Suspected Sagittal Craniosynostosis

[newmumaugust2023]

I have a 12 week old baby girl and we have recently had the news that following an X-Ray, some of the sutures have fused prematurely and we are being referred to Great Ormond Street Hospital. Suspected Sagittal Craniosynostosis as head is long and narrow with a bulge at the back. I am utterly devastated by this news. Has anyone had a similar experience and do you have any advice for me?

Yes - my DS was born the same condition and although it is very shocking and worrying please be assured that it can be corrected by surgery. My DS was operated on at 6 months (also at GOSH - they were/are fantastic). This was 22 years ago and after check ups for the first 5 or 6 years he was discharged and we have never needed to go back.

It had no effect on his life whatsoever... he has recently graduated from Uni.

He does have a scar (& if he goes bald like his Dad in later life - it will probably show) but he is confident talking about it.

There is a very helpful charity called Headlines, please do get in touch with them.

Sending you best wishes ... I honestly never think about this anymore but do look out on Mumsnet as it does occasionally get mentioned and I hope I can give other parents reassurance.

Thank you so much for your message.

I know we would be in good hands at GOSH (the best!) but it doesn't take away the initial shock and worry.

I keep asking myself if it was something during the pregnancy or birth that's caused this, but a lot of what I have read online says there is no known cause.

Did your son have to have helmet therapy after the surgery?

My little girl is only 12 weeks. Im wondering how early they would operate.

No, my DS didn't need the helmet treatment. The scars are quite shocking immediately after the operation but they soon fade.

I believe six months is the 'optimum' time for the op, that is what we were told. Treatment & advice may have advanced in the years since our DS had the op.

I hesitate to say this, but please DON'T Google the actual operation. I saw a programme a few years later about the op ... the surgeons are so skilled but I am glad I saw it afterwards...

And no, there is absolutely nothing from the pregnancy or birth that would have 'caused' this condition.

Yes, my daughter had this. She is now 2.5 and doing so well, no vision problems or speech delay. We did the helmet therapy and the less invasive surgery. The helmet therapy was HARD. If we had to go back and do it over I would seriously consider the other procedure. I know this is a scary time and you're probably googling everything. It's going to be ok. The drs know exactly what to do for these little ones. Sending you positivity!

Thank you so much for messaging.

That's so interesting, can I ask why the helmet therapy was so hard? Were you encouraged to do the less invasive surgery? How old was your little one when she had the procedure. So pleased to hear she's doing so well. Do you mind me asking which hospital?

We are in the US and she had the procedure at a children's hospital. We were advised to do the less invasive surgery, I can't remember what it's called now, but it's less incisions and less time under anesthesia, it does require the helmet therapy afterwards. She had the procedure at 5.5 months and she was in the helmet till 1 year old. She had multiple pressure wounds from the helmet (like bedsores) one of which caused scarring. It was very difficult to keep her cool and hydrated, she sweated buckets. And it's very hard to have a physical barrier between you and your baby 22 hours a day. I don't think our experience is universal though, it seems like a lot of people have no trouble with helmet therapy at all. My husband didn't struggle with it as much and I think he would make the same choice again.

Hi, just saw your thread googling about craniosynostosis. I hope your DD is doing well? Has she had her operation?

I just wanted to add my experience in case you or other readers are concerned about the future. I had sagittal craniosynostosis as a baby (now 35!) and it was surgically corrected at six weeks old. Other than making my parents (unnecessarily) sick with worry anytime I fell over and hit my head, it hasn't affected me at all. My head is a normal shape and my brain developed normally (I graduated top of my year as an undergrad and have a PhD in biology). I have a scar down the centre of my head but never really noticed or cared.

Back in the late 80s my parents were told I had a high chance of passing it on to my children. During my pregnancy, doctors were actually concerned about DD's head in scans but specialists I spoke to said it's highly unlikely to be passed on (less than 1% chance). Anyway, long story short, her head is normal.

TLDR: had sagittal craniosynostosis corrected as young baby, never bothered me again!

Edit to add: I didn't have a helmet. Not sure if they were common "back in my day".