Parents awarded $15m after son with dwarfism dies in Boston hospital sleep study

The parents of a baby born with dwarfism were paid a $15m settlement from Boston Children's Hospital after their son died during a sleep study.

The baby, Jackson Kekula, died after nurses left him without oxygen for 20 minutes, according to the Boston Globe.

Becky and Ryan Kekula, Jackson's parents, brought him to the hospital for a sleep study and car seat test, which are commonly done for children with his condition. His specific type of dwarfism, called achondroplasia, can cause sleep problems.

The Massachusetts Department of Public Health investigated the death and found the hospital at fault after it made a series of errors that led to the child's death.

The procedure occurred in 2022. The child suffered catastrophic brain injury that required him to be put on life support after he was left without oxygen for 20 minutes, according to the family's attorney Robert Higgins.

The family was paid $15m to settle the matter but refused to sign an NDA, arguing that Jackson's story should be used to help prevent future incidents.

After Jackson was born, he spent time in a NICU where doctors learned he had sleep apnea, which causes breathing interruptions during sleep. He also had trouble breathing while he was strapped into his car seat.

Breathing problems can be common for babies born with achondroplasia because they are typically born with larger heads. The babies lack the strength to hold their heads up, causing them to hang forward and potentially disrupt their airways.

Mr Higgins said the hospital failed to properly monitor Jackson's breathing and heartbeat during the study. He said the staff was distracted by what they believed to be an equipment malfunction.

Ms Kekula said she could not say how families facing similar health issues should act, but wanted them to be aware of her story.

"There are a lot of families [in the little people community] that go to that place," Ms Kekula said about 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."

After the incident Jackson spent 12 days on life support before his parents made the decision to end the care after he showed no signs of improvement.