By Shannon Ford
My son is Luke – he is a warrior. So is one in 2500 children born withcraniosynostosis.
The bones in a baby’s skull are separated by sutures – when the sutures fuse too early, it causes craniosynostosis. This causes an abnormal shape to the head because the skull cannot expand perpendicular to the fused suture. It is crucial to diagnose this as early as possible because if left untreated, it can cause pressure on the brain leading to vision and hearing impairment, as well as seizures and developmental delays.
There are various types of craniosynostosis. Luke was diagnosed with sagittal craniosynostosis. In Luke’s case, if you looked down on his head, it was very oblong because it had stopped expanding from side to side. He also had a very prominent soft spot.
When he was first diagnosed, I wasn’t so matter of fact. Luke was sent for ultrasounds, xrays, and finally a CT scan. It was the Friday before Memorial Weekend and the phone rang – it was the pediatrician and I felt like he had just kicked me in the gut. As I struggled with that wave of nausea from the cranio diagnosis, I felt my world was spinning out of control when he said Luke would be referred to a neurosurgeon.
The days ahead were filled with worry, medical research, and many tears. But mostly they were filled with me holding Luke longer, kissing that sweet misshapen head a hundred times an hour, and lingering on every moment that I spent with him.
Luke had a less invasive surgery due to his specific diagnosis and most importantly, being diagnosed at an early age. We have annual checkups until puberty. If you met him today, you would never guess that he had cranial surgery unless you peak through that crazy hair and see his scar.
Click here to see a video of Luke’s cranio journey!
September is Craniosynostosis Awareness Month. If your baby has an unusually shaped head or skull, seek answers from your pediatrician. Certainly act sooner rather than later. And finally, every individual needs to be educated about this disease – all parents need encouragement and understanding. As moms, we ask you to see past the misshapen heads, helmets, shaved hair, and scars, and see the true beauty of our miracle.