I want to put this out there for any other mamas who might be going through what I recently went through. In short, here is the info I searched all over the internet to find: A bony head or noticeable ridges does not necessarily indicate craniosynostosis!
The full story: On September 25th I gave birth to a big 9lb 3oz baby boy after a very short labor at home. Five days later I took him to his first pediatrician appointment. He was weighed, measured etc. and the doctor agreed with the midwife that he was perfectly healthy.
A few days later, at just over a week old, I started to think that maybe his head didn’t look quite right. The bones seemed really prominent, much more so than I remember from my older daughter. I could easily see and feel a ridge along the middle of the top of his head running from front to back, and even along the back of his head running side to side. Of course I know that there is a lot of variation in baby heads and it is common for heads to be misshapen, particularly in the first day or two after birth, but at two weeks old these features seemed even more obviously apparent. I wondered if they were normal and started googling.
If you search “bony head, newborn” or “newborn head ridge”, essentially the only thing that comes up is Craniosynostosis. It refers to a situation where the various bones in the infant head fuse prematurely. With the bones fused, the brain cannot grow properly. This leads to all kinds of problems including facial deformities, vision and hearing problems, as well as developmental delays. It’s rare, only 1 in 2000 babies are afflicted. How bad it is depends on which of the bones – which sutures – are fused, but in most cases the treatment is surgery.
My husband thought I was just being a paranoid mama spending way too much time staring at his head, but I had become very worried. I did find one forum of others talking about the ridges on their baby’s head that the doctors had declared normal. Multiple parents on that one forum shared stories and even photos, but everything else I read pointed to craniosynostosis.
The only thing (besides that forum) that gave me hope that he was fine was that applying gentle pressure to the edge of the bones made them move independently. The ridge also changed based on which side he was laying on. It didn’t seem like one ridge down the center but more that one bone would be higher than the other and sort of stick up along the suture, causing the appearance of a ridge. Those observations made me think the suture couldn’t be fused. Nevertheless, I couldn’t find anything on the Internet to convince me that ridges were ok and normal at 1 month old.
I was worried, and since by then we were back home in Pavones (a 6 hour drive from our doctor in the capital of San Jose, Costa Rica) I sent pictures to our pediatrician to ask his opinion.
The pediatrician responded that his head looked perfectly normal. But when I sent the same pictures to our midwife who happens to be married to a neurosurgeon, her husband thought it did look like he could have craniosynotosis of the sagital suture. He recommended we take our son to a pediatric neurosurgeon and gave us the contact information for a friend of his.
Based on what the pediatrician had said, I had relaxed into thinking my husband was right and I was over thinking it, but now a neurosurgeon thought I might be right about the craniosynotosis! I called the pediatric neurosurgeon immediately but we couldn’t get an appointment for 10 days. I spent that time spiraling deeper down the freaked-out Google wormhole reading the same information over and over on different sites, and basically becoming an expert on the condition, the diagnosis and treatment. I convinced myself that based on the presence of the ridges he was definitely going to need surgery.
I finally got my husband concerned enough to start doing his own research. We reached out to what seemed to be the best treatment center in the US, whose doctors had pioneered a less invasive surgery technique and claim to treat more cases than anyone else. They were very helpful and suggested we send in photos of specific views of the head for an initial opinion.
Before hearing back from them we also reached out to a specialist in Los Angeles who also asked for photos.
Amazingly to me, both responded that the photos looked normal. Big *sigh* of relief, but what about those ridges? I was not going to feel true relief until someone who knew what they were doing got their hands on his head and felt what I was feeling.
On the day of the appointment I was so excited to get some answers but was also very nervous about what the answers would be. Soleo and I left the house at 4am, to get on a small plane for the city. At the Hospital Catolica we got 2 xray views of his head as recommended by the doctor. I seriously wish I’d posed for a picture with the doctor, especially now that I’m writing this post. He was 60ish, with an earring, a red bow tie, gold cufflinks in his button-up shirt, and a super cute vintage leather doctor’s satchel. Very stylish, but more importantly he was very friendly and patient. He listened to my concerns, felt Soleo’s head, examined the xrays and told me his head looked perfectly normal. I was skeptical and bombarded him with questions – “What about those ridges? Are you sure? How can you be sure? So, what if he wasn’t born with it, do the ridges mean the sutures are trying to fuse now?”
The xrays showed gaps between the sutures to assure me that they are not currently fused. He explained the ridges by saying that since he was born with a very big head – 38cm at birth (39cm by 1 month old), that the sutures had been forced to overlap during birth and he simply needed to grow into his head. Over the next few months the brain will expand causing the bones to move and flatten out.
“Nothing to worry about, he’s a very pretty baby. I don’t think you need to schedule an appointment for another checkup, but if you need more reassurance, feel free to send me photos in a few months.”
Another bit of info that I never found during my google searching but that the doctor confirmed is that if they have it, they are almost always born with the condition. Only in incredibly rare situations, involving certain other conditions like swelling in the brain requiring a shunt, would the plates fuse after birth.
So, in our case, Soleo is fine and we are relieved. He’s just got a bony head and my husband has jokingly started calling him “ruffles” as in “ruffles have ridges”.
I wanted to follow up on the above story and say that Soleo is now 6 months old and his ridges are completely gone. He has grown into his head and several people who have met him have commented on his “great head” shape.