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  • "here's hoping!!!" started this thread

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Thursday, December 29th 2011, 8:20pm

I think my baby girl has Sagittal Craniosynostosis . Anyone else???

My beautiful baby girl Emilia Grace is now 13 days old. My DH had concerns over the shape of her head since birth but I put it down to birth trauma. Now though almost 2 weeks on I'm feeling more anxious. I can see a ridge right down the center of her skull & her fontanelle is small at the front. I can't see it rise & fall like normal & I can't find a fontanelle at the back of her head?

Sagittal craniosynostosis is when the plates in baby's skull fuse too early. This stops the normal growth of the skull. Instead it just grows at the front & back as the brain expands. However the plates need to be opened back up or it can restrict the brains growth altogether.

I did take her to see the GP yesterday but she completley dismissed my concerns. She said that if her head doesn't look any better at 4 months she will refer her to see a specialist. The MW & HV both came to do home visits & again said it looks like birth trauma. I have been doing more research today & I posted Emi's pic on a parents of Sagittal kids forum. They all replied back that she looks like she has the condition & I need to get her to see a neurologist & cranio facial specialist asap. It turns out that the condition is so rare that HV & GP's don't always know what they are looking for. They recognise "flat head" in babies but not narrow heads. Most children do not get diagnosed until they are a year old. The best time to operate is before 6 months.

So where do I go from here? I have tried today to book private consultations at Portland St & Harley St but their booking sytems are not open till the 3rd Jan. Birminghm childrens hospital won't see us with out a refferal. I feel like screaming.

Does anyone have any experience of Sagittal or trying to get the NHS to take notice? They just make me feel neurotic & I'm starting to doubt my own judgment. Surely a mothers instinct has to count for something.

I will try & post some pics of my beautiful girl, any advice or opinions appreciated. to those on Facebook please don't mention anything xxxx
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Thursday, December 29th 2011, 8:35pm

Hoping im so sorry to hear about your stress. Dont have any knowledge of this myself but if I were you I would wait until Jan 3rd and book a private appointment, its not very long to wait xxx
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Thursday, December 29th 2011, 8:50pm

Hoping, I used to work on paediatric ICU and we used to look after the post op cranio kids. 99% of them were around 18 months when their ops were done and they all did extremely well. The surgeons where I worked took the view that at that age,the natural fusion was just about complete and so any surgery would be permanent rather than them operating early with the risk of the skull fusing incorrectly later on.
I agree that she needs to be referred as soon as poss, but waiting til Monday won't make any difference at all hun, in fact she'll be at the very young end of being seen.
You could always take her to a&e as a way of getting seen by a neuro doc, but to be honest, nothing will get done short term unless she has any neurological problems like fits.
Let us know how you get on
blowkiss








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  • "here's hoping!!!" started this thread

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Thursday, December 29th 2011, 11:22pm

Thankyou for your replies. I have tried to post some pic's but I'm being told the files are too big? I don't know how to change them.

I have found a hospital where the surgeon from Birmingham Childrens Hospital does private consultations. They are open tomorrow, hopefully they can fit Emilia in very soon. Roll on 8.30am tomorrow when they open.

After lots of tears & panic I'm feeling a little calmer. I just wonder why this has happened.... DH always said trying for a 4th baby was pushing our luck after 3 healthy babies. This was always his fear.

Emilia is beautiful, I love her so much. She is laying here all curled up fast asleep on my chest. She is so alert & nosey when awake so I don't have any concerns with her development so far. She is sleeping & breastfeeding extremley well ,she gained 9oz in a week!

I will keep you posted , Thanks again xxx
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Thursday, December 29th 2011, 11:39pm

Cant help hon but good luck at your apt. Xxxxxxx

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Friday, December 30th 2011, 12:08pm

HH 13 days is WAY to early for craniosynostosis to be a worry. In synostosis the sutures fuse early but almost never BEFORE birth. It develops over months not days. Of course if you post the pictures on a synostosis forum the parents will think she has it because that is what they have experienced and they don't see the Millions of babies that have a slightly unusual head shape that is NORMAL. Birth trauma is by far the most likely explanation. Even if she did have synostosis (which I think is unlikely) she will come to NO HARM if you wait for an appointment. It is not an emergency. Time is required to monitor head growth and you will likely see it all move with time.

Please try and relax and enjoy your baby. I don't think you need to panic.
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Friday, December 30th 2011, 12:54pm

Thanks McFlozzer.

There seems to be so much conflicting information out there. I was in panic mode as so many people have told me she needs to been seen ASAP. I have managed to book a private appointment with Cranio specialist at The Priory Hospital Birmingham for Tues 3rd. Just having an appointment has made us feel better. I'd rather waste £300 & find out she is fine than wait 4 months & then find out I could have done something sooner.

It's really hard as I look at her one minute & she looks fine & then another I feel sick with worry. Family members had noticed it too but didn't want to say anything for fear of upsetting us. I will try & post some pictures. I have photo's on facebook but none of the back of her head.
xxxx
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Friday, December 30th 2011, 2:29pm

Yep, I agree with McFlozzer. Birth trauma can produce quite misshapen little heads, but it is temporary and is _completely_ normal. The baby's head is designed to be squished, it's exactly what is meant to happen.
And also, checking the sutures/fontanelles and measuring the head circumference is a routine part of the checkup your little one will have with the GP at 6 weeks and 6 months (or about then). So I wouldn't say it is usually missed, but all the same you should flag it up at any and all opportunities because it is worrying you.
Try not to worry... common things are common, and saggital craniosynotosis is not common and birth trauma is extremely common. If it does turn out that your little one has this, she will be in the best of hands, you will see to that.
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Saturday, December 31st 2011, 10:40am

I know nothing whatsoever about this condition but am glad you got yourself an appointment, if only to ease your worries. i am sure it will all be fine. If you want to post pictures you need to reduce the file size in a photo editing software first.xxx





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Sunday, November 10th 2013, 8:01am

Hi here's hoping

I know this is an old thread but I am interested to know what happened with your daughter's diagnosis. My little boy is 8 weeks and has just had sagittal craniosynostosis diagnosed from a CT scan.

Cheers Bee x
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