Anyone's child had microcephaly(small head size way below

amother

Mon, Jul 14 2014, 1:03 pm

Hi Everyone

My daughter was also diagnosed with microcephaly when she was 9 months, I also had IUGR
She was born like 4.6 lb
I was not gaining any weight during my pregancy and from the getco they could not set a due date, I had 4 diff dates ranging week apart.

The geneticist believes that she was conceived like that because of some sort of gene mutation. and also mentioned that if I were to have more kids there is 25% chance my next one will like that. So at this time in order for me to continue with genetics consultation I have to do two more genetic testing that I cannot afford, there is microcephaly gene testing -to see what caused it -like $9,000 and GENOME Sequensing also super expensive and my insurance company doesnt cover

I have 2 older daughters who B'H are so bright.
But now this daughter is almost 3 (2 years and 10 months to be exact) she is been getting lots of therapy.
She is below the 1% percentile on head circumference chart, below average for weight, but height BH is average. She looks proportional, he head is measuring now 45cm.

I have been doing research on microcephaly and it could have been much worse, I am thankful to Hashem that she ok, (meaning, she has eye contact, says baby sentences with 3 words or less, understand simple requests) she is not very communicative and she still very agressive with her older ssters, she still doesnt sleep through the night, and has night terrors.

I hope and pray that she ll be completely a normal kid (my neurologist did say that 10% of microcephaly diagnosed kids are completely normal)

amother

Mon, Jul 14 2014, 1:32 pm

amother wrote:

My child doesn't have microcephaly but does have other delays that are likely congenital. Does the geneticist want to test you and/or your husband or just your daughter? Have you had any genetic testing done?

amother

Tue, Dec 02 2014, 2:33 pm

Hi everyone! I am new to this thread but I think I can help some of you. DD has microcephaly. we've done lots of testing over the course of 2 years. To make a long story short, we did exome sequencing which orginally came back negative. a few months ago I got a call that a new genetic mutation has been found. Pretty much there is a newly found mutation that causes microcephaly. It seems to affect Ashkenazic Jews. There are very few cases known to us right now. Now that we know exactly which gene and mutation to look for, it can be prevented in future children. Also the testing for this is covered by most insurances, and if not the total cost is about $300-$350. the testing consists of a cheek swab and takes about 4 weeks for results. If anybody here would be interested in testing, or would like more information let me know.