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Post by isabellelove on Aug 27, 2012 16:45:13 GMT
Hi All,
My name is John and I'm new here. My daughter, Isabelle, is 8 months old and has lissencephaly with Tetralogy of Fallot (Miller Dieker Syndrome). Her cardiologist is beginning to tell us that they can't do any corrective surgeries for her heart without having her seizures under control. Her seizure activity is not terrible. Only very rarely does she have any seizures that are prolonged or cause her oxygen saturation levels to drop to 50 for more than a couple of minutes. I'm wondering if anybody out there has any experience with a baby having tetralogy of fallot repaired while also having lissencephaly?
It's great to have found you all here, best wishes go out to you all.
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Post by Carla on Apr 7, 2018 21:46:27 GMT
My daughter has the same diagnosis and we were also told that they would not do a heart surgery. They sent her home on Hospice and now we are just waiting around in limbo all of the time. She is almost 2 months old now.
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