Jake Lampert loved music, games and keeping fit. He also had a rare genetic condition, Friedreich’s ataxia, and connected with people all over the world on social media who shared his condition.<\/p>\n
He was diagnosed at 13 with the progressive neuromuscular disease, which affected his ability to walk, and progressively, his spine.<\/p>\n
Last year, at age 27, the curvature of Jake’s spine reached the point of needing surgery.<\/p>\n
“Jake had been keeping himself actively fit,” his mother Jules Lampert said.<\/p>\n
“But his spinal curve was 82 degrees. The aim of the surgery was to re-correct that curve back to at least 40 degrees.<\/p>\n
“The decision had been made after over 10 years of seeing his spinal surgeon at Royal Perth to go ahead with correction to enable Jake to have a longer life span.”<\/p>\n
Seven days after Jake’s surgery in May 2024, his parents were forced to make the heartbreaking decision to take their son off life-support.<\/p>\n
<\/p>\n
Jake Lampert was diagnosed with Friedreich’s ataxia when he was 13. (Supplied: Jules and Brad Lampert)<\/p>\n
Post-operative decline<\/p>\n
Jake’s father Brad Lampert said the spinal surgery itself was very successful, but after his return to the ward his parents became progressively more concerned about his care and recovery.<\/p>\n
“Jake was in ICU for less than 24 hours after major surgery,” Ms Lampert said.<\/p>\n
“We were told that he would be in there for at least two days. We were concerned that he was being released early from ICU.”<\/p>\n
After he was moved onto a general ward, the Lamperts immediately became concerned that their son wasn’t receiving the appropriate level of monitoring.<\/p>\n
“He was actually meant to have a camera and everything set up above his bed so if anything happened, they would be alerted straight away,” Brad Lampert said.<\/p>\n
“But he wasn’t. He was just put into a normal bed. He had no monitors on him. And he was basically just put into the corner of the room on a normal bed.”<\/p>\n
<\/p>\n
Jake Lampert was a keen gym-goer who worked very hard to keep fit before his surgery, his parents say. (Supplied: Jules and Brad Lampert)<\/p>\n
Initially, Jake could still speak to his parents.<\/p>\n
“He was heavily sedated. He couldn’t pick up a cup. That’s when my alarm bells started and Jake begged me. He said, ‘Mum, please don’t leave me here.’<\/p>\n
“And he was constantly sweating. Like constantly, profusely sweating.”<\/p>\n
The Lamperts said they continually raised concerns with nursing staff that their son’s condition was deteriorating and asked for his symptoms to be further investigated but felt they were not taken seriously.<\/p>\n
They said he also repeatedly begged for food but was told he could not have anything in his condition.<\/p>\n
His mother said it was only when her son was returned to the ICU that a gastric tube was put in to provide nutrition.<\/p>\n
Seven days after his surgery, Jake Lampert died.<\/p>\n
“We had to turn his life support off, and we couldn’t even say goodbye because they induced him into a coma,” Ms Lampert said.<\/p>\n
“They put him into a coma when we weren’t there. Without our knowledge,” Brad Lampert added.<\/p>\n
Jake’s death is now the subject of a police and coronial investigation, and his parents have not been given a cause of death yet.<\/p>\n
Hospital investigation<\/p>\n
In a statement, East Metropolitan Health Service chief executive Lesley Bennett said the service extended “sincere condolences to Jacob’s family and loved ones”.<\/p>\n
“While we do not have permission from the family to comment on specific patient care details, I can confirm Jacob’s death was thoroughly investigated by a panel of clinicians,” she said.<\/p>\n
“The panel concluded that while there were some incidental findings of opportunities for improvement in care, none of these were considered contributory or causative to Jacob’s death.”<\/p>\n
<\/p>\n
Jake Lampert’s death at Royal Perth Hospital in May 2024 is still under investigation. (ABC News: Andrew O’Connor)<\/p>\n
Call for greater monitoring<\/p>\n
The Lamperts are speaking out because they are deeply concerned that their son’s disability was overlooked when it came to his post-operative care.<\/p>\n
“We don’t want our son’s death to go in vain,” she said.<\/p>\n
“People with rare conditions and disabilities need to be acknowledged in the health system, and not ignored.<\/p>\n
“With Friedreich’s ataxia, they have to be monitored differently. They have to have certain levels of fluids.”<\/p>\n
<\/p>\n
Jules and Brad Lampert are calling for greater consideration of patients with disabilities in hospital. (ABC News: West Matteeussen)<\/p>\n