My dear niece's soon to be 3 year old daughter was recently diagnosed with Dandy-Walker syndrome and Craniosynostosis. There is an appointment with a neurosurgeon this week.......what might we expect?
ETA: I am going with her to the appointment, my ex sister in law is a real piece of work, and hasn't been supportive towards her daughter with other issues that have come up. I am so proud of my niece for how she is carrying herself and going though all of this. She has been dealing with hearing loss with this same child since birth. Forever she has been telling the therapists and speech coaches (or whatever you call them) & Dr.s that she felt in her gut there was another problem. Maybe because she is young (23) they have looked down their noses at her and said things like "IF she wears her hearing aides at home and IF you are working with her like we show you, there is no reason why she shouldn't be talking by now". Finally someone sent the results of a hearing test to a well known audiologist who referred her for testing last week that revealed these issues. It seems to me, that this should have been diagnosed sooner......Craniosynostosis is the premature fusing of the stitches in a baby's skull, resulting in there not being enough room for the brain to properly develop. Dandy-Walker syndrome is a congenital brain malformation involving the Cerebellum and the fluid filled spaces around it, a key feature being the partial or complete absence of the part of the brain located between the two cerebellar hemispheres. I feel so overwhelmed, I can only imagine how my niece feels.
I've known several babies who had the surgery for Cranio but it was done as 3 month olds to allow their skulls to expand as the brain grows. I am not sure what they do for an older child. Depending where they live, maybe there is a great cranial sacral therapist that can help move the bones around. I know one boy with DW and he is 4.5 and does not need surgery for it at this time. Sorry I couldn't be of more help.
God Bless you for helping your niece. She really needs you and the fact that you are stepping up for her is wonderful. Your niece sounds like an impressive 23 year old too. She is handling a lot and doing it well. Standing up to doctors is hard for anyone - at 23 I don't think I could have done it. I think you two are a great Team. This child is lucky to have you both in her life.
Please have them show you proof of dandy walker syn. This would have or should have showed up on ultrasounds during pregnancy. They need to look very close at all of this. My son, before birth, possibly had dandy walker syn. - this was "seen" on the ultrasound. Turns out we were lucky and all healed fine and he was born fine. Dont let the doc's talk around you or over you. Question them and have them look at every possible situation. Prayers are with you!
as with any event, research as much as possible & go prepared with a list of questions & concerns. By thoroughly immersing yourself in knowledge, you can be better prepared.
I also feel strongly about having more than one adult present - multiple ears hear more, jotting down all comments/info, & keeping a notebook dedicated to just this child's medical treatment. Be sure to include complete contact info for the dr, the medical facility, & even the contact person....all in the notebook.
I do not have any experience with this diagnosis. But my daughter was born with congenital multiple heart/lung defects & my older son was diagnosed with a degenerative hip disease at age 6. At this point, we've had 18 years of the medical world with our children. Document, document, document!
I sincerely wish you & your family....Peace.
