She’s a chatty little girl who’s almost three and delights in rolling up in her wheelchair to announce “I’m Lara Bayliss.”
“She loves talking to people,” says her mother, Sinéad. “She likes being in the middle of everything; she just gets stuck in, and off she goes. She doesn’t think there is anything wrong.”
But Lara was born with spina bifida and her health needs are complex. She also has the commonly associated condition hydrocephalus – fluid on the brain – for which she had a shunt, or drain, inserted at Temple Street hospital just two days after being delivered by Caesarean section at Holles Street maternity hospital.
“I remember being so relieved when she came back from surgery. I thought, ‘Brilliant, that’s the hydrocephalus sorted, we only have to work on the spina bifida now,’ ” says Sinéad. “I was so wrong; it turns out that VP shunts are devilishly tricky things.”
Lara is extremely unlucky to be on her seventh shunt now – with each procedure requiring anything from four to five days to three to four weeks in hospital.
Sinéad is grateful she and her husband, Mark, had some time to prepare for what lay ahead after being given the “shattering news” of their third baby’s condition at the 20-week scan – she had taken folic acid, which reduces the risk but is not guaranteed to prevent it – and she praises the ensuing prenatal liaison with Temple Street staff.
To an outsider, the burden of care sounds overwhelming but Sinéad, who works as a part-time administrator, makes light of it: “To us it’s just normal.” But she is aware of the impact of Lara’s disability on all the family.
Mornings are Lara's time with Sinéad, while seven-year-old Owen and five-year-old Tom are at school. As well as the daily exercises – "dancing" to Lara – therapeutic brushing and catheterisation of the bladder, there are clinics to attend both at Temple Street and at Lara's local service provider, Enable Ireland, in Bray, Co Wicklow.
Sinéad brings Lara swimming once a week and also to therapeutic horseriding.
Like any parent, Sinéad wants all her children to reach their full potential but she is clearly frustrated by what she sees as failures in the healthcare system to support this for Lara. “Most of the time I feel that help is not there, or too underfunded to be effective.” If you have an appointment twice a month, “you will maintain but you won’t progress”.
“There is nobody challenging us – or her – to improve. Everybody is saying that is how she is. I don’t feel you can do that yet; she’s only three. We don’t know where she could go or what she could do.”
If having more expectations than the system has for her daughter makes Sinéad a pushy mother, “I’m okay with that”, she says, although she doesn’t want to “tick off” those involved in Lara’s ongoing care.
Sinéad believes Lara could walk. “She can kick her legs, she can move; she does have sensation. I feel if we could get stuck in . . . I think we really could get her up on her feet and moving. It would be so good for her: her bones, her muscles, her whole toileting thing.”
But nobody seems willing to discuss Lara’s potential. “I don’t know if it’s they don’t want to upset you by saying no, this won’t happen or if they don’t want to build your hopes up by saying maybe and then it doesn’t happen.”
Aware of such parental frustrations, Dr Jane Leonard, leader of the spina bifida team at Temple Street hospital, says there is not enough evidence for how much intensive treatment can improve a child’s long-term function. “While it might improve and accelerate functioning in the short term, it may not alter the long-term potential.”
Nobody seemed to want to talk to Sinéad about Lara needing a wheelchair either, until she found out that in their area HSE policy was to provide one only at the age of five, at the start of school, so the family bought one when Lara was 20 months.
Difficulty securing equipment is a recurring theme. For instance, Lara waited a year for a standing frame. After numerous phone calls, it eventually arrived, made to a specification that was a year old. “You are talking about the difference between a one year old and a two year old,” says Sinéad. “It is that silly; it doesn’t make any sense.”