'Every minute counts': New parents feel ‘really lucky’ after baby survives Hib meningitis
Friday, 26 April 2024
An Auckland newborn spent six weeks in hospital with Hib meningitis, after contracting the disease when she was too young to be vaccinated.
Hib was once the most common cause of life-threatening bacterial infection in tamariki under 5 years, but is now “incredibly rare” because of immunisation, an expert says.
Health officials are concerned we will see increasing numbers of Kiwis becoming unwell with vaccine-preventable diseases due to “low” immunisation coverage.
Watching her 5-month-old daughter Romee play, Sophie Williams knows things could have easily gone another way.
In November 2023, Romee, then just a few weeks old, became unwell.
Williams, from Auckland, was in Ashburton visiting her mum, as her husband Josiah was working in Christchurch.
Over the course of the day, Romee became “super irritable”, and was crying a lot. Her breathing appeared more laboured, she was hard to wake, and “wasn’t interested” in feeding.
Williams checked in with her midwife throughout the day, and as soon as she noticed Romee had a temperature, took her to a local A&E clinic.
They were sent to Christchurch Hospital in an ambulance “straight away”, Williams said.
“She was pretty miserable. She was deteriorating before our eyes.”
In hospital, Romee was started on antibiotics, and tests revealed that she had Hib meningitis.
“I [was] relieved they’d found out what it was, it hadn’t really triggered for me what that meant,” Williams said.
It wasn’t until the next day, when a team of doctors came in, that it sank in just how serious Romee’s condition was.
She said they were told it was “lucky you came in when you did… as every minute, every hour counts with meningitis”.
Haemophilus influenzae type b (Hib) is a bacteria that can cause serious illness in young tamariki.
Meningitis is an infection and inflammation of the fluid and membranes surrounding the brain and spinal cord. It can occur due to viral, bacterial or fungal infection, and can be potentially fatal within hours.
Many people have Hib bacteria in their nose and throat without getting sick. Illness happens when the bacteria spreads, and creates an infection.
Hib was once the most common cause of life-threatening bacterial infection in children aged under 5, but has “almost disappeared” since vaccination was introduced in the 1990s.
Since then, the number of children hospitalised for Hib meningitis or epiglottitis (a potentially life-threatening inflammation and swelling of the epiglottis) has decreased by about 90%, the Immunisation Advisory Centre (IMAC) says.
In Aotearoa, Hib vaccination is given at 6 weeks, 3 months and 5 months (with a booster at 15 months).
Romee was too young to have received her first dose when she got sick.
In the early stages of Hib meningitis, a person typically feels unwell, with fever, headache and vomiting, according to Health New Zealand.
In babies, meningitis may cause poor eating and drinking, low alertness, vomiting and a high-pitched cry. Small pēpi may become unable to settle and dislike being held. They may have a bulging fontanelle (the soft spot on top of their head).
People who are treated and live after Hib meningitis can still have long-term complications, including deafness and brain damage.
One person in every 20 infected with Hib meningitis will die, even with early identification and treatment.
When Romee looked to be “perking up” after a few days in hospital, Williams thought the worst might be behind them.
But then Romee started having seizures.
Holding her daughter as she seized, Williams felt “powerless”.
“It was the worst thing in the world, I couldn’t do anything… if I could take that pain and give it to myself, I would [have], but I can’t.”
Scans found pockets of fluid and inflammation on Romee’s brain, her mum said.
They were being warned to be prepared, that Romee’s future might look different to how they’d pictured.
In those early days, Williams was too scared to ask what the outcome might be, but wondered whether her daughter was going to die.
“You go from the best day you’ve ever had [their birth], to 2-3 weeks later, the worst day – in the pits of potentially losing your child.”
In early December, the whānau were taken to Starship Children’s Hospital where Romee had surgery to drain the fluid on her brain.
After surgery, Romee’s seizures stopped, and eventually she was taken off anti-seizure medication.
The family marked their first Christmas with Romee in hospital, and had a “really great view” of the Sky Tower New Year’s Eve fireworks from their room.
“You take the silver linings.”
Romee was improving, and when another scan showed the fluid on her brain had improved and she wouldn’t need further surgery, her parents were “jumping for joy”.
On January 4, 2024, they got to go home — six weeks after going into hospital.
Two weeks later, after another scan, Williams said they were told Romee had recovered, and her PICC line (used to give fluids and medication) was removed.
“It was the best thing in the entire world… I will never forget that day.”
Romee’s development is being monitored, and so far she’s hitting all the milestones you’d expect, Williams said.
But there are a number of potential long-term consequences, some of which won’t become apparent until later, she said.
Williams said she’d never heard of Hib before Romee got sick, and didn’t know how and where she got it.
“It must’ve been the wrong place, wrong time. She was really unlucky.”
Between 1997 and 2023, 172 cases of Hib were notified in Aotearoa. Of these, 48 were cases with meningitis, the Institute of Environmental Science and Research (ESR) said.
There have been five deaths from Hib since 1997, of which two were in cases with meningitis, both aged 1, ESR said.
Williams wanted to emphasise the importance of children being up-to-date with their immunisations, and the protection it offers not only your child but those around them.
“We’ve been very lucky as a generation we didn’t see these effects of these diseases because vaccination has been around for so long”.
“I wouldn’t wish this upon my worst enemy… people need to be aware.”
GP and Immunisation Advisory Centre medical director, Dr Nikki Turner remembered clearly how “scary” Hib was early in her medical career.
While it hasn’t been eradicated, incidence of Hib is now “really rare, due to vaccination”, with cases dropping “enormously” since the programme was introduced, she said.
Turner said the Hib vaccine is among “the best we have”, as it helps provide both individual protection, and herd immunity.
However, Hib was an example of a disease that “could come back”, due to decreasing vaccination coverage in Aotearoa, alongside things like pertussis, measles, and pneumococcal disease, Turner said.
Recent data shows 81% of tamariki were fully immunised for age at 24 months in quarter 2 of 2023/24, down from 83% the previous quarter. For Māori, coverage at 24 months fell to 65%.
The National Public Health Service’s Jolene Proffit said it “is concerned that we will see increasing numbers of people becoming unwell with vaccine-preventable diseases”, including those caused by Hib.
Officials are also concerned about the risk of a measles outbreak.
In the past, there has been some protection of unimmunised people due to the “herd effect” of those who are immunised.
“The low rates of immunisation nationally mean this is no longer the case, and diseases such as measles could spread very quickly,” Proffit said.
Health New Zealand was prioritising efforts to boost immunisation rates.
“If your tamariki may have missed a vaccine or you’re not sure, talk to your healthcare provider about catching up,” Proffit said.
*If babies aged under 3 months develop a fever you should contact a doctor urgently, Healthify says.
If your baby is sick with sudden fever, shaking/chills, cough, shortness of breath, chest pain, stiff neck, disorientation and/or sensitivity to light, act immediately. Urgent hospital care is usually needed, as babies can get very sick very quickly.