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Is there a thread for moms with children born with microcephaly?

post #1 of 6
Thread Starter 
I am looking to talk with someone who has a child/children with microcephaly. I just need a little support, information, and a sense that I'm not in this alone because my husband is in denial and has been for nearly 2 years since our daughter was born.
post #2 of 6
Have you tried the Special Needs forum? I'm not dealing with this but I wanted to respond and try to help.
post #3 of 6
My son has microcephaly. The back of his head is quite flat and doesn't stick out like most kids, but his face is close to proportionate to the rest of his body. He has a super rare chromosome defect (he is the 10th reported case). So far the only real annoyance is that it's hard to find winter hats to fit him.
post #4 of 6
moved to special needs.
post #5 of 6
I have a child with micro. We haven't done a head circ measurement recently but he will be 6yo next month and hats designed for six month olds are a tiny bit big on him so his head is extremely small. DS has a whole laundry list of medical diagnoses resulting from two genetic syndromes a result of an unbalanced translocation between chromosome 4&7. Did your child form that way in utero (like my son) or was it a result of brain damage? My son's is from his genetic conditions and because the brain and eyes form around the same time the same genetic issue that made the brain underdevelop also made the eyes underdevelop so he has bilateral optic nerve colobomas, retinal problems at birth that have seemed to be cleared up (or misdiagnosed unsure of which), significantly far sighted and bilateral microopthalmia (small eyes). Yes, my son has an odd shaped head as well, neurology said the odd shape is quite common in micro kids. I wish I could give you more concrete info but each micro kid is different, there are some who have no delays or disabilities at all down to those who are severely impaired. My son is somewhere in the middle of that range but definitely closer to the severely impaired side.
post #6 of 6

Hi. How is your son as far as his development? If you don't mind me asking :) Thank you

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