Re: has anyone had children after disease diagnosed?

[Guest guest]

Yes, I had children after my dx. I had one child before dx, although

after neuromuscular disease symptoms. I got my preliminary dx while

pg with my second child. I had a third child several years after

that; I got my fresh muscle biopsy while pg with her.

Some of us on have affected children; others have children

who appear to be unaffected by mito disease. Mine seem to be mostly

in the latter category, but have some low muscle tone and my middle

child had significant developmental delays that he has mostly

overcome at age 5 (therapy since 18 months old).

Living your life in terror of the unknown is not a happy thing - have

they done genetic testing to determine whether the genetic defect is

mtDNA or nDNA?

I have a complete Complex I defect according to the fresh muscle

biopsy, but since it is considered nDNA my children are expected to

be unaffected. It is always a risk to have a child, but

unfortunately doctors tend to err on the foreboding side rather than

the hopeful side (visualize my MDA doctor shaking her head at me when

I told her I was pg). For example, 50% chance of a problem means 50%

chance of no problem as well...

I would be somewhat more concerned that your daughter has sufficient

support and ob care to have a healthy pg and take care of her child,

with or without services. There is an organization called Parenting

and Disability International, which focuses on the needs of parents

with disabilities, as well as Through the Looking Glass:

http://www.lookingglass.org/index.php

All IMHO, my experience, YMMV...

Take care,

RH

>

> I have a daughter 23 who is uncomfirmed. I have had the fresh

biopsy

> done and it shows complex I and III. My son and daughter are both

> becoming first time parents and I am not so worried about my son

but my

> daughter I am terrified about her health and the health of her

baby.

> Has anyone had any experience they can share with me.

>