Arlo is one of the little Ambassadors for the 2023 Good Friday Appeal. At just two years old, Arlo is sweet and social, radiating confidence and a cheeky sense of humour. By looking at him, you would never know that he was born with half a heart.
With an extremely rare condition called hypoplastic right heart syndrome, together with five other heart defects, Arlo’s cardiac diagnosis is described as complex, and his heart didn’t fully form on the right side.
On the day Arlo’s parents Bronte and Romi discovered there was something wrong with Arlo’s heart, Bronte’s pregnancy went from normal to high risk in a matter of moments.
At their 23-week ultrasound scan, Bronte vocalised that Arlo’s sister her eldest daughter Anelita was born with a hole in her heart which was discovered post-birth causing major complications. The sonographer took extra caution on the fetal echocardiogram, but it wasn’t long until her discovery that left her almost speechless.
Arlo’s journey at The Royal Children’s Hospital (RCH) started at 25-weeks gestation. Bronte and Romi were told of all the risks and complications and although filled with feelings of worry, they were confident their son was going to be in good hands.
Following Arlo’s birth at his first cardiology appointment, Bronte and Romi were advised that he would have to be admitted. Blue in colour and just six-days-old, Arlo was taken to the dedicated cardiac ward Koala and placed on oxygen and a nasal gastric tube.
This was the start of the family’s new reality—they knew their son was seriously sick and despite preparing in the months prior to his birth, nothing was ever going to prepare them for the days that were to come.
The hours following Arlo’s admission to the RCH were every parent’s worst nightmare. As Bronte digested her reality, she was in total shock about just how sick her son was and fainted right there on Koala in POD 1. With the help of the nurses nearby, Bronte was taken away via ambulance and four days later, Arlo was rushed away into his first emergency surgery.
Romi borrowed a wheelchair and was bringing Bronte back and forth between hospitals so that she could see Arlo. They had researched images of post operative surgery in a bid to brace themselves of what to expect, but again, nothing could ever prepare a parent to see their child on a ventilator after open heart surgery.
In the peak of the first COVID-19 lockdown, only one parent was able to visit at a time making it difficult for Bronte, Romi and Anelita to spend time with Arlo all together. Anelita’s grandmothers would take care of her at home while Bronte and Romi travelled back and forth every day between the hospital and home to see each of their children individually, merely crossing paths in the car park to hand over keys.
At four-months-old, Arlo was discharged following his open-heart surgery and a long stint in hospital. But unfortunately, this didn’t last long and three days later he was rushed back to hospital. He was blue and extremely unwell—without urgent surgery, he may not have survived.
With oxygen saturations at 30 per cent, Arlo was admitted to the RCH’s Paediatric Intensive Care Unit (PICU), Rosella. He had his second major surgery which wasn’t expected to be done until he was much older, closer to one-year of age.
While his surgery was deemed successful, Arlo faced another setback suffering major complications which landed him another four-month admission. Arlo was to be diagnosed with suspected bacterial meningococcal meningitis and he was lucky to have a smooth recovery. For Bronte and Romi, this was one of the scariest hospital admissions to date.
At this stage, Arlo had been home to meet his grandmothers and his sister for a total of three days. To the whole family’s much needed respite, the RCH were able to provide care for Arlo via the hospital-in-the-home program, Wallaby, once he was stable enough. This was the best outcome possible for a family who had to separate in compliance with COVID-19 restrictions for everyone’s safety. They were finally able to enjoy some ‘normality’, spending time at home together as a family.
As parents, Bronte and Romi have suffered the unimaginable—being the parents of a heart baby has taught them that anything can change at any moment. “Making plans can be challenging as we have to constantly consider how Arlo is” Bronte said. “We always feared about going away on holidays or certain places because we would always be concerned of the distance to the RCH.”
“When you spend so much time in hospital, you learn the names of everyone, and you recognise faces. It’s not just the nurses and the doctors, but it’s the ward admin team, the ladies in the kitchen who hand over a hot meal to ensure you keep going. It’s the cleaners that constantly kept the hygiene at an elite level who always greeted Arlo and I with a smile. It’s the other children and families you meet battling a similar situation to you. On the ward, we would often open the doors and socially distance ourselves to eat dinner with other parents and their kids. We were always included as much as possible.”
“The nurses were our daily interaction, our friends, our child’s caregiver, when I was tired, they did the night feeds and nappy changes, even when they were busy, they always helped.”
“We are eternally grateful for the countless times the RCH has saved our Arlo”, Bronte glowed.
The impacts of Arlo’s journey still leave the family with a great deal of medical trauma, notwithstanding the mental health challenges that come with an experience like this. Today, Arlo has and continues to face many medical problems, but the family have learnt to appreciate the small things.
He was on a feeding tube for two years but after some extensive persistence and positive approaches, Arlo has finally started to enjoy food and sustains himself nutritionally. Despite low energy levels, Arlo does his best to keep up and he loves to play and socialise.
Bronte and Romi remain deeply vigilant with Arlo, as with any sickness comes serious consequences. Arlo is expected to have his next and final surgery in the next 18-months, this is known as the Fontan procedure. Arlo will forever need lifelong cardiology care, but with all things going to plan, this procedure will enable Arlo to have a modified blood circulation allowing him to lead a long and healthy life.