As her 6-month-old lay dying in her arms, Becky Kekula struggled to make sense of how this could be. They were in the intensive care unit of Boston Children’s Hospital, a place known for saving lives. Yet for all its medical might, the institution could offer no more hope for her baby boy.
Weeks earlier, Becky and her husband, Ryan, had brought Jackson to the hospital for a car seat test and a sleep study, a fairly routine procedure for babies with certain conditions. The test was an important one for Jackson, who was born with the most common form of dwarfism, achondroplasia, which can complicate sleep issues.
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Yet what started as a test to check their baby’s ability to sit safely in a car seat turned deadly after a devastating series of errors by Children’s staff left Jackson without oxygen for more than 20 minutes, according to an investigation by the Massachusetts Department of Public Health. According to the Kekulas and their lawyer, he suffered a catastrophic brain injury that left him on life support.
This month, the couple received a $15 million settlement from the hospital, among the largest medical malpractice settlements ever reported in Massachusetts, according to the Kekulas’ attorney, Robert Higgins.
Higgins contends that staff at the hospital failed to properly monitor Jackson during the February 2022 test, focusing on what they thought was an equipment malfunction instead of checking Jackson’s breathing and heartbeat.
According to an investigation and documentation compiled by the Department of Public Health, the hospital suspended inpatient and outpatient sleep studies for approximately five weeks after the tragedy. It also implemented a number of corrective steps, including holding training and simulation exercises for technologists and having a nurse evaluate their skills, improving documentation of doctors’ orders for sleep studies, and assigning nurses to oversee patient care in such cases.
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“We took it extraordinarily seriously and have done our best to strengthen all of our systems,” said Dr. Sara Toomey, senior vice president and chief safety and quality officer at Boston Children’s Hospital, in an interview. “We had these components in place prior, but this really made us stop and do a thorough review to make sure we could strengthen absolutely every aspect.”
Independent pediatric sleep experts said it is incredibly rare for an elective sleep study to result in a child’s death. Toomey said that, outside of this incident, the hospital has never had a serious adverse event in a sleep study.
The Kekulas declined to sign a nondisclosure agreement as part of the settlement with the hospital because they wanted to be free to let other parents to know the risks associated with what many assume is a benign procedure, even when done at one of the most prominent pediatric hospitals in the country. In particular, as parents with achondroplasia and members of the little people community, they hope what happened to Jackson will lead to changes in how car seat tests and sleep studies are run and the rigor with which they are monitored.
“There are a lot of families [in the little people community] that go to that place. I can’t say what to do or not to do. But it’s important for them to know what happened,” Becky said.
Becky and Ryan Kekula had moved to Massachusetts from Milwaukee in 2020 to be closer to Becky’s relatives, and with the hope of soon having children. They took a Christmas card picture in front of their Plymouth house in November, and later discovered that was the day Becky had become pregnant.
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The anxiety of a first pregnancy was compounded by some of the unknowns of achondroplasia, a genetic bone growth condition that can cause health complications. As both Becky and Ryan also have the genetic condition, there was a 50 percent chance their baby would too. If the baby was born with two recessive genes, he or she would grow to an average stature. However there was a 25 percent chance their child might receive two dominant copies of the genetic trait, a fatal condition.
Genetic testing in February brought relief — the baby had only one copy of the genetic trait, and would be born with achondroplasia like his parents. Though they didn’t ask to know the gender, the couple accidentally spied it on one of Becky’s medical reports. They picked out a name — Jackson. It was their secret.
The couple was prepared for Jackson to need some additional care after he was born, as, typically, babies with achondroplasia spend some time in the neonatal intensive care unit. Jackson arrived via scheduled C-section at South Shore Hospital on Aug. 9, weighing 6 pounds, 13 ounces.
