· By Tiny Hearts Education
Our Craniosynososis story:
We were told at 28 weeks that our baby had what was assumed to be a "clover leaf skull" (Craniosynostosis), meaning all of the skull bones were fused together, leaving no room for brain growth and possibly other syndromes. After many weeks of seeing specialists and doing extra testing (amniocentesis and genetic testing), where nothing was found, we were told to expect the worst and think about the idea of aborting the baby.
Something told us our little boy was going to be okay, and the thought of ending the pregnancy past 30 weeks just didn't feel right with us. So we went ahead and held hope. I was induced at 40+1 and monitored closely. Our little man was born with a cloverleaf-shaped head but was 100% healthy in every other way.
He has had two skull surgeries since and is a thriving, happy, healthy 2-year-old. He has complex craniosynostosis and will continue to be monitored closely for inter-cranial pressure for the next 10+ years. My best advice to parents is to trust your gut. My husband and I both felt deep down that he was going to be okay, and we were right. Thinking back now, if we had gone down the road we were being told to go, we wouldn't have him here with us today, and he is perfect in every way.
We have since had two perfectly healthy babies and have not been found to carry any genetic causes for this. Craniosynostosis affects one in every 2,200 births, but prior to this happening to us, I had never even heard of it or even knew something like this was possible.
Advocate for your little one if you feel their head shape may be unusual or if something doesn't feel right.
Birth & newborn course
The Bump, Birth & Beyond course will educate you and your co-pilot (support person) on what to expect during pregnancy, birth and the first trimester with your new little love.