Parents of premature babies ‘petrified’ as RSV risk looms

An RSV treatment is now funded for more high-risk babies, but some parents of preemies who aren’t eligible are in selfimposed isolation out of fear. By Hannah

PARENTS of premature babies unable to access funded RSV treatment are ‘‘petrified’’ ahead of winter, causing some to hunker down in self-imposed isolation.

A significant outbreak of respiratory syncytial virus last year saw hospitals flooded with sick babies, prompting Pharmac to this year widen access to palivizumab, an injection given once a month while RSV is in the community to protect high-risk pe¯ pi (babies).

Last winter, mother-of-two Emma Taylor’s healthy 2-year-old – who was born at full term – was in hospital with RSV for three days and on a drip because of dehydration. The New Plymouth woman said she was ‘‘terrified’’ about what RSV could do to ‘‘massively at-risk’’ younger son Beau, who was born almost 15 weeks premature.

While Beau is eligible for funded treatment, Taylor and other worried parents question why more vulnerable babies can’t access it as the health system braces for an influx of respiratory viruses.

RSV is a highly contagious, common respiratory virus. For healthy adults and older children, symptoms are often mild, similar to a cold. However, infants born early or with certain risk factors (such as being Ma¯ ori and

Pasifika) are more likely to develop severe RSV-related illnesses.

A baby is premature if born before 37 weeks, when lungs are fully developed. Any birth before

32 weeks is considered very early. Under the widened criteria, infants born during the past two years with severe lung, airway, neurological or neuromuscular disease requiring community ventilation (among other conditions) will be eligible for funded treatment from June 1 to December 31, 2023. Infants born during the past 12 months at less than 28 weeks gestation or at less than 32 weeks who either have chronic lung disease or are Ma¯ ori or Pacific are also eligible.

Parents of preemies were ‘‘terrified’’, Taylor – involved with the Mums of the NICU support group – said.

‘‘A lot are not taking their kids out of the house . . . taking their older children out of daycare’’ and ‘‘hunkering down’’ to avoid what they fear could be a serious threat, she said.

Babies born at 32-33 weeks were still ‘‘so vulnerable’’, she said: ‘‘For them to be excluded is really hard’’.

Geraldine Everist’s son Jack, who was born at 32 weeks, caught RSV last winter only a month after leaving neonatal ICU. Then 8 weeks old, he was in hospital for two weeks and in intensive care for four nights. He had bronchitis and a partially collapsed lung.

Everist said she believed Jack was ineligible for funded treatment this year. In a house of four children, it ‘‘feels inevitable’’ they would encounter RSV, flu, or Covid-19, she said.

‘‘That’s quite scary for me, having been through it once,’’ the Wellington woman said. ‘‘My biggest thing is how many other 32-plus-weekers will have to have that same awful experience . . . For other little babies it will be a really hard road.’’

Pharmac chief executive Sarah Fitt said while it was ultimately Pharmac’s role to decide what was funded and for whom, eligibility criteria for palivizumab was guided by ‘‘robust’’ advice.

Consultant paediatrician Dr Thorsten Stanley said the success of palivizumab varies (studies show an efficacy of 45-82% against hospitalisation for high-risk infants) and treatment (given into muscle) can be ‘‘very unpleasant’’.

Stanley said the eligible group was similar to what is done overseas.

‘A lot are not taking their kids out of the house . . . [and] taking their older children out of daycare.’ EMMA TAYLOR