While he was in the NICU, doctors discovered Jackson was having some episodes of sleep apnea, interruptions in his breathing that caused his oxygen levels to drop while he slept. The hospital also discovered that Jackson had trouble breathing while in a car seat. Clinicians have historically been concerned that some premature babies might have trouble breathing in car seats. And in babies with achondroplasia, the head is often larger than their smaller bodies can properly support when sitting up, which can make their heads flop down and obstruct the airway. These babies also have smaller chests that may cause them to take smaller breaths.
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Jackson was taken by ambulance to Boston Children’s for a more thorough investigation of his sleep apnea, in an inpatient sleep study in their NICU.
Because of the car seat issue, Jackson was given a flat car bed, so he could travel in the car lying down. Back home after the test, Jackson wore a nasal cannula, to address his sleep apnea; small stickers on his face held in place a tiny oxygen tube. On his foot, he wore a pulse oximeter, which uses a light beam sensor to give real-time readings of oxygen levels in his blood. A visiting nurse would come once a week, and eventually an early interventionist to work on his mobility and overall development.
“We could monitor his mild sleep apnea at home with the plan of a three-month follow-up, once he had a chance to grow his lungs a little, become a bigger baby,” Ryan said. “A lot of times babies will grow out of the mild sleep apnea.”
As his parents tracked the baby’s ordinary cycles of bottles and diapers on a spreadsheet and monitored his oxygen level closely, Jackson began to bloom. He gained weight and the visiting specialists fell in love with his personality. His parents photographed Jackson at 2 months: With the pulse oximeter still attached to his foot, his parents briefly removed the nasal cannula and, unencumbered by the medical device, his cheeks stretched into an adorable smile.
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On Feb. 18, 2022, the Kekulas returned to Children’s for Jackson’s 6-month follow-up. By then, they knew what to expect. The family had already returned to the hospital in November for a car seat test and for a sleep study done at 3 months.
The sleep center at Children’s, opened in 1978, was the first of its kind nationwide, according to the hospital website, and sees more than 4,000 children a year. Care there is backed by decades of research that, the website said, has “shaped the field of pediatric sleep medicine.”
To ease any anxiety over the process, Children’s had provided Becky with an orientation video. It shows an adult and child taking an elevator to the ninth floor, and a sleep technician outfitting the girl with monitoring equipment.
“There’s nothing that hurts about a sleep study,” the woman in the video says.
Since December, Jackson had shown enough progress to go without supplemental oxygen for long stretches of the day, but he still needed to travel in a flat car seat bed and needed oxygen at night.
As they had before, the family arrived on the ninth floor for the tests. But, unlike the last time there, they were redirected to the sixth floor. Toomey, the Children’s executive, said both the sixth and ninth floors are used for outpatient sleep studies. However Becky said the space seemed fairly empty.
And this time, the room where Jackson would be tested was smaller. The technician who had been in a room next door was now in a room down the hall. But as before, the technician outfitted Jackson with nodules affixed to parts of his head to measure brain activity, a chest band to measure his breathing, and a pulse oximeter on his bare foot. A nasal cannula was under his nose, which Becky said she was told was to monitor CO2, not to provide oxygen.
Though Jackson was hooked up to monitors, there were no obvious monitors in the room that allowed his parents to see his vital signs. At home, the parents had monitored that data closely.
In his last car seat test and sleep study, though his oxygen saturation had dipped periodically, Jackson wasn’t given supplemental oxygen. The whole point was for him to be closely monitored, and the parents trusted staff would step in if they needed to.
Jackson fussed. The couple tried to calm him down in the darkened room, changing his diaper, feeding him part of a bottle.
Gingerly, Ryan placed Jackson in the car seat at 9:39 p.m., and the car seat was placed on the bed.
The couple said goodnight to one another, as Ryan planned to spend the night at a nearby hotel. The room could accommodate only one parent.
Higgins, an attorney with the medical malpractice law firm Lubin & Meyer, who represents the Kekulas, said hospital vital sign records and a video of the sleep study, which was returned to Children’s as part of the settlement per the hospital’s request, showed how quickly Jackson began to have problems, and how long it took to provide him care.
