Mother reveals how doctors wrote down her son with Down syndrome before a diagnosis led to his death
A shattered mother has fought tears and recalled a series of heartbreaking assaults, says doctors who inflicted her disabled son who led to his death.
Rachel Browne told the Royal Commission for Violence, Abuse, Neglect, and Exploitation of People with Disabilities in Sydney that hospital staff wrote off her son Finlay as “just a grizzly child with Down syndrome.”
The 16-year-old from Bathurst in New South Wales died after a terrifying 71-day hospital battle in 2016 with 12 abdominal surgeries and 65 days spent in intensive care for children.
At an earlier occasion at Bathurst Hospital, Ms. Browne said doctors seemed offended that she was prepared to commit her child.
Rachel Browne (photo) told the Royal Commission for Violence, Abuse, Neglect, and Exploitation of People with Disabilities in Sydney that doctors wrote “Trisomy 21” or Down Syndrome as the cause of the death of her son Finlay
“He felt that Finlay … was just a whingey child and suggested that I go home and give him more Panadol and the antibiotics go into effect and basically just let him get over it,” she said. ABC reports.
The mother said that she then received a disturbing letter of resignation for her doctor.
“It referred to Finlay as a grizzly child with Down’s syndrome who had poor oral hygiene and I thought that comment was not relevant at all why we were there,” she said.
Finlay, who also lived with autism, quickly fell ill in September 2016, suffered terrible pain, vomited and had blood in his stools and was rushed to Bathurst Hospital.
When they arrived, Browne said that Finlay, so weak that he needed to be held, fell to the ground.
“The triage nurse, when I looked up, rolled her eyes and I thought,” That’s it, we’re not getting the help we need, “she said.
Mrs. Browne said that as soon as they saw a doctor 45 minutes later, the health professional stood with his back Finlay and did not speak directly to him until asked.
Finley Browne, died in 2016, 16 years old, after a gripping 71-day battle at the hospital that underwent various operations
She said she was told that a special children’s helicopter would take her son to the Sydney Westmead Children’s Hospital for emergency surgery, but he never arrived.
Instead, her son was operated on later that night and flew down the next morning, where he underwent further surgery.
Mrs. Browne said the experience made her feel like her son had been written off because there seemed to be a clear lack of urgency to look after him.
After 12 operations, most of Finlay’s small intestine was removed and the family was told he would never eat or drink again.
As a result of his injuries, Finlay’s liver and kidneys began to stop.
“He kept saying, Mom, I want to go home … I wanted to take him home, but it became clear that if he recovered, he would have no quality of life,” Mrs. Browne said.
After a final operation it was decided to withdraw the treatment and he died in December 2016 with his family around him.
On the death certificate from Finlay, which was shown to the committee, “trisomy 21” or Down’s syndrome is mentioned as one of the causes of death.
Earlier this week, Ms. Browne told the committee about the last time her son left home when they went to the hospital.
“He put an arm around us, and he looked up and said,” I love your mom, I love your dad, “she said.
Mrs Browne, she did not want to discourage people with cognitive and intellectual disabilities from seeking medical help, but better education was urgently needed within healthcare.
Mrs. Browne approached Bathurst Hospital staff (photo) after the death of Finlay and filed complaints with them and the NSW Healthcare Complaints Commission
She had received questionable comments from medical professionals throughout Finlay’s life, including from a doctor at the hospital the day he was born.
“The doctor said he felt something was wrong with Finlay and I had noticed that I knew I had Down’s syndrome, he told me it was good because I was young and I have more children could get it, “Browne said.
Six months after Finlay’s death, Ms. Browne addressed Bathurst Hospital staff.
“I wanted to let clinicians know what the consequences were of doing nothing, not only for Fin, but also for his family, his friends,” she said.
“That this young man had a life, a well-lived life – he was just not a person with a disability, he was a person.”
The committee continues.
WHAT IS DOWN SYNDROME?
Down syndrome is a genetic disorder that usually causes a certain degree of learning disability and certain physical characteristics.
- Sleepiness at birth
- Eyes that slope downwards and outwards
- A small mouth
- A flat back of the head
Screening tests can expose Down syndrome during pregnancy, but are not completely accurate.
It is caused by an extra chromosome in a baby’s cell due to a genetic change in the sperm or egg.
The risk increases with the mother’s age.
A 20-year-old woman has about one in 1500 chance of having a Down’s syndrome baby.
Women between 40 and 40 have a 100% chance.
There are no indications that women can reduce their risk.
Down syndrome has no cure.
The treatment is aimed at supporting the development of the patient.
People with Down syndrome are more at risk for health complications such as heart conditions, hearing problems, thyroid problems and recurring infections.
Source: NHS Choices