Our journey with Craniosynostosis

Sons

Both of our sons have a rare skull deformity, ‘Craniosynostosis’.

Craniosynostosis causes a baby to be born with, or develop, an abnormally shaped head. It is the result of the premature fusion of different sections of the skull. This means the skull is unable to grow in affected areas. 3 out of 4 cases diagnosed are boys.

What are the symptoms? The most common sign of craniosynostosis is an oddly shaped head at birth or by the time the child is a few months old. The skull may become long and narrow. Or it may be very flat and broad in front or back or on the sides. This oddly shaped head may be the only sign of craniosynostosis. Ethan was diagnosed at birth and underwent a full skull reconstruction in Brisbane, to allow room for his brain to grow. He then underwent a second skull reconstruction 6 weeks later to correct the first at the ACFU. His older brother Liam, was diagnosed through Ethan’s journey and at 4 years old, underwent his first skull reconstruction also. The reconstruction involves an incision ear to ear, removing the skull, and remodelling it allowing space for the brain to grow.

The disease can cause Intercranial Pressure and also lead to developmental delays. There is a list of genetic conditions linked with Craniosynostosis as well like Pffeifer syndrome, Crouzon’s syndrome, Apert syndrome, Muenke syndrome, Saethre-Chotzen syndrome, and the Cranio-frontal-nasal dysplasia. The disease requires treatment by a Multidisciplay Team, such as Australia’s only dedicated Craniofacial Team at Australian Craniofacial Unit n Adelaide. Both Liam and Ethan will require regular follow ups to ensure their brain and skull grow sufficiently.

Both of the boys love life and will have every opportunity to succeed. Liam’s passion is soccer, playing for the Under 7’s at his local Football Club, and Ethan has a love for anything mechanical that moves. Planes, trains and fast cars. It has been a long haul over the last 3 1/2 years, a lot of medical appointments and a lot of research. Through our journey, we have started up our own Craniosynostosis Support group where other families affected by this rare disease can get the support they need through their own diagnosis, treatment and follow up.

If you are have a child affected by Craniosynostosis you are welcome to join our private – closed group at www.facebook.com/groups/craniosupport Always remember, whatever your own challenge in life is, you can get through it. With rare diseases especially its vital you try and find other people, no matter how rare, who can share their experiences and lift some of the anxiety and burden from you. Both the boys have their own personal pages, documenting their experience with this rare disease.

www.facebook.com/groups/ethanscraniojourney www.facebook.com/groups/liamscraniojourney