Our darling little Juniper (youngest of 3 girls) was born with Sagittal craniosynostosis early last year.As soon as she was born, I immediately thought “her head looks unusual” (but still beautiful!).
We were told that as she was born via c-section, maybe her head needed some time to “round out”.
We were anxious, unsure if it was “normal” or not. The day after she was born, a paediatrician came into our room with a team of medical students to have a look at the baby born with an unusual shape head. We were really scared, and we heard “it doesn’t look like a syndrome” – but suspected “craniosynostosis” – we had no idea what any of this meant. It was a really difficult time being newly post-partum, and never having heard of this condition.
In the following weeks we came back to see another paediatrician who stated that it was likely as little Juniper’s head hadn’t changed shaped, she had craniosynostosis. We were then referred to Westmead children hospital whose team confirmed her diagnosis via a CT scan.
8 weeks later Juniper underwent endoscopic surgery to remove a piece of her skull to give room for her brain to grow. Juniper needed a blood transfusion during the surgery, although she recovered so well, we were surprised at how well she recovered.
She wore a helmet to help mould her skull growth until she was 1 year of age, and had regular checks, and photos taken of her head shape! She has had eye testing, and will have more eye testing and a new CT next month to check her progress.
She is a happy, smiling, beautiful natured girl, and is now beginning to walk! She is doing so well and we are so proud of her.
Every craniofacial journey is unique – filled with challenges, triumphs and everything in between. Every face has a story to tell. By volunteering to tell yours, you’ll not only honour your own experience, but also give hope and encouragement to others walking a similar path. Whether you’re a parent, sibling or supporter, we’d like to hear from you. As a story volunteer, we will make sure that your story is told in a way that suits you.
