Steph’s recent post on tummy-time mentions the increasing incidence of plagiocephaly – literally, a misshapen skull. One reason for the rise is certainly the increased numbers of babies sleeping on their back, which is recommended as being the safest way for babies to sleep, avoiding SIDS.
However, there are other causes of plagiocephaly, including craniosynostosis, which is caused by the premature fusion of sutures (joins) in the skull plates. This was our experience with our second born…
I wanted to share our experience on the off-chance it may be meaningful to another family. The incidence of craniosynostosis in Australia is about 1 in 2500 births. Our surgeon has told us that the majority of cases have no known cause (although some do have associated syndromes, our son did not), and that the fusion occurs during the second trimester of pregnancy. I should point out that I am a mum with no medical background.
We noticed the shape of our son’s head as being ‘different’ within hours of his birth. Initially, I was told it was swelling from moulding during labour; but basically, from the day he was born, he looked slightly asymmetrical. Not unattractive but just a bit skewed. Some days it was more pronounced than other days, and looking at photos, it always seemed more noticeable. He had one eye which looked more swollen/closed than the other, and as the months progressed, his face really started to contort to a C shape. I have been told that you will see it a lot more clearly in a mirror or in photos.
Over the first 6 months of his life, I asked questions of my midwife, saw a cranial osteopath, and spoke to other parents. It wasn’t until he was 6 months old and three people commented on his noggin within a week that I really pushed my GP for a paediatricians referral. I waited a couple of weeks for a paeds appointment and I went to see them when my son was 6 1/2 months old, had plain x-rays taken that day, and within two days he was diagnosed with cranio. Until then, I had only read about positional plagio, and hadn’t realised there was a difference. We went to see the Australian Cranio Facial Unit within 2 weeks, had CT scans and some other assessment, and had surgery in September. Everything moved pretty quickly after the diagnosis.
Positional plagiocephaly (caused by sleeping in one spot etc) is different to craniosynostosis, and its treatment is different. Craniosynostosis is treated surgically. My son had unilateral coronal cranio; he had cranial vault remodelling (CVR) in September 2006. As at March 2009, he is 38 months old, 28 months post surgery, healthy, strong and attractive, with a scar mostly hidden by his hair.
I’m not an expert, but if you have any concerns about the shape of your child’s head, I would recommend getting a referral to a paediatrician. My GP did not think there was a problem with my son, and no one else ever picked up on it either. My son was almost 7 months old when diagnosed, which is considered pretty late (very late?) – it is certainly better if it is picked up earlier. If you feel there’s a problem, don’t stop looking for answers until you are satisfied.
I would be happy for you to contact me – leave a message below! – if you’re facing a cranio diagnosis.
Of course, a post about baby wearing while in the hospital is sure to follow. As are posts about baby wearing in a new city; while travelling to and from interstate medical appointments; while doing laundry in short-term accommodation… you name it, a medical condition can make a difference to where you’re carrying your baby geographically, but you always wear your baby in exactly the same place: close to someone who loves him.
Have you faced a diagnosis of either plagiocephaly or craniosynostosis? Were you aware of the difference? Do you need to connect with someone who’s faced this diagnosis? Do you know someone else who does? Leave a comment. You’re not alone!