Xavier’s RCH journey

At 32-weeks pregnant, first-time parents Kathleen and Adam were faced with the terrifying news that there was something wrong with their baby’s heart. An ultrasound had revealed that their growing baby was suffering from a congenital heart defect, after an otherwise happy and healthy pregnancy.

While Kathleen and Adam prepared for the arrival of their new baby Xavier, they met with a foetal cardiologist three times a week for an ultrasound to ensure that his arrival would be safe.

Shortly after birth, Xavier was resuscitated and brought to The Royal Children’s Hospital (RCH) via the Paediatric Infant Perinatal Emergency Retrieval (PIPER) service, where he remained on life support.

Shortly after his arrival, various further health complications were discovered.

Not only was little Xavier battling a debilitating heart condition, he was also faced with low blood sugar, a blood clotting deficiency, an overactive thyroid, and various other neonatal conditions.

“We arrived at the RCH shortly after he was born on Easter Monday, right as the first COVID-19 restrictions had come in place, so it was a very anxious time for our family,” said Xavier’s dad, Adam.

Xavier spent his first five days on the RCH’s intensive care ward, Rosella, following complications after his birth, followed by two days on Butterfly, the RCH’s neonatal unit.

Following his stay in Rosella and Butterfly, Xavier arrived at the RCH’s dedicated cardiac area – Koala ward – where he would spend a majority of his time within the hospital.

“Koala ward is a very special place for our family,” said Adam.

“Being around other families of children with heart complications on the ward, it really makes you realise that when you’re a heart-kid parent, you become very in tune with what’s going on with your child’s health, because you’ve seen them battle so much already.”

After a whirlwind first month of his life, Xavier was finally able to head home with his mum and dad.

“Since we arrived home in May of this year, Xavier has grown into a very happy and healthy baby,” said Adam.

“He’s reaching all of his developmental milestones after some setbacks in his first few weeks of his life, and he’s even exceeding our expectations with some of them.

“You’d look at him now and never know what he had been through.”

After spending so much time in hospital, Xavier has become very comfortable with medical appointments, and enjoys spending time with doctors and nurses.

“He loves his doctors and nurses now,” Adam said.

“Any time he sees someone in dressed in PPE, he thinks someone is about to play with me, because of how kind the nurses were at the RCH.

“The RCH is the reason we got to take home a healthy baby, and for that we are so grateful.”

2 comments for “Xavier’s RCH journey”

  1. Darryl Jess

    As Xavier’s Maternal Grandparents, we too are very grateful to RCH for their dedication and care of Xavier and all of the other kids in their care. As Adam says, it is great to see his development; especially how he has found his voice and his attention to new stimuli.

    Well done to RCh, Kathleen & Adam!

  2. Frances Evans

    I have a child whose now 7, with 22q Deletion. At birth he also had heart surgery and we are so greatful to RCH for their incredible care that year which saw him survive the complex surgery then continue to improve! Sharing these stories is important !Keep up the good work all


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