According to Higgins, who viewed and took detailed notes on the video, at 9:42 p.m., a technician came into the room and briefly adjusted some of the monitoring gear. Jackson was whimpering slightly, sucking on a pacifier as he drifted in and out of sleep, arms and legs moving in the car seat from time to time. His oxygen saturation read 95-97 percent, which is in the normal range.
By 9:48 p.m., Jackson’s oxygen was reading at 94 to 95 percent. He had begun to fuss, and his oxygen quickly ticked down — 92 percent, 90 percent, 87, 85, 83.
While there is little consensus on the safe threshold of oxygenation in the blood, clinicians typically like to see saturation above 90, which indicates there is enough oxygen to support vital organs. Low oxygen levels can lead to organ failure.
According to Higgins, the hospital’s documentation shows that by 9:50, Jackson’s oxygen had dropped to 65 percent — perilously low. He began to groan with each breath. There was no immediate response from the technician.
On the sleep sofa nearby, Becky was feeling uneasy, and Jackson’s fussiness seemed unusual.
“It just seemed off,” Becky said. “Of course looking back, I wish we just were like, ‘Can we go home? Do this another time?’ But I still wanted to trust the process.”
As his oxygen levels dropped, his heart rate began to falter, from a normal range of 88 to 104 beats per minute at 9:50 p.m., down to 40 two minutes later.
At 9:52, Higgins said, the video showed the technician coming back into the room and adjusting the pulse oximeter on the baby’s foot. Within a minute, she came back again, this time with a second technician in tow. The pair discussed something quietly, and took the pulse oximeter off and put it back on. At 9:55 p.m., the other technician restarted the monitoring system placed at the head of the bed. But no one checked on the now quiet Jackson to make sure he was breathing normally, said Higgins. No other medical personnel came in.
Dr. Larry Rhein, a neonatologist and a pediatric pulmonologist who is department chair of pediatrics at UMass Memorial Medical Center, declined to comment on the specifics of the incident, but he noted that it is not uncommon for equipment to give faulty readings.
“It isn’t inappropriate to focus on the technology issues first, if the child is well appearing,” he said.
Clinicians, he said, should react promptly to concerning readings, but also need to be careful not to overreact to what could just be a loose probe by stopping the test. That can mean more months of oxygen at home before a repeat test.
“That’s the problem with non-invasive, frequent monitoring. Small things can make it go off [without a real reason],” Rhein said.
That said, clinicians should always look at the baby, even before looking at the monitor, he added.
Becky sensed something was amiss. “I definitely started getting more of a spidey sense of what the heck is happening,” she said. “It was like they were still struggling to get a reading … so I said, ‘Well, this is how we do it at home. You guys have been putting this pulse oximeter just like on one of his toes. We usually wrap it around his whole foot.’ And they’re like, ‘We’ll try anything.’”
By 9:56, Jackson’s breathing had begun to slow. Studies put normal respiratory rate for 6-month-olds between 24 and 64 breaths per minute. Documentation showed Jackson was taking to six to eight. By 10:03 monitors on Jackson’s brain activity also showed a problem. The typical bursts of activity had stopped, and the pattern of outputs had flattened.
By 10:04 p.m., the technicians unplugged the monitoring equipment from the wall and plugged it back in. The video of the test stopped, and when it came back on at 10:06 p.m., both techs were in the room looking at the wiring, and again looking at the pulse oximeter on Jackson’s foot, but not at Jackson.
Not until 10:11 p.m., vital record documentation notes, did the tech look at Jackson. She touched his hand. But she soon turned her attention back to the devices.
With Jackson in the car seat, elevated on the high hospital bed, Becky couldn’t see him. But in the video, Jackson’s lips started to slacken around the pacifier and change color, Higgins said.
The technicians began to alternate coming in and out of the room, still adjusting wires and the pulse oximeter, unplugging different pieces and plugging them back in. At 10:17 p.m., a technician removed Jackson’s pacifier.
