17-month-old Emilia was born with a Unilateral Cleft Lip and Unicoronal Craniosynostosis.

A Unilateral Cleft Lip occurs when one side of the lip has a gap, after failing to join together during pregnancy.

Unicoronal Craniosynostosis occurs when one of the two coronal sutures (they run from the front fontanelle down to the side of the forehead) fuses before birth, causing one side of the forehead and eye socket flatter than the other.

Mum Melanie tells her story:

At Emilia’s 19-week ultrasound, we were told that Emilia had a 3.5mm cleft lip on her left side. At this stage, it was not known if her palate was affected or not. The imaging of the ultrasound was not clear, so we would not know if she had Cleft Palate until she was born.

There is a history in my family of cleft lip and palates, so this was not a condition which was unfamiliar to me. We met virtually with The Craniofacial team at Westmead Children’s Hospital approximately a month prior to Emilia’s birth. They answered all our questions and concerns which put our minds at ease and helped us prepare, especially regarding feeding particularly if her palate was affected.

When Emilia was born, she let out a wide mouthed cry and my husband saw that her palate was intact which was a huge relief. She was just perfect! She was born with some facial asymmetry and during her newborn screening our midwife flagged a hard spot on her head where her sutures were. 

Our Paediatrician referred us to Westmead Children’s Hospital, and we had an appointment with them when Emilia was just 2 weeks old. Covid restrictions were still in place so unfortunately my husband could not attend the appointment with me, instead video calling in from a café around the corner from the hospital.

Emilia was diagnosed with Unicoronal Craniosynostosis, where her left coronal suture fused prematurely. A CT scan confirmed this diagnosis 3 weeks later. My heart sank, I had never heard of this condition, and I was so overwhelmed and upset to discover that she would require major surgery on her skull to correct this. I was so scared listening to what the surgery would entail but knew she needed this surgery to ensure her brain had the room it required to grow.

I walked out of the hospital that day in tears.

The following months I spent researching Craniosynostosis as much as I could. I also joined online support groups for both Clefts and Craniosynostosis. Hearing other children’s journeys and connecting with other families in the Craniofacial community reassured us that it was all going to be ok and really prepared my husband and I for what to expect from both surgeries. This helped us feel much more positive.

After 3 cancellations, Emilia had her Cleft Lip surgery when she was 7 months old and, in many ways, this was a practice round for the much bigger surgery that was yet to come. Handing her over in theatre was the hardest thing I had ever done. We spent the night in hospital and went home with Emilia the following day. Emilia handled her recovery and the following 3 months of wearing nasal stents so well. It really is true; babies are so resilient!

In February this year, 3 weeks after her first birthday Emilia had her Fronto-Orbital Advancement (FOA) Surgery. The day we were so anxious about had arrived. 3.5 hours later we received a call from her surgeon and were relieved to hear that her surgery all went to plan and there were no complications. Connecting with other families and following their children’s journeys assisted us in the days that followed especially in relation to what to expect Emilia to look like post-surgery. She had lots of facial swelling, a drain coming out of her head for the excess fluid and had lots of cords connected to her. We spent the next 2 weeks in hospital due to prolonged post operative fevers which was difficult and emotionally draining.

We cannot thank Craniofacial Australia enough for the beautiful care package they kindly sent us pre-surgery. It really made our hospital stay much more comfortable.

Just like her cleft surgery, Emilia recovered from this surgery well in the weeks that followed once we got home, and we are now seeing the Craniofacial team annually for check-ups.

4.5 months on, and you would not even know Emilia had major skull surgery. Her hair has grown back and she is an energetic toddler who started daycare this month!

We are so incredibly proud of her and wanted to share Emilia’s journey in the hopes it helps other families deal with Cleft and Craniosynostosis diagnoses in the way that it reassured us when we were feeling incredibly overwhelmed and frightened. Knowing that we were not alone and that there was light at the end of the tunnel, made the world of difference! 

THANK YOU TO EMILIA AND FAMILY FOR SHINING A LIGHT THIS CLEFT AND CRANIOFACIAL AWARENESS MONTH. 

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