Parents of newborn with dwarfism who died after a sleep study at Boston Hospital awarded $15M

The parents of a six-month-old baby born with dwarfism have received a $15 million settlement from Boston Children's Hospital after he died during a routine sleep study in which nurses left him without oxygen for 20 minutes.

Becky and Ryan Kekula, of Plymouth, Massachusetts, brought Jackson in for the study and a car seat test, which is normal for babies with conditions like his, who had the most common form of dwarfism, achondroplasia, a condition that can complicate sleep issues. 

They had hope to resolve Jackson's sleep issues and check his ability to sit safely in a car seat, but instead lost their only child after the hospital staff made a series of errors, according to an investigation by the Massachusetts Department of Public Health as reported by The Boston Globe. 

During the procedure in February 2022, baby Jackson was left without oxygen for more than 20 minutes and suffered a catastrophic brain injury that left him on life support, according to the Kekulas' attorney Robert Higgins.

Over a year later, the family was awarded $15 million by the hospital, but they refused to sign a nondisclosure agreement and said they hope sharing Jackson's heartbreaking story will prevent similar tragedies. 

Becky and Ryan Kekula, of Plymouth, Massachusetts, received a $15 million settlement from Boston Children's Hospital after their son Jackson died following a sleep study

Baby Jackson was undergoing a routine sleep study but was left without oxygen for more than 20 minutes and suffered a catastrophic brain injury that left him on life support

The couple had moved to Massachusetts from Milwaukee in 2020 to be closer to family. Soon after, Becky became pregnant and gave birth to Jackson in August 2021. 

Both Becky and Ryan have the genetic condition achondroplasia and there was a 50 percent chance their baby would too. 

After Jackson was born, he spent time in the NICU where doctors discovered he had sleep apnea, interruptions in his breathing that caused his oxygen levels to drop while he slept. He also had breathing troubles while he was in his car seat. 

Babies with achondroplasia typically have larger heads, which cannot be properly supported when sitting up so their heads flop down and obstruct the airway. Their chests are also smaller, which forces them to take smaller breaths. 

The Kekulas took Jackson to the Boston Children’s Hospital for for a more thorough investigation of his sleep apnea, in an inpatient sleep study in their NICU, which was the first of its kind nationwide, according to the hospital website.'

'There are a lot of families [in the little people community] that go to that place,' Becky said of Boston Children's Hospital. 'I can't say what to do or not to do. But it's important for them to know what happened.'

The family's attorney Robert Higgins claims that during the sleep study, the staff failed to properly monitor Jackson's breathing and heartbeat, and instead focused on what they thought was an equipment malfunction.

The couple had moved to Massachusetts from Milwaukee in 2020 to be closer to family. Soon after, Becky became pregnant and gave birth to Jackson in August 2021

The family's attorney Robert Higgins claims that during the sleep study, the staff failed to properly monitor Jackson's breathing and heartbeat, and instead focused on what they thought was an equipment malfunction. Pictured: Becky with Jackson after the incident

Dr. Sara Toomey, senior vice president and chief safety and quality officer at Boston Children's Hospital, said in an interview with The Boston Globe, that outside of Jackson's death, the hospital has never had a serious adverse event in a sleep study.

The Kekulas had already been through the car seat test with Jackson and returned on February 18, 2022, for his follow-up and sleep study.

During orientation about the procedure, the hospital showed them a video that assured patients and families, 'There's nothing that hurts about a sleep study.'

In his car seat test, although his oxygen saturation had dipped periodically, Jackson wasn't given supplemental oxygen. 

For this test, the technician hooked Jackson up to a machine to measure his brain activity, a chest band to measure his breathing, and a pulse oximeter on his bare foot. A nasal cannula was placed under his nose, which Becky said she was told was to monitor CO2, not to provide oxygen.

Hospital vital sign records and video footage of the sleep study contributed to the investigation later viewed by Higgins, the family's attorney. 

Higgins said that at 9:42 p.m., a technician came into the room and briefly adjusted some of Jackson's monitoring gear. By 9:48 p.m., Jackson's oxygen had ticked down to 92 percent, 90 percent, 87, 85, 83.

By 9:50, Jackson’s oxygen had dropped to 65 percent — dangerously low — and he groaned with his breath. 

While there was no immediate response from the technician, Jackson's mother, who was on a couch nearby recalled feeling that something was wrong. 

'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.' 

Ryan and Becky with baby Jackson when he was born in August 2021

The hospital suspended inpatient and outpatient sleep studies for approximately five weeks after the tragedy, according to an investigation compiled by the Department of Public Health

The video showed a technician coming into the room and adjusting the pulse oximeter on the baby’s foot. Over the next 20 minutes, the technicians fussed with monitoring system before sounding the alarm that something was wrong with Jackson. 

The staff performed CPR on the baby and were able to restart his heart, but it was determined he had 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.

Jackson was kept on life support for 12 days before his parents before they decided to let him go. 

The hospital suspended inpatient and outpatient sleep studies for approximately five weeks after the tragedy, according to an investigation compiled by the Department of Public Health.

Several corrective steps were implemented, including 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.

'We took it extraordinarily seriously and have done our best to strengthen all of our systems,' Toomey 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.'