Polymicrogyria
calibride2005
member
Well, I had my Athena Jane's autopsy explained to me yesterday.....My little girl had a 22q deletion and DiGeorge Syndrome, which we knew. What we or the doctors didnt know is that she had Polymicrogyria (sp?) which is a fatal diagnosis. Had they known that, they would have never done two major open heart surgeries on her. From what Dr. Bailey said, they would have just made her comfortable until she passed.
So they are using her brain and her heart as teaching tools at Loma Linda. If you don't know about that hospital, they are the best hospitals in the nation for hearts and hopefully in the future brains. Athena Jane's memory will live on and she will definitely leave her mark for future children and their families so that they do not have to endure what we did for 3 months.
The hospital is in the process of getting the funding to do in utero brain testing like they do for in utero heart scans. Once they accomplish that, they will be the only hospital in the nation that does it. God bless Loma Linda! I hope no one will ever have to experience this.
Me - 41 DH - 28 ****
Proud mom to Christopher, dob 7/15/92 ****
Nathaniel dob 1/18/05 -1/18/05 (8 mos) in heaven ****
bfp 8/26/10 m/c 10/14/10 at 7 wks. ****
D&C 10/15/10 ****
Cycles 1-4 BFN's ****
Cycle #5 - 100 mg Clomid ****
IUI #1 - 04/23/11 and 4/24/11 - 5/8/11 IUI #1 = BFFN
BFP 10/14/11 - EDD 6/22/12** Stick little one Stick! Athena Jane 5/31/12 - 8/28/12
Re: Polymicrogyria
Two Mommies Healing Hearts
This.
I am sorry for your loss. What a wonderful tribute to your daughter. God Bless.
She had a couple other neurological factors that contributed along with the heart issues....her brain was small from the get go and Polymicrogyria was the major one that had they known about, the two heart surgeries were basically useless to put it bluntly. You're right though, Polymicrogyria on its own is ok, but because she had other contributing factors that was the one that was most prevalent to the pathologist.