From looking at three year old Saffron’s cheeky grin,
you would never know she spent the first seven and a half weeks of her life on the Butterfly Ward, the Neonatal Intensive Care Unit at The Royal Children’s Hospital (RCH). But for first time parents Lucy and Ravi, it’s something they will never forget.
When first time parents Lucy and Ravi found out they were having a baby, they were over the moon. However, their joy soon turned to fear when, at Lucy’s 13 week scan, their doctor mentioned their unborn daughter’s jaw looked small – significantly smaller than how it should look.
“We first realised that something wasn’t quite right early on. The gentleman doing our 13 week scan told us that Saffron’s lower jaw looked really small. He suggested we do another scan at 16 weeks to see if it had caught up,” recalled Lucy.
When the next scan also showed a significantly smaller jaw, Lucy’s doctor ordered an amniocentesis, a procedure that tests for any abnormalities in an unborn baby.
“They didn’t know if Saffron had something called micrognathia, which is a recessed jaw, or if it was a sign of something more serious.
“Thankfully the amniocentesis revealed she just had micrognathia, which often goes hand in hand with other conditions, like cleft palate and Pierre Robin sequence,” Lucy explained.
“While you can’t determine Pierre Robin sequence until birth, you can work out the cleft beforehand with an MRI. We opted to do that, which revealed she had a soft and hard cleft palate. It was good knowing, we could kind of prepare ourselves,” she added.
When Saffron was born, she was transferred to the RCH by the Paediatric Infant Perinatal Emergency Retrieval team, also known as PIPER, a vital service that is supported by philanthropy at the RCH. This marked the beginning of a long journey on the Butterfly Ward, the hospital’s Neonatal Intensive Care Unit.
At five weeks old, Saffron had her first surgery – a jaw distraction – which Lucy described as “hectic”, especially amid strict COVID-19 lockdowns.
“It was so full on… being in lockdown, the surgery and the days after. Despite all of it, the staff still managed to smile and provide us with the support we needed. I honestly cannot fault the entire team.
“I was especially grateful for Arnie [one of the nurses on Butterfly]. I remember when he first walked into our room in his Paw Patrol scrubs, and we just clicked. He held my hand through so many of the big moments,” said Lucy.
While Saffron’s journey with the RCH is still ongoing, including a recent surgery to repair her cleft palate, Lucy is passionate about the life-changing difference that philanthropy makes to children like Saffron.
“It’s so special. None of the additional support or specialised equipment and facilities are possible without it.”