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Worried about my baby's head shape - craniosynostosis?

(9 Posts)
tmae Sun 02-Mar-14 12:40:43

My LO's head was always measuring large before he was born and it still is (marked in his red book it is a fair bit above the 99.6th percentile at 6 weeks old). At around 3 weeks I noticed that his occipital bump is very pronounced so asked the midwife if it is okay, she asked if it has always been like that, and I thought it had, but looking back on pictures from when he was a week old the back of his head was perfectly rounded although still very long. I'm now in a total panic, and feel immensely guilty. I'm worried it may be sagittal craniosynostosis, does anyone have any experience?

BarbarianMum Sun 02-Mar-14 15:47:47

Ds2 has metopic craniosynostosis (mild form) and there is at least one poster on here whose child has been treated for the sagittal form.

Skull shapes do change and not all children have a perfectly round head but if you are worried then ask your GP to take a look (CT scan is the definitive diagnosis but sometimes doctors can feel if a suture is open or not).

There is no need to panic (though I understand why you are). I don't know why you'd feel guilty though. Even if your lo has craniosynostosis there isn't actually anything you could have done to change it.

tmae Sun 02-Mar-14 16:14:35

No it's just I feel I should have realised earlier, although I also have an anxiety disorder and one of the things I always do is try to blame myself for things that are entirely out of my control so having someone point out to me that I'm doing it makes me feel somewhat more rational about it, so thank you. I think I would be less stressed if I hadn't realised over the weekend and so been able to see a doctor.

BarbarianMum Sun 02-Mar-14 20:12:12

Well, luckily if it is cranio synostosis there is no great urgency in seeing a doctor (it's not like every hour counts).

It is entirely out of your control and if your GP didn't pick it up at the 6 week check there is no reason you should have done so. Please try and relax. B/w 6 weeks and 6 months my time w ds2 was entirely spoilt by fear and uncertainty and it achieved nothing. I wish I could have that time back.

tmae Sun 02-Mar-14 20:56:19

Thank you. I'm not helping myself, thinking of how scared he would be having a ct scan etc. I just want to be able to help him (it's stupid I know, I don't even know if he has it) but am feeling very helpless. Thank you again.

tmae Mon 03-Mar-14 15:21:14

The GP has referred us to a paediatrician as he thinks he could possibly have some fusing of his skull, does anyone know what to expect next at all?

BarbarianMum Mon 03-Mar-14 18:13:32

The paediatrician will ask you a load of questions about your lo's general health and development, will likely examine them top to toe then arrange for him to have a CT scan to confirm (or disprove) any fusion. That probably won't happen on the day

If they offer an Xray rather than a CT scan then I'd recommend that you push for a CT scan because Xrays can give false positives (show sutures as being closed when they are not). Depending on the age of your lo, they may need an anesthetic for the xray/scan because they have to be very still. (Ds2 was 3 mo old and we managed to coincide with his nap time so this wasn't necessary)

If the scan shows that the suture is closed then you'll be referred to a neurosurgeon to decide what to do next. If this happens to you, please come back and post here as there are several mums who will be able to advise and support you.

Also, try searching for posts by strawberrypenguin whose son had surgery for sagittal craniosynostosis.

Headlines is a good website for craniosynostosis (though it deals mostly with the syndromes rather than single suture fusions so don't scare yourself silly).

I remember this stage as being a very frightening time (no-one wants to hear the word neurosurgeon in relation to their baby do they?) but actually the great thing about craniosynostosis is that it is completely treatable. There are even 4 national centres for the treatment of the condition (Liverpool, London, Birmingham and Oxford) and you can choose to be referred to any one of them if you want to (large childrens hospitals do routinely treat it also though).

Wishing you all the best.

FastWindow Mon 03-Mar-14 18:24:34

barbarian what a very kind, positive and helpful post!

I also suddenly thought my dds head was an odd shape, like she was growing bumps where horns would be on an animal (or Sully out of Monsters Inc) so I went to the gp and felt very silly, but that's what you do. You have things checked, all part of the job description.

I hope it all works out fine for you OP.

tmae Mon 03-Mar-14 21:54:29

Barbarian I cannot thank you enough. Your post is beyond helpful. I had read about CT scans being done, I've had some in the past due to intracranial hypertension and even though I was fourteen and then twenty-four when I had to have them done they were intimidating and the thought of my little baby having to go through one terrified me, but knowing they can nap through them or give them anaesthesia is such a relief.

I was talking to my Mum and my cousins children were born with some skull fusing but they are a similar age to me so I didn't understand well enough as the last time I saw them I was a young child so perhaps there is a genetic link? I have been wondering whether to contact my Aunt but I don't know whether she would be happy for me to contact her about it as we haven't seen a great deal of each other over the years, although she is absolutely lovely.

It does feel very scary, I keep trying to bear in mind that it is treatable but I think the waiting is going to get to me, apparently the letter from the paediatrician should be here within three weeks and then the appointment to see them could well be another month later so potentially nearly two months to get on the road to a proper diagnosis. I want to be able to see a paediatrician privately but it is so expensive and I have no idea who is any good.

Thank you again, you have been so reassuring and so kind to detail things so clearly x

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