Appeal Mum of girl with spina bifida says Government needs to support life-changing surgeries

The mother of a little girl with spina bifida has appealed to the Government to support the surgeries that would transform her and other children's lives.

Zoey Russell was born with spina bifida and hydrocephalus and underwent life-saving surgery as a baby, following a complication caused by her condition.

Parents Lorraine and Declan were told she would need further surgery around the age of two - but Zoey is now three-and-a-half and the family has no idea when it will proceed.

The young Wicklow girl is one of dozens of children around the country facing uncertainty amid lengthy waiting lists. Many parents have shared their stories in recent weeks in a bid for better services and more certainty for their kids.

"The Government needs to take care of the kids with spina bifida - they deserve a future as much as anybody else," said Lorraine.

"The Government needs to stand up and listen. No child should be left in pain, not in 2022. All of the work has been done for them, all they need to do is to fund it. Nobody should be left to suffer, not like that, and left in pain for years."

Lorraine also expressed dismay that families had to share their stories publicly in order to garner the attention of the State, having waited for years for news on surgery.

Additional funding of €4 million to help clear the backlog was announced this week, and support and advocacy groups have asked for clarity on the funding.

"It's very frustrating that we have to do this. This is 2022, we should have a better healthcare system. We shouldn't have to put ourselves out there, put our kids out there to get better services. There should be better services for our kids - it's that simple.

"We're just so fearful as a family that it's not going to be done and she's going to be left waiting longer and longer. The more that happens, the harder it's going to be. It's very frustrating for us as a family."

Zoey has been through a huge amount in her short life but remains a cheerful and mischievous toddler doted on by her family, including siblings TJ, Katie and Kian.

The family were shocked to learn of the little girl's health issues during a routine scan during pregnancy. Because she also had hydrocephalus, which causes a dangerous build-up of fluid in the brain, she had to have a shunt inserted to drain the fluid. Thankfully, said the family, that all went smoothly.

As a baby, she underwent major surgery to close a lesion on her upper spine caused by spina bifida. But the surgery didn't go to plan and had to be suspended when she went into cardiac arrest.

The family credits consultant orthopaedic surgeon Connor Green with saving her life through subsequent surgery more than a week later - now they are waiting for the further surgery that Zoey needs.

"We do now need to have a rod put in Zoey's spine. She needs the further surgery. They always said that they would do it when she was about two," said Lorraine.

The toddler also suffered serious illness following an RSV infection a couple of years ago, and her family say they were grateful to Irish charity Hugh's House, who provide accommodation for families in Dublin city centre. It meant they were able to remain close to the hospital where she was being treated.

Since that infection, she uses a 'bypass' machine at night to support her breathing.

"If Zoey stops breathing on her own it helps her breathe. Because of where her lesion is it helps her clear out all the carbon dioxide that she can't get rid of during the day, because her lesion is up so high it affects her lungs."

Despite all of the challenges she faces, Zoey is a vibrant little girl.

"She doesn't have much speech right now because of her hearing, but she uses sign language and loves Mr Tumble, a character who does sign language for kids.

"She'd buy and sell you! She'd hug a cactus, she loves hugging. She's so friendly. She's gas, everybody knows her. She's a dote but she's a devil too.

"As parents we fought for Zoey from day one and we'll never stop fighting for her."