Changing Faces, Changing Lives

Freddi’s Story

Diagnosed with Sagittal Craniosynostosis at just 1 year old, Freddi underwent a cranial vault remodelling at 18 months, supported by an incredible team of haematologists to prepare her for surgery, all without needing a blood transfusion.

Her mum Stephanie remembers the anticipation and nerves leading up to surgery, but says the recovery was smoother than expected. “We took it day by day and moment by moment,” she shares. Throughout it all, Freddi’s strength shone through, sitting up to play just days after major surgery.

Freddi’s journey has shown her family just how resilient babies can be. “It was difficult to process what she had to go through, but seeing the comfort she took in us and the strength she showed was incredible.”

Stephanie hopes people understand not only what children go through with craniofacial conditions, but also the emotional toll it takes on families “Your baby will draw strength from your love and support – take it one moment at a time and let them amaze you.”

Interview with Freddi’s Mum Stephanie…

Age at Diagnosis?

One year old.

What treatment have you or your child had for this Craniofacial difference?

My daughter was diagnosed with Craniosynostosis at age 1, she underwent an ultrasound and a CT to confirm although it was very clear by looking at her head shape. At age 18 months after a few set backs she had a cranial vault remodeling without the use of a blood transfusion. We worked with an amazing team of haematologists to optimise her body for surgery.

What do you remember most about the early days of treatment?

There was a lot of anticipation and nerves about the recovery but it went a lot smoother than I expected. It was definitely intense but we took it day by day and moment by moment. I was fortunate enough to be able to breast feed her through her recovery which was a huge source of comfort and she slept on my chest or tucked in next to me the entire time. Babies are resilient and strong, there were times she was stronger than I was wanting to sit up and play just days after major surgery

How has this Craniofacial difference impacted your life and family?

It has taught us how resilient babies are and it has also shown us that every family is unique and can be thrown big curve balls. At times it was really difficult to process what Freddi had to go through but to see her strength and the comfort she took in her family was amazing

Is there something you wish more people knew about this condition?

I wish people knew the toll that it took on the families to comprehend what their child has to go through, but at the same time I wouldn’t wish anyone to experience that

What is one piece of advice you would give to someone receiving a similar diagnosis for their child?

Your baby is so strong and will build Themselves off your love and support so be strong and take it moment by moment and day by day and let your child amaze you with their resilience.

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Sagittal Synostosis

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