When it comes to healthcare, we know that everyone has a unique story to share. At times these experiences are positive, while for others, experiences have left patients, their families and the clinicians who care for them feeling disappointed, hurt and devastated. Victorian health services do their best to prevent patients from being harmed and to continuously learn and improve. But we must recognise the personal impact serious adverse events.
These stories move us, and motivate and drive us to do better.
In January 2019, scans to investigate Anthony’s stomach pain showed a large abdominal tumour. He and his wife Frances and baby daughter Andrea went straight to the emergency department. The surgeons admitted him to hospital that day for emergency surgery to remove it. During the surgery, an artery in his bowel was torn. Although it was quickly repaired, Frances recounts the impact on her family as further complications arose from the torn artery, including a blood clot and a serious infection.
“Anthony was transferred to another hospital where he spent the next week in an induced coma in the intensive care unit with sepsis (overwhelming infection) from the dead bowel.
“Over the following months, he had 15 more surgeries to remove the dead bowel and repair the parts the surgeons thought might survive. In the end none of it survived, and he has been left with short gut syndrome and is dependent on being fed intravenously.
“My husband suffered a catastrophic injury which has been devastating for our family. The first several weeks were the most stressful, wondering if he’d survive at all. Then a long and difficult hospital stay, with nausea, vomiting, pain, setbacks and infections, and more operations.
“It was difficult to go from him being young and healthy with a new baby to having him clinging to life with a serious and debilitating illness. We cried a lot. We also felt very grateful for surviving and for being very close as a couple. It was hard to support Anthony’s relationship to our baby Andrea, but to also keep her from pulling at his naso-gastric tube or jumping on his stomach.
“There was also financial stress. I moved out of home to be close to him in hospital, so neither of us were working and had to put our baby in day care, which ate up all our savings. When we ran out of money, I had to go back to work, and it was hard being apart.
“We were assigned a contact person at the first hospital who was good at checking in with us weekly. Unfortunately it was months before the hospital started the open disclosure process, and we still feel like we don’t have all the facts. I felt like we were an annoyance to them. At one point we asked if we could speak with the treating surgeon but were denied because it would be upsetting for her.
“We made the step of requesting his medical records so we could learn for ourselves why it happened. We are angry when we think about it. But we are mostly happy to have each other, and that Andrea still has her daddy.
“It’s taken most of the year, but now we’re at a point where life is getting back to normal. Intravenous feeding, nausea and diarrhoea are becoming a part of life. He’s getting his strength back and we’re pretty happy to be where we are, considering how bad things got.”