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View Full Version : Anyone familiar with lobar holoprosencephaly?

Bigwilli
05-10-2008, 08:03 PM
Our baby is going to have an MRI to help confirm whether she has it this week as the ultrasound is inconclusive. I have read rather poor prognosis for babies who have this so was looking to see if anyone was given a misdiagnosis or false positive?
Barb
05-11-2008, 03:26 AM
I just did a little research on it from your post. Sorry that I don't know anything helpful about it.
mommy2cnj
05-14-2008, 04:07 AM
Our baby is going to have an MRI to help confirm whether she has it this week as the ultrasound is inconclusive. I have read rather poor prognosis for babies who have this so was looking to see if anyone was given a misdiagnosis or false positive?

I know nothing about the medical condition you mentioned; however, I will say that my youngest was diagnosed with Dand(i or y)-Walker Syndrome (from 2 different ultrasounds). I was told I needed to abort immediately, because my child was going to be so severely (sorry, hate the term but is what the doc said) retarded and would be missing a part or parts of her brain that she would die within a day or two. I, although in a belittling way to a Dr., let him know how much of a quack he was, and walked out.

I would love to be able to take my now 9-year-old child to visit/meet him, but then again, he's not worth the time! ;)
Bigwilli
05-18-2008, 04:22 PM
Hi guys,

We got good news this past week! Our baby doesn't suffer from lobar holoprosencephaly. The enlarged ventricles in the brain "masked" the ultrasound results making it appear like something bad was happening. The genetic counselor actually took the time to have someone with more experience review the results as she knew we we were pretty stressed out.

As a side note I prayed heavily last Sunday night for God to intervene and by Monday we got this news back! Thanks to all of you outh there who are paraying as well along with others who take time to send encouragement.

More to come...It's a roller coaster ride so far!
trekman
08-16-2008, 01:38 PM
I found this link about this condition
http://en.wikipedia.org/wiki/Holoprosencephaly