Nicky Rogers-Pirini and daughter Miya, 13, who was diagnosed with rheumatic fever in 2015. Photo/Supplied
Nicky Rogers-Pirini still chokes up thinking back to the day her daughter was diagnosed with rheumatic fever.
It was four years ago but the Opononi mother has an important message to share.
"Make sure you always get a sore throat swabbed and make sure you know what the result is.
"And trust your gut instincts - if you think there's something wrong, keep taking them back," she said.
Northland District Health Board statistics show there were 12 cases of rheumatic fever last year and 11 in 2017. It follows a drop in cases in 2015 and 16 - with only four cases each of those years compared to 18 in 2014 and 16 cases each in 2012 and 2013.
Rogers-Pirini's daughter Miya was one of the four who had rheumatic fever in 2015.
The family, who lived in Dargaville at the time, did everything right but share their story to create awareness.
Rogers-Pirini took Miya to the doctors four times before getting a rheumatic fever diagnosis.
The first was in November 2014 when Miya had a sore throat, she was placed on antibiotics. She took Miya again in February 2015 after she complained of a sore hip - bloods and an x-ray were taken but nothing alarming was found. Two weeks later Miya's throat was red and swollen - a throat swab came back negative but she still took 10 days of antibiotics. In April, Rogers-Pirini asked to be referred to an ear, nose and throat doctor as Miya had been lethargic and was missing her sports.
Over the next two weeks her health declined.
I felt a bit helpless because I knew something was wrong but I had been taking her to the doctor.
On April 23, 2015 - Miya's sister's fourth birthday - Rogers-Pirini called out to 9-year-old Miya to jump in the shower, but she said she couldn't walk.
"She was still giggling like her normal self. I was thinking does she just not want to go to school? But actually she couldn't walk because every single joint in her foot was throbbing."
Rogers-Pirini raced Miya to the Dargaville Medical Centre and a doctor told her he thought Miya had rheumatic fever and she needed to go to Whangārei Hospital for "special care".
After lots of tests at Whangārei Hospital a paediatrician told the family Miya had a complete heart block and needed to be airlifted to Starship children's hospital in Auckland.
"Miya was still talking and making us laugh but when the ladies from the chopper came in and put the big pads on her chest, that's when I think she was like 'what is happening to me?' and she started crying."
Miya was put in the Paediatric Intensive Care Unit and then transferred to the heart ward. She spent a week at Starship, one month at Whangārei Hospital, four weeks at Dargaville Hospital and a further six weeks at home.
"The first weeks were okay for her. Being in Whangārei with the playroom meant there were activities for her to do, but when she got transferred to Dargaville she was the only child in the ward.
"The nurses were amazing but she got really depressed because she knew her home was only a couple of streets away," she said.
Miya had to stop all physical activity until the end of that year when the paediatrician said she could return to playing sport.
Miya is now 13 and will have to have bicillin injections every month until she's at least 21.
But Rogers-Pirini said Miya is doing well.
She plays netball for Dargaville High School and when she heads home to Opononi on the weekend, where her parents live, she plays in the Bay of Islands competition.
"I don't think she likes people to know there's anything wrong with her. She just carries on like normal," Rogers-Pirini said.
Jeanette Wedding, Northland DHB's general manager of child, youth, maternal, oral and public health services and district hospitals, said the DHB believed the decrease in cases in 2015 and 16 was in part due to the initiatives in place to eradicate rheumatic fever - like throat swabbing programmes - as well as a degree of variation which can happen in any year.
She said the DHB was "very concerned" rheumatic fever cases were on the rise and said in addition to treating sore throats, it was important to address other issues such as poor housing, overcrowding and low incomes.
"As winter approaches we are aware of the pressures that are on some families who already live in crowded, damp houses.
"The high housing prices in Auckland has resulted in many people migrating back to Northland which will put additional pressure on families and the space they live in."
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Wedding said the DHB receives $867,000 per annum from the Ministry of Health for throat swabbing programmes and the DHB contributed an additional $260,000 to ensure that programme is in all decile 1 to 4 schools in Northland.
She said there is additional $396,000 per annum funding allocated to the Healthy Homes Programme in Northland which focuses on interventions to ensure homes are warm, dry and safe.
Montee Stehlin, East and South Auckland family support worker for Heart Kids New Zealand, works with families where children have suffered from rheumatic fever and said the illness had a long term impact on the children and their whānau, and there needed to be more support for those families.
"You know these kids are young and they've played rugby all their life and they get rheumatic heart disease - they can no longer do that. It affects their whole social identity, it affects everything about them and quite often there's nothing put in place to support that kid."
What you need to know about rheumatic fever
• It starts with a sore throat known as 'strep throat' – a throat infection caused by a bacteria called Group A Streptococcus - which if left untreated it can lead to rheumatic fever.
• Rheumatic fever is very serious and causes heart damage.
• Don't ignore a sore throat, take your child to a doctor or nurse straight away to get it checked - it's important.
• If your child is given a course of antibiotics, it's important they take them for the whole 10 days - even if your child feels better.
• Having more warm rooms and more sleeping spaces available means germs such as strep throat are less likely to spread.
Tips to achieve a warmer house
• Open your curtains during the day and close them at night. Closing curtains before sunset keeps the heat in, and the cold out, at night.
· Stop cold air getting into your home by stopping draughts around doors, windows and fireplaces.
· Open your windows for at least a few minutes each day. Fresh air helps to keep your home dry.
• Bugs are often shared while you are sleeping close to other people. To help stop the spread of strep bugs sleep in your own bed or top and tail.
· Wipe off any water that has collected on walls and on the inside of windows.
· Dry your washing outside or in the garage or carport. It keeps the dampness from your washing (which can build up condensation) outside of your home.
'You don’t want to be doom and gloom your whole life. That's just a miserable way to live'