Join Austin's courageous fight against Congenital Heart Defects
Eight-year-old Austin Johnston is a "livewire" of a child who enjoys playing football and is hoping to become a black belt in karate. However, his journey was tough for him and his family as he was born with a congenital heart defect (CHD).
Austin is the first child of Kathryn and Gareth Johnston, of Grantham, and his journey into this world was far from plain sailing.
At just five weeks pregnant, Kathryn had a bleed with him, and the couple thought they had already "lost him," but an early pregnancy scan "saw his heartbeat flickering away absolutely wonderfully".
The next couple of scans went by, and no problems were detected. However, at just 20 weeks into her pregnancy, Kathryn and Gareth received the news that would alter the course of their lives.
During a routine ultrasound at Peterborough City Hospital, they learned that their unborn child had a congenital heart defect.
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The diagnosis cast a shadow of uncertainty over what should have been a joyous time, but the couple's love and determination prevailed.
Austin's early days were fraught with challenges. Born at 36 weeks and four days, he faced surgery at just five days old to address a coarctation of the aorta, a condition that required urgent intervention.
"He spent about two minutes having a cuddle before being whisked straight to the NICU in Peterborough, where he stayed for his first three days. Then, on Sunday - Father’s Day - we got transferred to Great Ormond Street Hospital," said mum Kathryn.
"Two days later he had his open-heart surgery."
The ordeal of saying goodbye to their newborn son as he was wheeled into the operating theatre at Great Ormond Street Hospital remains etched in their memories.
"Nobody had managed to get down to London in time so Gareth and I were there alone, we said goodbye to Austin on our own."
"You worry that you're not going to bring the baby home with you, especially after we had such a devastating bleed at five weeks.
"You worry that here you are again and then you worry as a mother that you did something wrong because a baby's heart is formed before you even know you're pregnant. So you worry that maybe there was something that you did wrong with your baby when you first fell pregnant.
"Research has shown for many years that there's nothing really you can do, but it doesn't stop you feeling guilty."
Yet, amidst the fear and uncertainty, they clung to hope.
Miraculously, Austin defied the odds and returned home at just 13 days old, a testament to his resilience and the unwavering support of his family.
The couple are immensely grateful for the support they received from Great Ormond Street, who gave them a place to stay while they were in London.
"Without that there is no way Gareth and I would have ever been able to afford to stay in London for two weeks.
"Some of these babies are in there for months, if not longer, so without the support and the funds raised from some of these charities to be able to support parents like this.
"We would never have been able to stay with Austin and that would have just been devastating."
However, the journey was far from over. Austin's ongoing battle with CHD necessitated regular check-ups and vigilance, but his spirit remained unbroken.
Among his CHDs, he has a bicuspid aortic valve, where two valves do the work of three.
Doctors say this will mean his body will tire quicker but not until he’s much older.
He also has a hole in his heart, known as a ventricular septal defect, which is slowly getting smaller.
As Austin grew, so did his parents' determination to raise awareness for CHDs.
"When Austin went to school we met three other children with CHDs and I found it amazing that in such a small community like Grantham you would find so many children with CHDs," said Kathryn.
"It’s such an invisible illness until you talk about it because they just bear the scars on the inside until they become drastically poorly.
One in 100 babies are born with a CHD and many parents can be unaware until the child needs to go to hospital due to a lack of awareness. The couple have shared their story to mark CHD Awareness Week this week and the British Heart Foundation’s Heart Month, which takes place throughout February.
"We were just one of the lucky ones whose sonographer had seen CHDs so many times on sonograms, so and that's why I love the Heart Month, because it means that I can put Austin's story out there and really raise awareness for other mums who don't know where to look for the support."
Kathryn's advocacy has since taken on new meaning as she shared Austin's story on social media platforms like Instagram, reaching out to parents who may feel isolated or overwhelmed by their child's diagnosis.
Through her heartfelt posts and candid reflections, she offers a lifeline to those in need of support and encouragement.
"My advice to other parents is that there is support out there and that the road looks scary and to stick with it, to find the support.
"Come find my page and I'll send you on the way or go find Tiny Tickers who are a great
page for support, they've got lots of stories.
"These babies are heart warriors, and they're warriors for a reason."
Austin's journey is a testament to the power of love and community, as his parents' efforts to raise awareness for CHDs have garnered widespread support.
From fundraising initiatives to engaging with organisations like Tiny Tickers, they are champions for change, ensuring that no family faces the challenges of CHDs alone.
Today, Austin is a thriving eight-year-old with boundless zest for life.
Despite his ongoing medical journey, he embraces every opportunity, from football to karate.
“Austin is a superstar with his CHD,” said Kathryn.
“He’s such a livewire.
"He’s a very active little boy, and we’ve always kept it that way so he does all the sports he wants to and it doesn’t impact him in any way.
"He's so he's just very active, so it's not really holding him back at this moment in time, and hopefully, it won't ever hold him back."
Austin has three siblings, all of which were born “heart-healthy” with no issues.
As Heart Month unfolds, Austin's story serves as a poignant reminder of the importance of awareness, early detection, and community support in the fight against CHDs.
