Craniosynostosis

[Emelyn]

Hi everyone i have just gave birth to a beautiful girl 3days ago but the doctor confirmed that she got Craniosynostosis. Never heard this before but after reading it all about it i was now very worried with my little one. Anyone the same?

[Hopeful15]

Hi Emelyn, sorry to hear your news. I don't know much about the condition either but am very worried that it appears that the Dr has been able to diagnose so easily and quickly and has left you to look it up on the internet to find out more about it - as it sounds very rare and very complex. Have you sought a second opinion? Have they already performed x rays etc? I'd go back and ask for proper advice and support from the Drs, midwife or health visitor to help calm your worries about your beautiful new baby xxxx

[mzimniewicz]

Hi, my son was born with this same condition 6 years ago. it's worried when you find it out. He had operation when he was 15 month old in Birmingham Children Hospital and support we had there was incredible. Lots of checks , scans itp before. overal it was worth. now he is handsom 6 years old boy. Year 1 in school, reading very well, his handwriting is very nice-best in class. And he is bilingual (we are Polish). It's big thing to deal with and very stresfull.

Operation was huge. They had to took half of his skull, cut it to many pieces and put it back together re - shaping in this same time. Scar is big but hairs will cover it and every year it's less visible. It' s going to be a small problem in the future, if he goes after daddy (my husband is bold Your girl will not have this problem

If you decide about operation I will recomend Birmingham or Oxford hospital.

Hope the things will go well for you and your little one.

Good luck.

xxxx