the care of newborns, who recounted what happened the night before. The couple said Lee said the event was caused by “medical mismanagement.”

The hospital’s media relations department says Lee said she did not use that term when in discussion with Miles’s family. Lee did not respond to the Star’s request for an interview.

Fecteau, the staff surgeon who supervised the feeding tube replacement, referred the Star to the hospital’s media relations department.

Retrosi, now a pediatric general surgeon at the Health Sciences Centre in Winnipeg, told the Star in an email: “I have no comment about the accident.”

McBeath and Cohen say doctors told them that because Miles had no oxygen for nine minutes, he would almost certainly suffer serious neurological problems. He would also be in constant pain. He would probably never walk. He would never be able to go to the bathroom by himself.

Doctors broached the possibility of withdrawing life support.

“It’s a hellish decision,” McBeath said. “It’s not black and white.”

Two days later, McBeath and Cohen brought Miles’s brothers and sisters to the hospital to say goodbye. Not wanting to upset the relatives of the other babies sharing Miles’s room, McBeath and Cohen waited until shortly after 2 a.m. on Jan. 23 to take Miles off life support.

About 40 minutes later, Miles died in their arms. He was 29 days old.

An autopsy performed by a Sick Kids staff pathologist noted that X-rays taken before Miles went into cardiac arrest showed a “white-out” of the left lung and a large amount of fluid in the left side of his chest.

The coroner’s report states that “it became evident that his second G-tube had either been placed incorrectly or migrated such that it was filling his left chest cavity.”

The autopsy report notes that about 100 millilitres of milk had accumulated in the area around Miles’s left lung. The report states with “high confidence” that the milk feeds entering Miles’s chest created the conditions for his cardiac arrest and brain injury due to oxygen deprivation.

A couple of weeks after Miles’s death, McBeath and Cohen received a phone call from Sick Kids’ risk management department to discuss Miles’s case. Cohen asked for the names of the surgeons who replaced Miles’s feeding tube. He said that despite repeated requests, nobody would tell him directly, but suggested he was free to request the medical records.

The hospital said “it is our understanding” that the supervising surgeon, Fecteau, spoke to the family herself after the procedure, something the family says is not true.

Regardless, it wasn’t until June 2016 — six months after the child’s death — that the department finally told him when a new staff member arrived at the risk management department, he says.

Cohen and McBeath say they were upset to learn that the surgeon who replaced Miles’s feeding tube, Retrosi, was training in the more specialized field of pediatric surgery. They say had they known, they would not have consented to having him replace the tube.

Miles’s parents say the hospital should make sure patients know who is performing procedures so that they can give informed consent.

In a letter sent to the family shortly after the Star began asking questions in April 2017, Dr. Lennox Huang, Sick Kids’ chief medical officer and vice-president medical and academic affairs, wrote that in its general practice, the hospital does not typically seek consent in cases like this “as it is felt that the replacement is an adjustment covered under the original consent.” He added that it “should have been more proactive in discussing the situation with you.”

The hospital did eventually report the broken feeding tube to Health Canada, which regulates medical devices, in June. The Star obtained a copy of the report, which states that the tube was used for just two days, a timeframe contradicted by Miles’s medical records. The records show the tube was used for more than three weeks.

Sick Kids would not address the Star’s inquiry about this discrepancy.

Medtronic, the manufacturer of the catheter used as Miles’s feeding tube, told the Star the device has been licensed by Health Canada “for urological use only.”

McBeath and Cohen say they asked the hospital to include them in its review in the wake of Miles’s death because they witnessed much of their son’s treatment. Cohen says he left several messages with the hospital to set up a time to meet, but didn’t hear back. In the hospital’s April 2017 letter to the family, Sick Kids said it “never received confirmation of a time that would work for you.”

The family later learned the hospital had come up with two recommendations from its review: create a hospital-wide process to ensure oversight of feeding tube insertion and management practices; and expand the education strategy for chest tube insertion and management for neonatal trainees and faculty.