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baby with VERY funny shaped head

70 replies

Jasper · 19/09/2002 20:07

I am posting this due to concern over a friend's 4m old baby girl.
It's her first baby, normal(ish) labour ,with absolutely NO meds, ending in forceps and loads of stitches.
She has been fully breastfed from birth and is a very big girl and in every way normal ( smiles, interacts etc) but for two things.
Her fontanelle is so small as to be barely palpable.
Her head is REALLY mishapen. Now I have seen lots of babies with asymetrical heads due presumeably to lying on the same side all the time but this is something else.
The whole back of her head on the right hand side is really caved in looking.
It is hard to convey this in print but suffice to say if you saw this baby in the supermarket you would have to suppress the desire to do a double take, she really is quite deformed in the head region.The rest of her head rises up in a sort of peak.
It is almost as if there is a big chunk missing out her head and what is left has been squashed upwards.
In every other respect she is a really lovely little baby girl.
Her GP told her not to worry and initially she did not but it is not getting any better and she is thinking of asking for a referral to a paediatrician.
Any thoughts?

OP posts:
Are your children’s vaccines up to date?
Bumblelion · 25/09/2002 09:45

Sasha had the scan on Monday and nothing obviously abnormal showed up but we have got to go back next Wednesday afternoon to get the results. The Consultant was in the CT scan room as well as the radiographer but they took so many films of the different layers of her brain and various views of her skull, that it will take them a while to have a look at all of them.

Sasha was so good. She was given the sedative and was asleep within 5 minutes. As soon as I picked her up off the scan table she came round straight away, although still quite drowsy. They said we would have to stay in for up to 2 hours after sedation to make sure she had recovered okay but, since she came round so quickly and also since she is not walking or crawling, they were not worried about her feeling "drunk" and falling over as she would only be being carried around anyway.

My mum very kindly picked up the other two from school and Ashly (my eldest) was quite concerned that I was not there to pick her up, although she knew Sasha was having her scan. Luckily we were home by 4:20 which was good. Sasha was still very tired so went straight to bed and slept until 7 pm. I then bathed her and gave her something to eat and she was back in bed by 8:15 - still feeling very drowsy from the sedative. Yesteday she was fine.

It was weird John (ex) being there. When she had been sedated and we were waiting to take her for the scan, we were just sitting by her cot but had nothing to say to each other. Although he is the father of my children, I have now got over him - I no longer love him or want to be with him (I think he has driven the love and need to be with him out of me with the way he has treated me over the past 6 months or so).

When it was time to leave, I asked if he was going to pop in and see the other two just to say hello as he has to drive past my house on his way back to his place. He said no, but to tell the other two that he loves them and will see them on Wednesday.

I felt a bit p*ssed off - not for me but for the other two children. How could I have explained to them that he had driven all the way to the hospital from where he lives/works and had not even had the decency to pop in and say hello.

I think he got the impression that I thought he was being out of order because when I got home my mum was on the phone and said that John was going to be popping in just to say hello to the kids.s

He only stayed 5 minutes but at least the children saw him.

(I seemed to have veered off this tread - back to it now).

I will post more when we have got her actual results and see what the next stage is (if any).

They have referred her to Great Ormond Street Hospital pending the results of the scan.

SueDonim · 25/09/2002 14:54

I'm glad that the scan itself went well, Bumblelion, and that there's nothing obvious wrong. Here's hoping the in-depth results show the same result. Thank goodnesst your H did the decent thing in the end, even if he had to be kicked up the b*m to do it.

Rhubarb · 25/09/2002 21:27

Glad all went Bumblelion, I hope the results show nothing abnormal too. Really glad to hear that you are over your ex, at least he is showing his face for the kids every now and then. Hopefully once you get the results you can start getting on with the rest of your life! Good luck!

THERESA · 30/09/2002 17:10

I'm really interested to read this. My son is 10 months and has mytopic synostosis. As Bumblelion said, synostosis is when one of the 'sutures' (the four gaps that lead from the fontanelle) closes early. Apparantly it happened to Christopher before he was born. 'Mytopic' means that it is the front suture, so he has a pointed forehead and indentations at the sides of his head (temple area), also his eyes are a bit too close together. From the birth we noticed he had a funny shaped head, but it was my community midwife who saw him when we came home who prompted action. We live in the North East and the first consultant we saw arranged for head x-rays and scans when he was about 6 weeks and warned us that he thought it was quite unusual and we may end up at Great Ormond Street. However he referred us to another local consultant who saw him at about 3 months. He did not find it unusual, and was glad that we agreed that he had a funny shaped head as sometimes pursuading parants that this is the case is the hard bit! He took lots of photos and said he didn't want to do anything until he was about one (2 months time). There was no advantage in operating before this, and he liked to avoid operations on babies under one if possible. Christopher has failed his hearing tests, but I don't think there's a problem, he seems to be able to hear ok and we're waiting for the next one. He has quite a lot of hair now and people don't notice the shape of his head until I point it out. So now we're expecting to hear from the hospital shortly.
Bumblelion, I can't imagine how difficult all of this must be for you, coping on your own with two older ones (I've a four year old, but also a brilliant husband). I'll be really interested to hear how things go.

