2023 John Curtin Medallist Joanne Beedie.
Author | Carmelle Wilkinson
When Joanne Beedie and her husband Scott found out they were pregnant with identical twins seven years ago, they thought they had won the lottery.
With the rare occurrence happening in just three to four births in every 1000, this year’s John Curtin Medallist said she felt like the luckiest person in the world.
Elated to be giving their two-year-old son Archie not one but two younger brothers, Joanne breezed through the first trimester with ease.
That is, until a routine scan at 17 weeks, revealed Joanne had Twin-to-Twin Transfusion Syndrome, a rare disease impacting 10-15% of identical twin pregnancies.
“I couldn’t help but feel extremely unlucky in that moment,’’ she said.
“Despite having surgery the very next day at King Edward Memorial Hospital (KEMH), we lost one of our boys, Logan, at just 21 weeks.”
Six weeks later, on Easter Sunday, Joanne was rushed to hospital with excruciating pain radiating into her upper back.
Despite some rest and a little morphine, the pain intensified.
“It was a total blur, one minute I was in terrible pain and the next I felt like I needed the toilet and when I reached down, I could feel the top of Lewis’s head,’’ she said.
“I remember hitting the alarm and screaming for help.”
A few minutes later her twins were born, and Lewis was rushed to the neonatal care unit, where he spent the next few days fighting for his little life.
Sadly, Joanne’s story isn’t isolated.
Each year in WA, about 2200 babies are born preterm and admitted to KEMH’s neonatal intensive care unit, requiring life-saving treatment.
“During Lewis’ time in the NICU, and with the help of the amazing medical team, he battled on, beating challenge after challenge, putting on gram after gram,’’ Joanne said.
“We celebrated events like coming off jaundice lights, reaching 2 kgs, moving off breathing support, his first bath, removing the feeding tube and trying on his first baby kilt.
“After twelve and a half weeks in hospital, we were finally able to bring Lewis home to meet his big brother Archie.”
Joanne, Scott and Archie Beedie, ready to take Lewis home from hospital.
Joanne said watching him go from strength to strength, wolfing down his food and developing his infectious laugh, got her thinking could they possibly turn their traumatic experience into something positive?
“It’s hard to put into words exactly how impactful and difficult that time was. But we didn’t want Lewis’s first weeks of life to define him or the unimaginable grief of losing a child to swallow us up,’’ she said.
“We wanted to take what we had learned on our NICU journey and really help other families facing a similar challenge.”
With that – Helping Little Hands was born.
Founded by Joanne and Scott and fellow NICU parents Kate and Adam, the charity delivers a range of family-centred services to assist parents on their NICU journeys.
Providing both emotional and practical support, Joanne said Helping Little Hands acknowledged that the best medicine for a premature and sick baby was time with their parents.
“From experience we know that this is a very difficult and stressful time for families, so any assistance, whether that’s a petrol or fuel voucher, a warm meal or financial assistance to purchase items like a car seat can ease some of this pressure,’’ she said.
“We also found from our own time at NICU that parents spend hours at their child’s crib side and forget to eat.”
With that in mind, one of the first services introduced through Helping Hands, was Dinner’s Ready, created with support from local Wembley business Blue Spoon.
Targeted at long-stay families, with other children at home, isolated from extended family or under financial stress, Dinner’s Ready provides families with delicious and nutritious meals, snap-frozen and ready to reheat.
“The service alleviates the stress of supermarket visits and cooking, and gives families more time with their babies,’’ Joanne said.
Helping Little Hands also keep parents well nourished, by refreshing the parent lounges at KEMH, Perth Children’s Hospital and Royal Darwin Hospital with complimentary fresh sandwiches, healthy snacks, fruit, soup packet and coffee.
Joanne with a family at King Edward Memorial Hospital.
Joanne said while every parent’s NICU journey may be different, it was important they knew they there weren’t alone.
“Over our twelve weeks at KEMH we saw many parents come and go. Some just for a few days while others were just starting their long-haul journey,’’ she said.
“We’d move around each other about eight to ten hours a day. Many juggling work and family life.”
Joanne said sitting there every day watching her little boy under the bright lights with tubes, then seeing happy families walking into the main hospital ward with balloons welcoming a new arrival, would tug at her heart.
“It was really painful to see, especially when we were struggling,’’ she said.
Looking back on that period, Joanne finds it hard not to get choked up.
“I know we aren’t the only ones to go through something like this. And you only have to ask around to hear stories about other babies who started their life at KEMH NICU,’’ she said.
Now a mum of five, Joanne’s commitment and compassion in helping families with a premature or sick baby through the rollercoaster of their neonatal journey’s earned her the prestigious John Curtin Medal at the university’s Alumni Awards this year.
“It was an absolute honour to be recognised at such a wonderful event, with Curtin’s most talented and successful alumni,’’ she said.
“It was incredibly humbling standing in their presence. It was an evening of reality pinching as I heard my name, work and qualities aligned with those of John Curtin himself.”
Joanne Beedie being awarded the John Curtin Medal at the 2023 Curtin Alumni Awards.
Joanne said her professional and personal drive was fuelled knowing Helping Little Hands were making a tangible and lasting impact on the families they support.
“Who knew delivering homemade gingerbread cookies to the doctors, nurses and staff at KEMH on Christmas Day that first year Lewis came home, would evolve into the charity it is today,’’ she said.
“My children are also immersed in the charity, helping deliver food or label items. I like to think we are helping set a good example as a family and showing them the importance of having good values.”
Joanne said taking Lewis with her on deliveries was a beautiful encouragement to other parents, showing them, it does it get better, and your child can leave hospital one day and lead a normal happy life.
“Lewis is the kindest, sweetest and funniest seven-year-old,” she laughed.
“He has an emotional understanding beyond his years and has this quiet determination, which says a lot about his character.
“A couple years ago he ran his first cross country at school, and despite being at the back of pack, he never gave up. Running the entire kilometre race at his own pace.
“He knows he’s a twin and often asks about Logan, which isn’t easy.”
Joanne said her children often talk about him and every year place a special bauble with his name on their Christmas tree.
“He will always be a part of our family, so we feel it’s important to acknowledge him in a sincere way,’’ she said.
Joanne, Scott and their children place a special bauble for Lewis on their Christmas tree each year.
Through Helping Little Hands, Joanne is currently advocating to change the proposed location of Perth’s new NICU.
Since its announcement earlier this year, senior clinicians from several WA hospitals have condemned plans to relocate Perth’s new maternity hospital to Murdoch, citing doing so would force doctors “to work in conditions of unacceptable risk”.
Meetings between WA Health Minister Amber-Jade Sanderson, WA Health Director General David Russell-Weisz and staff at PCH, KEMH, Osborne Park and Fiona Stanley hospitals remain ongoing.
For more information please visit the Helping Little Hands website.
Author | Carmelle Wilkinson
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