Kylie,
 
As soon as I read your email on the oz mid list I knew this was her deal, I am sorry I was right, no one want to be right about a missed diagnosis.
 
Actually the check for CDH is routine for all newborns & doesn't require a specialist to screen, all midwives are taught to do them in their training.
In fact  I did an extensive study on CDH as a major in my training (probably forgotten 50% of it now).
 
Probably the  realistic, workable solution is not paed checks for all babies but better training for midwives to ensure that they pick up the easily dislocatable hips & unstable ones (the potential DHD ) as well as those actually dislocated this would enable a referral to be made to an orthopaedic specialist early.
Somehow she has just slipped through the net even though her symptoms are absolutely classic.
 
There is heaps of available info on the net, support groups etc you could utilise.
Presumably you are being referred to an ortho & if so he would be the best source of information relevant to your child. Resist the temptation to apply other peoples treatment  experiences to your little one as they are all different people after all & it'll only freak you right out (worse than you are probably feeling already). Probably the ortho or paeds secretary/receptionist knows of the information groups in your area, just phone and ask her.
 
Rest assured you couldn't have known about this, you are doing all you can now & with the right professional help she will do well.
 
Brenda Manning
www.themidwife.com.au
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