What Is Craniosynostosis?
Everyone knows about a baby’s “soft spot” aka the fontanelle. It’s important to familiarize yourself with this area, as it can tell you if your kid is dehydrated, too! This soft spot is a junction of several skull bones. These bones are hard plates connected by fibrous tissue called sutures. Typically, a baby’s flexible sutures allow their head to pass through the birth canal more easily. Over time, the sutures harden into bone, creating a whole skull.
In a child with craniosynostosis, the sutures close prematurely - in the womb or shortly after birth. This early hardening of the skull can limit brain growth, endangering development, vision, and hearing, among other things. Some fused sutures will feel like knobby ridges on the child’s head. Others create a seeming sunken appearance as the baby grows and the brain develops around the fused seam. To be clear: craniosynostosis is NOT the same condition as positional plagiocephaly. This more common and less serious condition is caused by a flattening of unfused skull plates and can usually be corrected with helmet therapy.
What Causes Craniosynostosis?
Craniosynostosis is a condition of the skull bones and sutures that can sometimes be diagnosed at birth. More often, parents receive a “cranio” diagnosis after a few months of concern. Specifically, craniosynostosis develops in utero primarily by chance. Some cases are related to other genetic conditions, but the typical case is totally unpredictable. In fact, doctors can’t reliably diagnose craniosynostosis in utero, which means parents have no way to prepare for the diagnosis.
Why Are C-Section Babies At Greater Risk?
Here’s the truth about statistics: usually, they’re concealing more than they reveal. Craniosynostosis is sporadic; this means it usually occurs by chance and has no genetic cause. Some genetic conditions do present with craniosynostosis, but those are in the minority. The fact of the matter is, cranio begins impacting babies during their growth in the womb. C-sections do NOT put a baby at risk for developing an issue with their cranial sutures! However, some forms of craniosynostosis can complicate a vaginal delivery. If a baby’s head is misshapen, it can make their passage through the pelvis and birth canal a bit tricky. This means that some babies with craniosynostosis are delivered by emergency c-section. In other words: a mother is at more risk for having an emergency c-section if their baby has cranio.
Usually, cranio babies receive a diagnosis within a few months. If a parent or pediatrician suspects a baby may have fused sutures, they can order a CT scan. Cranio must be confirmed visually. Depending on the severity of the condition, doctors typically recommend one of two treatment options: non-invasive or surgical techniques.
Non-invasive techniques look a lot like helmet training for positional plagiocephaly! They usually buy time if sutures aren’t closing rapidly. Ultimately, surgery is required to separate fused bones. After this separation, most kids see no further issues or ill effects. In fact, one organization performed a long-term study that showed kids with cranio showed only minor developmental delays during early childhood. By ages 6-8, these differences became imperceptible!
Cranio Care Bears is a non-profit organization founded by two moms. After their children were diagnosed with craniosynostosis, Summer Ehmann and Shelby Davidson recognized the need for community support. Babies with craniosynostosis require specialist care, so these parents began sharing their experiences with providers. Beyond that, the families offered emotional support to one another.
On a global level, those with craniofacial disorders can find an even larger community in Face Equality International. This alliance of nonprofits, NGOs, and individuals was founded by James Partridge, leader of UK charity Changing Faces. Partridge calls facial deformities of any kind a neglected global human rights issue.
“Wherever they live in the world, people with disfigurements...have to deal with many psychological, social and economic challenges in living confident, successful lives in the 21st century.” - James Partridge