I am 25 weeks pregnant with a daughter who has a partial dandy walker malformation and hydrocephalus. I was wondering if there was anyone in Michigan (we live in Southeastern MI) on this board. My husband and I are so unsure and new to this, and I would love to have someone to talk with.
Hi, We’re not in Michigan, Nebraska actually but would be more than happy to talk with you and answer any quesitons we can. My granddaughter was born last May with DW varient and hydro, my daughter didn’t find out anything was wrong till 5 days before Tessy was born. The hydro showed on her 35wk ultra sound and she went into labor before they could do any more detailed testing, we found out about the dandy walker when she was a day old. She is almost nine months now, did not require a shunt when she was born but does have some mild delays, other than that she is a healthy baby. If you have any questions or just want to vent please feel free to email me 
I am 19 weeks pregnant with a baby girl showing DWV and hydrocephalus. I live in Windsor, Canada, but work and have healthcare in Detroit, Michigan. I’m looking for personal experiences as well, but feel I have a good Doctor that is getting a medical team to work on my case. He is also sending me to Advanced Obstretics Research in downtown Detroit that is doing studies on this, so you may want to join in that?
Sarina2008, Your post has peaked my interest. Could you tell me more about this Advanced obstetrics research? We live about an hour from downtown Detroit. My doctor so far has told me to contact a pediatric neurosurgeon for consultaton and advice, and I get an ultrasound once a month. Things are so up in the air right now and confusing. I don’t feel like I’m being given much of a “case” to work on. Could it be because I’m on Medicaid? Any advice or help you can give would be soooo appreciated.Thanks so much. God bless!
I will find out on Thursday, and all I was given was an appointment and phone number- 313-577-8832. It is on John R where Harper/Hutzel Hospital is located. I will let you know more Thursday, but I would call and see what they say. I was told that it would be free, but when I called, I was surprised that they asked about my insurance. Sorry, that is all I know for now.