Bumblelion · 02/10/2002 09:40

Theresa, thanks for your post. They have not said what type of synostosis, if any, my dd has but, after looking at an american web site, I think it is called unilateral synostosis as she has a slight bump/swelling only on the right hand side of her forehead.

I have to go to the hospital today to get the results of her brain scan and also have another development check (after she failed her 8 month development check) and will post either late today or tomorrow to let you know the outcome.

Bumblelion · 03/10/2002 10:06

After Sasha's hospital appointment yesterday and her brain scan last Monday, they have confirmed she has got unilateral coronal synostosis.

The definition of this is "Premature fusion of one of the coronal sutures resulting in an asymmetric forehead and brow. On the affected side the forehead is flattened and recessed with the brow and supraorbital rim both elevated and recessed. The contralateral forehead may exhibit compensatory bulging or bossing".

That actually sounds a lot worse than it really is - her forehead is only slightly protruding - it really is not that noticeable and seems to be getting better, not worse.

Her brain scan showed that her brain is not affected but they are still referring her to Great Ormond Street Hospital as a precaution. I am not sure if they will decide to operate or not - will just have to wait and see.

SueDonim · 03/10/2002 15:29

Bumbeleion, I'm sorry hear about your dd's condition, but thank goodness it has been noticed and can be dealt with now. And of course, it's excellent news that her brain is unaffected.

Although I haven't totally experienced what you are going through, my dd1 was also suspected of having cranial problems when she was a baby, as her fontanelle began closing very early. It was a worrying time, but she wasn't even investigated (I think 'they' are more attuned to monitor situations now than they were 15 yrs ago)and went on to develop normally. But I can empathise with that horrible stomach-churning thought that there is something amiss with your precious baby.

Best wishes.

robinw · 03/10/2002 19:37

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maryz · 04/10/2002 19:29

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Bumblelion · 29/01/2003 17:18

At last I have heard from Great Ormond Street Hospital - have just got off the phone to them - and they want to see me and Sasha tomorrow to see the consultant.

There will then be two outcomes:-

(1) They will say she is fine, goodbye and have a nice life, or

(2) She has got a problem that they are going to deal with.

The lady I spoke to on the phone said the Consultant, Richard Hayward, is very lovely and he will explain to me in simple terms about the options (rather than "blinding me with science".

Will update you once I know the outcome.

bundle · 29/01/2003 17:52

the best of luck to you & Sasha, Bumblelion, all the GOSH people I've ever met have been lovely

cas1968 · 29/01/2003 17:59

Best of luck, will be thinking of you.

Marina · 29/01/2003 19:06

Good luck tomorrow, Bumblelion - I don't think you could be in better hands.

lou33 · 29/01/2003 19:28

Will be thinking of you, please let us know how you get on.

Batters · 29/01/2003 20:01

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robinw · 29/01/2003 21:13

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tigermoth · 29/01/2003 22:25

good luck bumblelion - hope the news is good.

jasper · 29/01/2003 23:30

|Good luck Bumblelion.
I started this thread about my friend's baby. She has been seen by a consultant at the local hospital and has been deemed fine.
HOPING YOU GET GOOD NEWS TOO.

OP posts:
jemw · 29/01/2003 23:31

good luck for tomorrow bumblelion, will be thinking of you and sasha

SueW · 29/01/2003 23:40

Good luck - hope it goes well.

sobernow · 30/01/2003 00:24

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Message withdrawn at poster's request.

mears · 30/01/2003 00:27

Best wishes from me too

GRMUM · 30/01/2003 09:32

Hope everything goes well today.Thinking of you.

Lindy · 30/01/2003 17:42

Bumblelion - so pleased you finally got your appointment; my DS was also seen by Richard Heyward (who then performed his op) & he really is a great guy, very approachable, easy to talk to without being at all pompous.

Please let us know how Sasha gets on.

Good luck.

Lindy · 30/01/2003 22:50

Bumblelion - any news? please get in touch, thinking of you.