Newborn abnormal head shape sagital craniosynostosis

[Ophentru]

My baby was born on Friday by c section due to being breech. We're So happy and she's doing well.

When doing her checks they noticed the back of her head was a bit elongated and called in paediatrician. She came over and said that while the front skull looked fine, the back was abnormal and she'll have to come back in 8 weeks for more checks. She then mentioned referrals to Alder Hey and imaging as next step. I'm besIde myself and can't stop crying.

Based on what they wrote down in notes and Googling it looks like potentially sagital craniosynostosis. Does anyone have experience of this?

I'm so terrified for my dd and worried I did something wrong when pregnant although she's passed all other checks with flying colours and seems otherwise very healthy.

My granddaughter had a long shaped head and was a natural breech birth. The midwives called it ‘breech head’ or something and didn’t seem surprised. It evened out and became rounder after a couple of months.

My cousins son had this when he was born. I don't know much about it other than she was fobbed off for ages by doctors but really pushed for a diagnosis.

A couple of surgeries later and he is absolutely perfect and thriving at primary school. I will try and find out some specific info And come back.

@clopper I'm hoping it could be something to do with birth and might even out before next appointment 🙏

Thanks @8lue8irds how awful she was fobbed off for so long. I guess I'm glad they picked something up so soon as I wouldn't have known anything about it.

We had similar with our DD at her new born check however she was born with virtually no fontanelle. She went to Alder Hey at 3 months and remains under the craniofacial team as she was diagnosed with trigoncephaly at that point (her suture between her fontanelle and nose was fused).

DD is now 6 and is thriving. The team at AH are amazing and you can put your complete faith in them.

You have my all my sympathy- I remember the first 18 months of her life vividly. I was constantly worried, taking pictures of her head and comparing them to see if it had got worse. Ultimately DD didn't require surgery and has "grown in to her head" so I worried for a long time for nothing. My advice would be to see what they say when you see them and and in the interim try to enjoy your baby without letting this overshadows your time (easier than done I know) as I regret the time I spent worrying versus enjoying her baby years. FYI your DC may have an MRI and 3d head modelling (same as having a picture taken) as part of the initial assessments but they truly are the experts at what they do and AH is outstanding overall. 💐

Thanks @itendswithus I do hope I can get past feeling worried sick as she is otherwise a healthy happy baby and I want to enjoy this time. She's our first and so wanted.

We only live 45 minutes from Alder Hey so if we do have to go there good to know she's in good hands and it sounds like there's options and treatment etc just so terrifying when they mentioned potential referrals to neurosurgery for a tiny baby

My DD is also under neurosurgery as well as craniofacial as they found something in her spinal cord when doing her first MRI (nothing too concerning however they like to keep an eye on her). She is under Chris Parks as he leads both teams I believe so he sees her (or one of his team now) as it means she seen all in one go rather than two as we also live 45 mins away from AH. DD has seen SALT there and is under the ophthalmologist there too as is stand in craniofacial patients and if you are referred under craniofacial then you can expect quite a few trips in the first few years. We go once every 2 years now and once a year for her eyes.

As I said DD is a thriving 6 year old. To look at you wouldn't think there is anything wrong with her and she has no issues with speech or sight and has reached all her mile stones either on time or before. I know every child is different but I'm telling you as what you read on line can often be worst case scenario and can be very painful and upsetting to read.

Your baby is brand new. Lots of people said to me not to worry, that head shapes change etc etc and I was having none of it. Googled the hell out of everything, watched videos etc but actually nothing I did would have changed the outcome regardless of how bad it was, so please do really try to enjoy this time - I know I wish I had looking back.

Thanks @itendswithus glad your dd is well monitored and doing well, think my mind has automatically jumped to worst case even though there's so many different outcomes. It's so hard not to freak out initially

Do you have a Facebook account? If so, ask to join the Noggin Doctor's Plagiocephaly and Torticollis Discussion Board. I know it sounds like it wouldn't be relevant, but the craniofacial surgeon who runs it is an expert in craniosynostosis. Like, he literally writes textbook chapters. Post in there and ask. You will need to send pictures, but sagittal craniosynostosis has some very distinctive features. Whilst definitive diagnosis would require radiographs, it is often really easy for an EXPERT to look at pictures and say it is either incredibly unlikely, or worth further investigation. I feel this could really set your mind at ease.

@Ophentru

Just wanted to update.

I did put this to back of my mind and dd has been doing great. Today we finally saw paediatrician and she does want to refer her to Alder Hey as there's a couple of things with her headshape that need a closer look.

I'm glad it's being looked into but cant stop crying again as I thought her head shape had vastly improved and we might get discharged but that was probably just wishful thinking.

Just an update if anyone ends up searching this topic.

We were seen by the team at Alder Hey and discharged within 5 minutes. Nothing wrong with baby's head at all and all measurements in normal range. She did have a misshapen skull after birth - doligocephaly - but it's gradually got better. Consultant said he had seen 5 similar cases already that morning that he'd also dismissed. I think they send any slightly abnormal head shapes to them for review but a lot of the time it's nothing to worry about.
I wasted so much energy worrying when there was no need.

OP that is wonderful news. So pleased for you and your DD!

Op I’m so pleased to hear this.

IME when it comes to babies, doctors are on the ball and do refer for pretty much any potential concerns, no matter how small the chance.

obviously that’s a good thing but it does cause a lot of angst for us parents doesn’t it. I’ve panicked about lots of things over the years. Enjoy your baby, she’s fine.

This is excellent news!!! I'm so pleased for you!!