Parents of newborn with dwarfism awarded $15M after child dies without oxygen during routine procedure

Parents of newborn with dwarfism awarded M after child dies without oxygen during routine procedure

By Jenny Anna Mathew

PLYMOUTH, MASSACHUSETTS: Boston Children’s Hospital has agreed to pay $15 million in settlement to the parents of a six-month-old baby after the child, who was born with dwarfism, died during a routine sleep study. Jackson Kekula was left without oxygen for more than 20 minutes during the procedure, causing a catastrophic brain injury that left him on life support. Jackson’s parents, Becky and Ryan Kekula, of Plymouth, Massachusetts, took him to the hospital to resolve his sleep issues and check his ability to sit safely in a car seat.

This was following the diagnosis of achondroplasia, the most common form of dwarfism, which can complicate sleep issues. The hospital had conducted an inpatient sleep study in their NICU, which was the first of its kind nationwide, according to the hospital website. In the wake of Jackson’s death, his parents refused to sign a nondisclosure agreement and shared his heartbreaking story, hoping it will serve as a warning and prevent similar tragedies. “There are a lot of families [in the little people community] that go to that place,” Becky said of the Hospital. “I can’t say what to do or not to do. But it’s important for them to know what happened.”

(Facebook)Ryan and Becky Kekula with baby Jackson when he was born in August 2021(Facebook)

What happened to baby Jackson?
When Jackson was born in August 2021, he had trouble breathing and sleeping. Doctors found out that he had sleep apnea and difficulty breathing in his car seat. This is common in babies with achondroplasia because they have bigger heads that fall down when sitting up, blocking their airways, and smaller chests that make them take smaller breaths. An investigation by the Massachusetts Department of Public Health found that the Boston hospital staff made a series of errors during the procedure in February 2022. The staff failed to properly monitor Jackson’s breathing and heartbeat and instead focused on what they thought was an equipment malfunction. The Kekulas’ attorney, Robert Higgins, claimed that the hospital staff’s mistakes caused Jackson’s death.

During orientation about the procedure, the hospital showed a video that assured patients and families, “There’s nothing that hurts about a sleep study,” reported Daily Mail. During the sleep study, Jackson was connected to a machine to monitor his brain activity, a chest band to track his breathing, and a pulse oximeter on his foot to measure oxygen levels. A nasal cannula was also placed under his nose to monitor CO2 levels. At 9.42 pm, a technician made some adjustments to Jackson’s monitoring equipment, and by 9.48 pm, his oxygen levels had dropped to 92 percent. It continued to dangerously drop, reaching 65 percent at 9.50 pm.



20 minutes without Oxygen

While there was no immediate response from the technician, Jackson’s mother, who was on a couch nearby, felt that something was wrong. The staff performed CPR on the baby and were able to restart his heart, but it was determined that he 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. “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.”


Video footage of the sleep study showed a technician entering the room and making adjustments to the pulse oximeter on Jackson’s foot. Subsequently, over the next 20 minutes, the technicians continued to adjust the monitoring system before eventually sounding the alarm that something was wrong with Jackson. The child remained on life support for 12 days until his parents made the decision to let him go.


The hospital suspended inpatient and outpatient sleep studies for about five weeks after Jackson’s death. To prevent similar incidents from occurring, the hospital implemented corrective measures, including providing training and simulation exercises for technologists, having a nurse evaluate their skills, improving documentation of doctors’ orders for sleep studies, and assigning nurses to oversee patient care during such procedures. “We took it extraordinarily seriously and have done our best to strengthen all of our systems,” Dr Sara Toomey, senior vice president and chief safety and quality officer at Boston Children’s Hospital, told The Boston Globe. “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.”

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