When our little lion king was born we noticed his forehead was very flat on one side and were told it was due to his positioning in the womb.
We kept pushing for answers and at 3 weeks of age he had an ultrasound, xrays and was referred to a cranio department where he had his first CT scan. Ari was diagnosed with right coronal craniosynostosis. Surgery was scheduled for around 9 months of age. Over the next few months his little head shape was changing far too quickly and my husband and I decided to get a second opinion. We travelled to Adelaide to see Professor David David. He examined Ari, reviewed his scans and informed us that Ari actually had right coronal, metopic, bilateral squamosal and partial Sagittal fusions. We were shattered and it was like receiving the diagnosis all over again but we trusted this team explicitly and they operated a few weeks later when Ari was 5 months of age.
Ari had a CVR and FOA. We were told following the operation that they had not seen a similar pattern of fusions in over 40 years of operating. Ari was a superstar as all of the cranio warrior’s are. He even learnt to sit the day we were discharged, his new round head probably helped.
Ari is now 3 years post, he is a busy busy boy, loves being outdoors, has such a kind heart and is progressing beautifully. He takes every appointment in his stride and has surprised all his specialists with how well he is doing. He knows Professor gave him his ‘special mark’ on his head🤴 His head has fused again since surgery and he is being closely monitored by his Cranio team, Opthamologist and Paed. All genetic testing for Ari has come back negative and he is just described as being ‘as rare as hens teeth’.
It has been a huge journey but we are so lucky to have our little Ari. For new parents out there please get more than one opinion if possible. It is the best thing we did. Trust your instincts!