I won't let Rheumatic fever affect my family like it did to me

29 August 2018

THERE is a history of rheumatic fever in Petra Hape’s family: her kuia (grandmother) contracted rheumatic fever at an early age and so too did her mum.

Petra recalls being about nine-years-old when she was diagnosed with rheumatic fever.

A few years before, her mum and dad had made the move from Muriwai to Manutuke to be closer to her grandparents, Petra remembers their whanau home being warm and dry and big enough for her and her siblings to each have their own bedroom.

Like her mother, it all started with a sore throat.

It was during the summer months and Petra recalls having to spend a considerable amount of time in hospital over Christmas.

When she finally got to go home, she was wheelchair bound.

Being prescribed painful bicillin injections added to her unwellness.

It was always a terrifying experience.

Petra wasn’t allowed to go to school for some weeks.

Her grandparents would take care of her while both her parents worked.

Every day, Petra would wait anxiously for her siblings and cousins to return home from school.

A keen sports fanatic, she recalls the sorrow she felt watching from afar, and not being able to join in. When Petra did return to school she thought she could do the things any child her age could do.

She fainted on her first day back.

Petra has vivid memories of her dad carrying her from the school sickbay and worrying about how this incident would delay her return to school even more.

At the age of 12 years, after another episode of fainting, Petra was confined to a monitoring bag which she carried around with her.

Much of her school and valued sports life was tormented by her illness.

All she wanted to do was be normal just like the other kids.

Receiving bicillin injections every month was a horrific experience.

Petra recalls having a couple of favourite nurses who were caring and gentle, whilst others were rough and didn’t seem to care.

This created fear and anxiety for her every month.

In her early twenties, Petra asked her doctor if she could switch from the bicillin injections to taking bicillin tablets due to having huge painful lumps and bruising after each injection, which also made sleeping a struggle.

At times she found it too painful to walk.

Almost two years later she reverted back to the injection because she kept forgetting to take her tablets, making her susceptible to other illnesses.

Petra recalls the doctors saying she would come off bicillin at the age of 18 years.

She was later told 20 years, and then 25 years, and then 30 years and yet, there was never an explanation as to why she had to stay on it.

At the age of 35 years Petra made the decision to come off bicillin and has not seen any negative health effects since then. She has not regretted her decision.

Although Petra had been receiving cardiology care since being diagnosed with rheumatic fever, during her pregnancies Petra was immediately placed under obstetric care while still receiving bicillin.

During her fourth pregnancy, Petra’s heart enlarged.

She recalls being in labour with one of her babies for 44 hours with no effect to her heart.

With her last baby Petra had stopped taking bicillin ,however, still under the care of a cardiologist and obstetrician.

Today, Petra continues to suffer from mitral valve regurgitation.

In her words, it’s “a leaky valve and heart murmur”.

She knows her limitations but tends to push the boundaries.

Petra remains vigilant with her own children, nieces and nephews and she makes sure if any of them get a sore throat they are checked straight away.

Working in health has helped Petra to understand her illness and although she continues to work full-time as well as her active involvement with Kohanga reo (immersion school) and Kura, Petra knows rheumatic fever will always be with her. To this day, being a loving wife and mum to her husband and children is important.

 

Preventing rheumatic fever

 

Petra has vowed to not let rheumatic fever get in the way. Her message to others is “getting checked early can prevent things from being much worse”.

Does your tamaiti (child) have a sore throat?

Get it swabbed.

If your child has a sore throat, take them to your local health professional to get tested.

It’s quick, easy and free.

Sore throat bugs mainly spread through the air when coughing and sneezing, so create as much space as possible between the heads of sleeping children.

Rheumatic fever is still present in our communities.

Maori and Pacific children and young adults aged 4 to 19 years-old are more likely to get rheumatic fever — especially if they have other whanau members who have had it.

Open your curtains during the day and close them at night.

Close curtains to keep the heat in, and the cold out.

Stop cold air getting into your home by preventing draughts around doors, windows and fireplaces.

Find out if your home is insulated. Insulation is one of the best ways to keep your home warm.

Open windows (ventilate) in the kitchen when you cook, and in the bathroom when you shower or take a bath, to let steam out.

Wipe off any condensation that has collected on walls and on the inside of windows to keep your home dry, and easier to heat.

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.

Use bleach or white vinegar to remove mould from ceilings and walls. Mould grows in damp and wet places and it can affect your family’s health.

If you have been checked for a sore-throat by one of the clinics and meet the criteria for follow-up; you may be referred to the Healthy Homes Initiative service who will contact you to organise a healthy housing assessment.

 

What happens if your child gets rheumatic fever?

 

Rheumatic fever has lifelong consequences for health, including years of monthly injections and possible heart valve replacement surgery.

Rheumatic fever can lead to rheumatic heart disease. This is where there is scarring of the heart valves. This stops valves from working properly.

Once diagnosed with rheumatic fever, a huge concern is that the future of the child has changed — quoted by Dr Lance O’Sullivan, Northland GP and former New Zealander of the Year.