A mother who lost her daughter to a severe genetic disorder said the recent initiative from the Department of Health to offer spinal surgeries to children abroad is “too little too late”.
Lynn’s daughter Daisy passed away in January – two weeks before her 11th birthday.
She told Lunchtime Live her daughter was a “warrior”.
“She battled time and time again,” she said. “We had five episodes where Daisy was given pretty much 24 hours – and she fought through.”
Daisy’s primary condition was a genetic condition called Rett syndrome – a “combination of Parkinson’s, epilepsy, autism and cerebral palsy”.
She also had a mitochondrial disease, needed non-invasive ventilation and was “wholly incapacitated”.
Lynn said her daughter was non-verbal – “but my God, Daisy could talk”.
“She used her eyes for everything,” she said.
Spinal surgery waitlists
Like other parents and their children, Daisy and her family had spent years waiting for spinal surgery.
Lynn explained Daisy’s spinal curvature was at 62% when she passed away.
“For the last year, Daisy had horrific bowel issues,” she said.
Towards the end of her life, Daisy had to have her tubes changed for feeding every 10 to 12 days due to spinal issues – while the normal time is six months.
Daisy should have had surgery three years before her death, according to Lynn – but due to the long wait they already had, she was no longer a candidate for anaesthetic.
Lynn said in the final stages of Daisy’s life, the intervention radiology team at Crumlin Children’s Hospital – particularly Eoghan Laffan and David Ray – provided Daisy with “love and support”.
“When no other team were there for Daisy, they pushed through,” she said.
‘So much anger inside me’
The Department of Health announced last week that children waiting for spinal surgery will be offered an agreement to travel abroad for operations.
Lynn said the initiative is “great” – but many children won’t be able to fly.
“It just feels too little, too late – well obviously in our case, it is,” she said.
“There are many others who never had the opportunity – it should never have gotten to that stage.
“I have so much anger inside me when I think about how our kids are treated by the health system here.”
‘I promised Daisy’
Lynn said she is currently working with HSE Chief Bernard Gloster to develop end-of-life care for children.
“There is no specific end-of-life palliative care for children who are choosing to die at home,” she said.
“That in this day and age is completely unacceptable, so I’m liaising with his team and the regional officers.
“I promised Daisy and I had promised a long time before that I would do everything I could as her mum to try and make life a little bit better for other families and other children.”
She said Mr Gloster has been “very decent” and “promised to do everything in his power” to help her – the “first positive engagement I’ve ever had with the HSE since Daisy was born”.
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