Elle's Story

Pregnancy is an emotional journey, particularly for mums of premmie babies.

As each week passes and you inch closer and closer to the 19-week scan, that feeling of excitement and anticipation can sometimes be overshadowed with doubt and worry.

For sports journalist Sam, the stress of her first pregnancy weighed heavily on her heart when she found out she was pregnant for the second time. At the same scan just three years earlier, first-time parents Ben and Sam walked hand in hand into their obstetrics appointment, only to walk out feeling apprehensive - their little girl was measuring too small and premature birth was a real risk.

At 32-weeks, baby Imogen was delivered by an emergency C-section after Sam suffered from severe pre-eclampsia and a placenta abruption. She weighed just 1.3 kilograms.

After a life-threatening delivery, seven weeks in the Neonatal Intensive Care Unit, five months on oxygen and two years of follow up specialist appointments, it was only natural that Sam was hesitant about having another baby. However, it was the dream of a second child and sibling for little Imogen that gave her and husband Ben enough courage to take their next leap of faith. But once again, their 19-week scan revealed another complication…

"We had known from 19-weeks that Elle has a cleft and it threw our world upside down. I was devastated and felt like I had failed her, bringing back feelings from Immi’s birth. I blamed myself, fought torturous guilt and searched for an answer why but like so many things it’s just one of the quirks of pregnancy." 


It was only in the months before Elle was born that Sam learned cleft lip and palates affect 1 in 700 newborns. The cleft occurs at eight to ten weeks in utero when the roof of the babies’ mouth doesn’t fuse together to close the natural gap.

Despite their initial fears and uncertainty, Elle was born safely albeit in the midst of COVID-19.

"The moment I saw Elle and held her was the most beautiful world-shifting moment. I didn’t see a cleft, just an incredible little girl. She’s perfect and I’m the happiest and proudest mum of my two little fighters," recalls Sam.

Four months later, Elle underwent her first of three procedures at Sydney Children’s Hospital, Randwick, not to ‘fix her’ but to make her life more comfortable. By publicly sharing their story and posting photos throughout Elle’s journey, Sam hopes she can help normalise cleft palates.

"Elle isn’t broken, she doesn’t need to be ‘fixed,’ she’s perfect just the way she is. Her journey is just going to be a bit different to others, but that’s ok, there’s nothing wrong with that. We are so grateful to the amazing staff at the hospital who provide us with so much information, advice and support. It’s thanks to that support, that I can confidently share our story, normalise difference and hopefully, help other cleft mums not feel so alone."

To help other kids live their healthiest lives, donate to our Light Up Xmas appeal today. Every dollar, will help provide world-class care to the smallest of patients like baby Elle.

Sydney Children's Hospitals Foundation raises funds for Sydney Children's Hospital, Randwick , The Children's Hospital at Westmead, Bear Cottage, the Newborn and Paediatric Emergency Transport Service (NETS NSW) and Kids Research