Anyone have experience with Sagittal craniosynostosis?

[Nat09876]

My health visitor noticed my babies head had gone from 25th to 91st centile at the 6 week check. She also said the shape looked elongated but thought the skull sutres were still open…scheduled another head measurement in 4 weeks. Now obviously I’ve been on doctor google and came across Sagittal craniosynostosis …I think due to growth spurt this also now looks more pronounced. I’ve had a feel myself and I’m sure the suture doesn’t feel open where it should but health visitor thought it was so I’m really hoping.

Does anyone have experience with this? I’ve attached a photo from the side also…

I had my 6 week health visitor appointment last week and she said my babys soft spot should be 2 fingers wide but it's 1? And his head circumference has dropped by a centile? Could this be an indication of this?

@Butterscotchbaby just wondering how you got on? My baby is the same as yours, small fontanelle and dropped a percentile for head circumference

I have name changed since this but this was me :) i basically kept getting passed from health visitor to doctor until May! It stayed 1 finger apart and at the last appointment at the beginning of may the doctor said that it was still open. The doctors did contact the hospital back in march and they said that a small fontanelle on its own wasnt a concern- that if it did close then there are other areas in the skull that would allow the brain to grow - they said that it would be quite apparent if he wasnt developing properly. The doctor at the may appointment said i can keep going to get it checked but that they were not concerned in the slightest about it. It was such a worrying time for us though. How old is your little one? Xx

@Nat09876, @GeorgiePorge and @Kd1403 please may I ask how your babies are doing now? We are seeing the paediatrician this week and I am sick with worry. Thank you.

@serie9 my little one is doing great thanks. his OP was Oct 22, so over 2 years ago now. He has a check up next year, but so far no worries at all, and apart from being a cheeky sod, he is developing just fine.

obviously there is lots of variables for different kids and parents, but for us the worst bit was finding out and the first few months of worry.

Are you in the UK? if so, the paediatrician should refer you to one of the supra centres, and they do a great job of answering your questions.

Feel free to PM me if you have more questions.
good luck and for now just try to enjoy all the baby cuddles.

@serie9 my son is now 2 years post op (endoscopic at 17 weeks), and he’s doing fantastic. He’s a happy, healthy and completely crazy little boy. You wouldn’t think he’d gone through what he has.

It was such a worry in the beginning, I know exactly how you feel - I was ill with it. I wish I knew back then what I know now, and how everything was going to work out. I remember people saying that to me at the time, and it’s so true.

Good luck with the appointment, if there’s anything you want to know, I’m happy to help however I can!

Thank you so much @Kd1403 and @GeorgiePorge for getting back to me. Unfortunately it seems my instincts were right and the paediatrician has referred us onwards for a CT scan. Apart from feeling sick with worry, unfortunately over the past couple of weeks I feel as if I can’t enjoy my little boy any more. I look at him and I’m constantly reviewing his head shape and so on.

I feel so worried about what his future may hold. I just feel sick all day long. I’ll let you know how the CT scan goes and may take you up on your kind offers to PM.

He is so loved and was so wanted and I’m just so worried about what is in store for him.