'The system is broken,' says Cork couple fighting for disabled daughter
Olivia Whyte (second from right) with her sisters, Ava and Elena, holding their new baby brother, Tom. Their mother Gwen said: “The lives of her siblings have now also been altered forever. Who will care for Olivia when we are gone?" Picture: Olivia Whyte, GoFundMe campaign
A couple whose beloved baby girl was “robbed of her future” after undergoing what was supposed to be life-saving surgery have vowed to never give up hope of giving her a better life.
Gwen and Daniel Whyte, from near Blarney in Cork, are now preparing to fly to the US so that Olivia, aged two, can undergo specialist treatment at a leading clinic in Boston in the hope that she can fulfill her potential after being left with life-changing injuries.
“It is very difficult for us to share Olivia’s story,” Gwen said. “It is heart-breaking and so emotionally draining to tell it again and again. But this isn’t about us.
“It’s about Olivia. We adore every single thing about our amazing girl and will continue to do everything we can to help her.”
The couple has also criticised the "broken" disability support system here, where therapists are overloaded and understaffed.
Olivia was born during the first Covid-19 lockdown in April 2020 with a gap in her oesophagus - the tube that connects the mouth to the stomach. The condition is rare and the repair surgery is complex.
Gaps of a certain size can be repaired by surgeons in Dublin but surgical repairs to the gap in Olivia’s oesophagus could only be performed overseas.
Olivia spent the first six months of her life in the neo-natal, high-dependency unit in Temple Street in Dublin awaiting her surgery.
Gwen said she was a firm favourite with the nurses and staff, babbling, rolling and smiling, and that she reached all her milestones.
When she was six months old, she was transferred by the Air Corps to a hospital overseas for the surgery and was placed in a medically-induced coma and put on a ventilator for nearly three weeks afterwards to allow her oesophagus to heal.
But her family said she woke up “a different baby”, leaving them all devastated.
Gwen said Olivia lost all of her skills and had complete regression.
“She couldn’t do anything. She couldn't even smile. Three weeks later, Olivia started having seizures. We were told that these type of seizures were a medical emergency,” she said.
Tests and scans later confirmed that Olivia had epilepsy and brain volume loss.
Olivia has issues with muscle tone, balance and co-ordination, and the family has been told she will have to wear leg braces for the rest of her life. She will also need intensive therapies and specialist equipment - all of which are “excruciatingly expensive”.
Gwen said: “Before her surgery, Olivia’s brain was perfect. We have been told that Olivia’s brain volume loss is significant and will impact her life forever more. Olivia’s head growth was also normal pre-surgery. But post-op, it has now dropped below the chart.
“We cannot put into words the devastation we feel that our daughter will now need care for the rest of her life.
“She is 28 months old and still not walking or talking, pointing, clapping or even babbling.
“Right now, she should be running around, talking and laughing with her two older sisters and doting on her new baby brother.
“The lives of her siblings have now also been altered forever. Who will care for Olivia when we are gone? Where will she go to school? The worry for our beautiful girl is never-ending.”
But the couple say they will never give up hope for Olivia.
Gwen has not returned to work as a teacher and the couple is now relying on one income to support their family - Ava, aged six, Elena, aged four, Olivia and her baby brother, Tom, who is just 17-weeks old.
Gwen said now that Olivia has additional needs, she has for the first time direct experience of the shocking state of the services for people with disabilities in this country.
“The system is overloaded, the therapists are overworked and understaffed. The system is broken,” she said.
“I have been teaching for over 20 years and have taught many children with varying needs. But I didn’t get it - the lack of services. But I get it now.
“Disability services in this country are hugely under-resourced. The fight for our children is exhausting.
“No parent chooses this life. Many people question how do we do it? We just do.”
She said two of Olivia’s therapists have in recent months gone on maternity leave yet neither position has been filled.
“Olivia is one of the thousands of children who are not getting the services they need,” Gwen said.
As the couple continues to fight for services here, they have also secured a place for Olivia this autumn at the Napa Center in Boston where they hope she will benefit from a range of innovative therapies which will help her brain learn to form new pathways.
Places on this programme are like ‘gold’, Gwen said. “Many families apply year after year and do not get a place. We have to do this for Olivia.
“Olivia will be doing intensive physio, occupational therapy, and speech and language therapy this year. Our goals for Olivia this year are to start walking and communicating with us.
“This should not have happened to our daughter. But it did.
“It could have happened to any other family but it happened to us.
“We are incredibly determined to help our gorgeous girl.”
The family has launched a GoFundMe campaign to help fund the treatment and therapies at
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