At 10:21 p.m., the technician was recorded in the documentation as standing at the bedside, feeling the baby’s foot. Soon the video cut out again briefly and by the time it came back on, the technicians had clearly realized something was wrong with Jackson. The lights in the sleep lab had been turned on, and Jackson had been taken out of the car seat. The technicians were tapping his chest and legs gently as they urged him to wake up.
“Come on. Hello buddy,” they said. Documentation shows they hit a button. Out of view of the camera, a nurse poked her head in. Is everything all right? No, they said.
The nurse quickly came over and placed a hand on Jackson’s back, then immediately called a code, laying Jackson flat on his back to perform CPR. Jackson was in cardiac arrest.
Becky shouted, asking if everything was OK, and then was ushered into a nearby room as nurses and doctors began to stream in. Frantically she texted Ryan — you have to come back, he’s not breathing.
The care providers were able to restart Jackson’s heart. But medical tests later showed Jackson had suffered a severe brain injury from the extended lack of oxygen, leaving him with minimal brain activity and reliant on machines to keep him alive, according to the Kekulas and Higgins.
As the parents struggled to understand his dire medical prognosis, they were whipsawed by updates on what had transpired during the botched car seat test.
Becky and Ryan had Jackson baptized by a hospital chaplain, and had family and friends come by or visit over Zoom. In the ICU, Becky watched as other families held their children, and she asked if she could hold her son. Soon, the unit staff moved Jackson to a bed without rails, allowing the couple to lay in a bed next to him. Becky and Ryan were bereft. Becky said she was in denial of what Jackson’s future would be, until a clinician commented on one of the pictures of Jackson that the couple had brought into the room. Jackson would never smile like that ever again, the clinician said.
Choosing a day to withdraw life support was agonizing. Ultimately, they decided to spend one final day with him, and withdrew life support the evening of March 2 — 12 days after the fatal test.
Those final moments haunt Becky, the gratitude that she could be there to comfort him mixed with the heartbreaking toll of watching her baby take his final breaths; she felt caught in a swirl of helplessness and fury.
“I saw someone write this recently. They were celebrating the child’s birthday and they said, ‘I will always protect you’,” Becky said, her throat tightening around the words. “But in that moment, there was nothing I could do to protect him.”
The Kekulas met with attorneys the next day. Higgins sent the hospital a notice letter of a potential claim on June 15. No lawsuit proved necessary; Children’s agreed to the huge damage award within several months.
Children’s declined to comment on whether the technologists involved in Jackson’s sleep study were still employed by the hospital. However officials said they have instituted a number of changes as a result of the incident, including hiring more nurses to be present on the floor during sleep studies.
The hospital now has a more rigorous training for its sleep technicians — whose numbers have grown from 15 before the incident to 22.
Children’s declined to comment on the terms of the settlement, but Toomey said the hospital expressed its deepest condolences and apologized to the family for the loss of their son.
Though the settlement is behind them, the pain of their loss remains acute. Becky said she receives monthly mailings from Children’s on bereavement support; each time it is a painful reminder of what happened and where.
Jackson was conceived naturally, but the couple has been exploring IVF to have another baby. There remains a 25 percent chance they could conceive a baby with a fatal genetic abnormality. IVF would allow for screening of embryos for such a condition before they were implanted.
“The reason why we wanted to pursue the IVF route is because we just emotionally don’t want to face another tragedy, if we can prevent it,” Becky said.
After working with one clinic for nearly a year, they were informed in January that the clinic would only implant embryos that did not have achondroplasia, despite the couple’s preference to have a baby with the genetic condition they share. A second facility it referred them to told them the same. The couple is considering starting IVF in another state.
“We’re now struggling to grow our family, when we had a perfect boy,” Becky said. “There was an accident that could have been prevented.”
Jessica Bartlett can be reached at jessica.bartlett@globe.com. Follow her @ByJessBartlett.