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Anyone had a second child with craniosynostosis?

(12 Posts)
CackleALot Tue 22-Jan-13 21:11:05

My D's is 2.5yrs and I'm 35wks preg with dc2. D's was diagnosed with sagittal craniosynostosis when he was 6wks old. He had total vault surgery (removal of and reconstruction of his skull) at 10 months old. Now I'm worrying about chances of this baby having same, really do not want to go through all of that again.

Wondering if anyone else has more than 1 child with this condition.

strawberrypenguin Thu 24-Jan-13 19:25:53

I don't have 2 yet but I'm interested to hear any responses you get. My DS also had sagittal craniosynostosis and was operated on in Oxford at the end of last year. It's a question that plays at the back of my mind too if we decide to have a second.
I know how hard the worry of a child with craniosynostosis is so offering a hand to hold too. Hope your second has a lovely un-fused head grin wishing you all the best

CackleALot Thu 24-Jan-13 21:16:59

Thanks Strawberry, didn't think it would bother me but now date is near I'm thinking about it more and more, do you mind me asking if your DS was breech? I'm putting DS' reason down to that. How was his recovery after surgery? My DS went to Alder hey, its absolutely amazing what they can do but def don't want to do it all again!

strawberrypenguin Thu 24-Jan-13 21:29:08

He wasn't breech but he was head down for a good chunk of time and for at least the last 8-10 weeks. Every midwife appointment I had he was in pretty much the same position so I do wonder if pressure has something to do with it a bit like being breech I guess.
He recovered really well thanks smile only in hospital 5 days and no problems with his scar healing. He's back at nursery now and completely back to normal. Luckily he has a fair bit of hair so most people don't notice his scar although I never mind telling people about it if they ask. His 3 month check up is at the start of march so we'll find out how happy the team are with him then although his head looks so much better to us.
How's your DS doing?

strawberrypenguin Fri 25-Jan-13 06:57:14

Is there anyway they will give you another scan? I say this because we were incredibly lucky and DS's craniosynostosis was picked up on my 35 wk growth scan, which I have since learnt seems to quite rare as most people don't have late scans. Just a thought - might be worth checking out smile

CackleALot Fri 25-Jan-13 23:05:20

AW, glad hes made good recovery, kids are amazing! couldn't believe D's was only on calpol 2 days post op! he's doing great. if it wasn't for the scar you'd never know as and his hair covers that!

I definitely think pressure has something to do with it too. I have a 36wk scan on Monday because of breech position last time so going to ask them to look alittle more closely at head if they can.

Good luck with 3 month check smile

BarbarianMum Mon 28-Jan-13 13:41:08

It does happen - there is a mum on here who has 3 boys all with metopic craniosynostosis - but I think generally it is just 'one of those things'.

With us it was ds2 that had it, ds1 was unaffected but looking at dh's skull I think it runs in the family and I wouldn't be surprised if any future children were affected (its a mild version that doesn't require surgery but boy, are their skulls ridged/bumpy).

strawberrypenguin Mon 28-Jan-13 19:51:12

Thanks cackle glad to hear your ds is doing well. How did the scan go today?

Great that your DS didn't need surgery barbarian you must have been so relieved. Interesting to hear that you think it runs in your DH's family there's so little known about how and why it happens. In fact DH and I both gave a blood sample and gave permission for them to take a sample from DS in surgery so that they can be used in research into the condition.

CackleALot Mon 28-Jan-13 22:23:46

Glad no surgery needed barbarian, it is a topic that no one really knows about. I'm sure the docs just Google it quickly before appt!

Scan went well thanks Strawberry - baby head down and average size. head circumference in normal limits so here's hoping no cranio!

nurse said today that D's prob was breech last time cause the shape of his head wouldn't have fitted nicely in pelvis. I hadn't really thought of that. I had thought he had cranio because of breech presentation - no one knows really!

I'm going to try VBAC this time but will get booked in for section at 41 wks if nothing happening.

strawberrypenguin Thu 31-Jan-13 19:32:44

That's great grin all sounds hopeful to me. Good luck I'll have fingers crossed for you

CackleALot Thu 31-Jan-13 20:43:11

Thanks Strawberry...

strawberrypenguin Thu 25-Apr-13 11:40:16

Hi cackle just dropping by to say hope dc2 arrived safely and Craniosynostosis free flowers

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