My daughter is 4 months old she has saggital Craniosynostosis. For those they don’t know her saggital suture has prematurely closed allowing her brain to basically only grow forwards and backwards. Apart from a funny shape head it can affect development delays death if the pressure on the brain is too extreme, eye problems ect. She has to have major surgery when she is 10 months old the procedure is very long and hospital stay they generally stay 7 days. I’m finding it really hard to cope especially money wise we don’t even have a functional pram! I myself need to have a third knee reconstruction booked in for October so I’m very overwhelmed struggling to carry bubs in a carrier as she gets even heavier. Has anyone dealt with craniosyntosis or know of people what support is there and how did you cope with it also how did your baby cope after surgery? Thanks in advance.
Posted anonymously, 24th April 2014