Anybody familiar with Neurofibromytosis?

Question

My husband and I are having our first baby in March. I'm about 12 weeks pregnant and recently found out that my husband's biological mother has neurofibromytosis that runs through her family. Her mother had it and two of her siblings have it. My husband, his brother and sister are all healthy.

I read about the disease, but am wondering what the odds are that our baby will have it, and am also wondering if my doctor would want to do an amnio or CVS test...

I'm so nervous and scared... I pray that our baby is healthy, as it took a long time and lots of fertility treatments to bring him/her here.

Thanks for any info or feedback that you may have.

I may not have worded that correctly. My mother in law doesn't have the disease; her mother, my husband's grandmother, had it and my mother in law has two siblings who have it. (My husband's aunt and uncle.)

Answer 1

Neurfibromatosis can be passed on genetically but since neither you or your husband have it the odds are much less... You may want to speak with a genetics expert to get more information. I have the disease myself but function very highly despite the symptoms... There are several several symptoms that NF can manifest such as tumor growths, bone deformities, learning disabilities, hearing and sight trouble, and they can be very hard to predict. The disease is both progressive and impossible to fully predict. For most, not all, the biggest struggle is emotional struggles or depression over the physical appearance of their body cosmetically, rather than functionally. Many with NF have very mild symptoms that have little to no affect on a person but sometimes symptoms are severe and highly problematic requiring surgeries. There is no cure. All that can be done once a person has it is to offer treatment. There is quite a bit of info online that would answer most of your concerns. I pray too that your new baby will be healthy. Best wishes to you.