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Post by mariany on Apr 6, 2011 13:52:40 GMT
I just lost a baby on march 20 he had lissencephaly he was missing almost al his brain (very serious) they dont know why he came like that. I am very sad and concern for my future I need to know if someone have had a baby with lissencephaly and have had another baby healthy. Please let me know and what have the DR. say about chances to have another baby with that condition.
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Post by Jennifer B on May 19, 2011 4:16:51 GMT
I'm so sorry for your loss. Our daughter just passed away on Feb. 25th from Miller-Dieker, a type of lissencephaly. She was only 2 months old and it's hardest thing I've ever been through. Our genecists did some testing on my husband and I and we are not carriers so he said the chances of this kind of thing happening with another child is super rare, like .01%. You can do a blood test thru a local lab just to be sure. My OB said next time they can do a specific test in the first trimester to look for lissencephaly or MDS. Let me know what info you get. If you need anything or just want to talk please feel free to email me. You and your angel are in my prayers.
Jen RockstarRDH@hotmail.com
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Post by MonicaRomano on May 31, 2011 0:38:05 GMT
I am so sorry for your loss. My heart goes with you both. I run a group to support families living with this condition and the members of the group have children with big differences in severity. I know about 40 families.And many have more than one child. If you want to get in touch with them email me on m_romano@hotmail.co.uk. Thinking of you both.
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Post by Robinson on Jun 14, 2011 10:30:42 GMT
It's so sad to here about your loss and I hope you have plenty of support around you. I have had 2 children following Emily's birth. Jane and I are not carriers and we had some MRI scans whilst Jane was pregnant. There have been some studies at Sheffield University hospital looking into the prevelance of subsequent births qith the same condition. If you live in England it may be worth speaking to your consultant if you do choose to have another baby as they can make a referral. Jane and I found it very supportive and reassuring to know what was happening during the prgnancy and also we could preapre if need be. Sorry if I have waffled on but feel free to email me if you wish stuartprobinson@hotmail.com
best wishes Stuart xxxxxxxxxxxx
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