I am inviting you into a story. And while it is our story, it is mostly Skout’s story and how his brave heart led us on a journey to learn of a deadly heart story that just might be one of our Country’s biggest, most shameful health issues.
Skout is the youngest of my five children. He is the exclamation mark on our family, born in the year of the Water Dragon under a supermoon.
I remember when I was pregnant with him, a beautiful old woman in her late 80s approached me, traced in this wonderful light, she held my round belly in her hands and told me that this baby was coming to change the world.
Inside of Skout, in the place where whispers carry memories, is a knowing and a kindness, a connection to more than just this place and time.
It is in his smile, in his dimple that sits like a trademark on his left cheek.
It is in his eyes and how he sees the world, in his voice and how he teaches me. Skout is radiant love and warmth, he exists in a kaleidoscope of colour and speaks of choosing me from a place in the stars.
The day before Skout was to turn 10 years old – 7 May 2022 - he limped from school on the Friday afternoon, ankle and foot ballooning out over the top of his sock, his jogger doing its best to keep the swelling contained. His ankle was close to double the size of what it should normally be.
I chastised him about playing rugby at school with kids who don’t know how to tackle properly, and he declared his innocence emphatically. We went through the usual check list … a trip, a rolled ankle, did he knock it, did someone step on it, were you bitten by a spider or an ant?
Skout assured me it was none of these. When we got home, I administered ice, elevation and compression and gave him some pain relief for the aching pain and an antihistamine just in case.
By bedtime Skout’s other ankle began to swell and, so too, his wrists and hands. Within 24 hours every possible joint on his body was swollen, aching and multiple pox-wart-like bumps had appeared on his elbows.
It became so overwhelming for his inflamed body that he had lost his appetite declining even birthday cake.
Living in Sydney it can be easily taken for granted how close and accessible a world leading children’s hospital is to our home.
On presentation at the emergency department Skout was wheeled straight through for examination and so it began the repetition of every little detail of the what, why, how, where, when of Skout's days were scrutinised.
Calming and consoling my frightened little boy while holding my breath waiting to hear negative results to the scary stuff like lymphoma and leukaemia … exhale.
“Has Skout always had a murmur in his heart?” He hadn’t had a murmur. Ever. Besides recurring ear infections and tonsillitis which saw them be removed at age four and grommets in at two my bunanay budyarra [little boy] was a healthy happy and very active child. It was a young resident doctor doing his rotation with the rheumatology team that put the pieces together. Swollen joints, rheumatic pox rash, changed heart rhythm and Strep A markers in the blood that had climbed from a usual 100 to close to 2000!
Chest x-rays, a long and detailed ultrasound on the heart, pain relief and high dosage of anti-inflammatory medication, Skout was admitted to hospital with suspected ARF [Acute Rheumatic Fever] – not seen at Sydney Children’s Hospital for nearly 40 years.
I’m not going to lie, I had never heard of ARF and innocently asked was it an old-fashioned illness like Scarlet Fever and quote, "like from Little House on the Prairie?".
ARF primarily affects the heart, joints, and central nervous system. Of these symptoms, the autoimmune cardiac sequelae are the most dreaded for it causes fibrosis of the heart valves, leading to crippling valvular heart disease, heart failure, strokes, endocarditis, and death.
To hear and comprehend this was happening to my child was highly distressing and baffling. To learn that ARF if not treated in time leads to Rheumatic Heart Disease [RHD] which causes permanent damage to the heart was a frightening consideration. ARF results from a throat or skin infection caused by Strep A bacteria and if not managed properly, it can lead to heart failure, disability, and premature death. It is also entirely preventable.
An entirely preventable childhood disease that now barely exists among white Australians but is the leading cause of death in Aboriginal and Torres Strait Islander children.
HEART FAILURE – Australia’s Shame
How do I know this?
Three of Skout’s specialist doctors at Sydney Children's Hospital had practiced medicine for some years in remote communities in the Northern Territory and Far-north-west Queensland and saw the debilitating effects ARF and RHD were having on Aboriginal children who did not have the access to expert medical knowledge, preventative penicillin, or basic hygiene resources like hand soap. How do I know this?
My husband Brett and I attended a NAIDOC screening of the documentary/film-led advocacy campaign TAKE HEART. DEADLY HEART hosted by producer and Rheumatic Heart Disease Australia [RHDA] CEO Aunty Vicki Wade and the Deadly Scientist OAM Corey Tutt.
The impactful and literally heartbreaking film is a campaign for change.
Taking care of one another is at the very heart of what community is, so to have a feeling of despair, hopelessness, and deep profound grief as each week two deadly little brothers and sisters die at the hands of a very preventable disease that other first world-developed countries have eradicated is a rage-filled disgrace.
Have a HEART
The book The Celestine Prophecy says there are no coincidences. I won’t get into philosophy but what I will get into is truth telling and problem solving.
Skout has recovered well thanks to the very fortunate access we have to preventative penicillin injections that he now has in hospital every 28 days for the next 10 years. Skout has a team of doctors guiding us in his health and healing and the best news of all as of two weeks ago Skout’s heart has returned to being a strong and very brave heart.
It is hard to find the right words to describe our gratitude, so we want to show it through our actions.
We want to share Skout’s story and invite people in to support and champion the eradication of ARF and RHD in Australia.
A collective empathy is needed more than ever before so please join us.
Take Heart. Deadly Heart Screening & Fundraiser
Brought to you by Skout & The Kirk Krew with their Addi Road Family
Saturday October 8, 2022 @ Addi Road Community Organisation Marrickville
5:30pm to 9:30pm
LIVE AUCTION: Holiday stays, one-of-a-kind signed Sydney Swans merchandise, and a dining experience like no other.
Tickets & Tee-shirts purchased via a link below:
https://events.humanitix.com/take-heart-deadly-heart-film-and-fundraiser
