Changing Faces, Changing Lives
Archie’s Story
Archie was born via C-section. The midwife commented on Archie’s large head size and Mum Georgia recalls that this was the first comment in regards to her sons head.
The family was over the moon with healthy baby Archie and loved seeing the instant connection between him and his older brother, who was 3 at the time.
Getting to know her new baby boy in hospital, Georgia noticed the shape of Archie’s head and in particular, a bony part down the middle of his head. Feeling some unease, she asked the midwives and paediatrician and was reassured his head was still shaping and moulding which is a natural part of the process.
Archie was discharged from the hospital and started settling into the family’s new routine and family life. At one of the home nurses’s visits, Georgia mentioned Archie’s head shape and size but was again reassured it was ok and if anything was wrong it would have been flagged when he was born.
The following week, Georgia attended an appointment where a midwife was present. She asked about his head, wondering if he had been breech due to the way his head was shaped. Archie wasn’t breech and she encouraged Georgia to get a referral from the Doctor to see the paediatrician, which we did.
At the Paediatrician appointment, Georgia was again reassured that Archie’s head was still moulding and shaping. However, they couldn’t say that with 100% certainty, so Archie was sent for an ultrasound and an X-ray of his head.
Georgia recalled “Archie was five weeks old when we headed to our follow-up appointment with the Paediatrician. I was expecting “everything is normal” as it usually is. The Paediatrician asked if I had bought anyone with me to the appointment and this is when I knew everything wasn’t going to be “normal”. I was immediately bought to tears. The Paediatrician kindly explained Archie’s diagnosis of Sagittal Synostosis and that the treatment for this was surgery on his skull”.
Sagittal Synostosis, or Scaphocephaly, is a craniofacial disorder. The sagittal suture runs along the top of the head, from the baby’s soft spot near the front of the head to the back of the head. When this suture closes too early, the baby’s head will grow long and narrow. It is the most common type of Craniosynostosis.
“The Paediatrician had already referred Archie to a craniofacial specialist. The week following was a bit of a whirlwind. I had never heard of anything like this before and it was all so overwhelming and confusing”.
An appointment with the craniofacial specialist was quickly organised and the family was given direction, support and helped them to make connections with people who had gone through similar things before, all of which eased some of the anxiety surrounding the unknown.
A date for surgery was arranged to remove the prematurely fused bone to allow for normal head/brain growth and eventually, Archie underwent a Strip Craniectomy.
“The hardest part was leaving him for the surgery and seeing him after, but he did so well and was giving us smiles the next morning. Archie is now 4months old. He is 6 weeks post surgery and is thriving. He wears his helmet for 23hrs a day and is not bothered by it, you would never know he had surgery and is the happiest little boy”.
Despite the challenges, Georgia says that Archie is her inspiration.
“He is so strong and resilient. He has shown us and given us so much strength in the hard times and we are so proud of him. At times we questioned why us and why him, but we know that this experience is shaping us and him in a positive way. We are thankful for all the people who have supported us and what his care team have done for us so far. Living rurally these things are seen less and initially it was all very scary.
Craniofacial Australia is a great organisation. My mum came across them and reached out to them for a care pack for my family. They also called personally to offer support. Having an organisation specific to what you are going through makes you feel less alone. I didn’t know anything about these conditions prior to having my son, so to see them supporting research as well as raising awareness in regards to all Craniofacial conditions is really encouraging and comforting”.
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