PLYMOUTH - Becky Kekula had always dreamed of building a family. When she gave birth to her son, Jackson, in August of 2021, she fell in love at first sight. "I was so excited the day I met him," Becky said. "I was so excited to see what we could do with an addition to our family and all he was going to accomplish in the world."
Becky and her husband, Ryan, both have dwarfism. Jackson was born with it too. Almost immediately, Jackson started experiencing sleep apnea, something Becky said is not uncommon in children born with dwarfism.
Jackson would require oxygen around the clock for the first few months of his life, but he started showing signs of improvement. In November of 2021, the Kekulas took Jackson for his first car seat test and sleep study at Boston Children's Hospital. Jackson would end up falling short on the test, but he was able to move off of breathing assistance for part of his day. He would still require it to sleep.
In February of 2022, the Kekulas would head back to Boston Children's Hospital for another car seat test and sleep study, of which the family says came at the recommendation of the team at BCH.
A few hours into the sleep study, Jackson's oxygen levels started to drop on the monitors. The Kekulas said the nurse blamed faulty equipment for a few hours, resetting and adjusting the machines periodically. After a few hours, the Kekulas claim the nurse finally checked Jackson for a pulse. He had nearly coded. "They were able to revive him and get a pulse," said Ryan. "At that point there had been a severe traumatic brain injury."
And so began a series of 12 days very few can fathom. Jackson had been placed on life support. His condition was not improving. "How do we say goodbye to our son," Ryan recalled asking. "Or how do we bring him home and make the best of this? It was a decision that we weren't prepared for."
On March 2, 12 days after they walked in for the sleep study, Jackson Kekula passed away. Becky and Ryan decided the time had come. "We went from doing a routine study in February, to March 2nd saying goodbye, to March 3rd, calling the funeral home," Becky said.
The Kekulas filed a lawsuit against Boston Children's Hospital for the handling of their son's care. Last month, BCH settled the case for $15 million.
But for Becky and Ryan the lesson, the legacy, of Jackson's story lies within all of us opening our minds. "We are two adults with dwarfism," said Becky. "We are not always taken seriously in the world. There could've been moments in that hospital where people hadn't seen people like us before and they didn't know how to ask certain questions."
Boston Children's Hospital sent WBZ-TV a statement for this report expressing their continued condolences to the Kekulas. The statement read:
"We express our deepest condolences and apologize to the family for the loss of their son. Following this incident, we immediately stopped all sleep studies and began a thorough review of what occurred. We examined our policies, staff training, competencies, and all systems that support sleep lab studies, including scheduling, ordering, triaging, and performing the actual study.
"We identified and implemented several improvements for how we conduct sleep studies, including a revision of responsibilities of team members, hands-on skills training and education for sleep lab staff, enhanced sleep technologist orientation and ongoing training, modification of the ordering and triage process that assesses potential risks to patients, and a review of the environment in which testing is conducted. After this review and implementation of these improvements, sleep studies were reinstated in a phased manner to ensure patient safety."
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