Did you tell your partner they would have to take the Ambry tests?
I did not know about Ambry testing at the time only "cf carrier testing" and yes, I told him that before we got our hopes up of having a child we would need to get him tested
as well as evaluate my health for whether I would 1) be capable of healthily carrying a child and 2) be healthy enough to have a fighting chance to see my child off to college
college.
What was their reaction?
"I'm not a carrier. It doesn't run in my family (even though he knew I was the first in my fam with cf)" and also he said, "Lauren I'm marrrying you for you and not your child
bearing abilities." These discussions were something we discussed in late courtship / early engagement. I didn't want to marry someone who I would let down by not bearing
children. I couldn't make any promises.
If your partner was totally mutation free, how did you feel about generating a CF carrier?
Just about a non-issue.
Will you alert them about their condition before they plan having children?
Absolutely. They will learn about cf from an early age and understand the mutation they carry just like they will know other family lineage information.
And if your partner turned out to be a carrier, how did you go on with it?
He wasn't a carrier through an 89 mutation Genzyme test so we carried on with our pursuit for a child. During 1st trimester we learned our child has a 1 in 500 chance of
having cf since we didn't do Ambry or Quest's extensive panel. Son will be tested through Ambry extensively. DH will be tested through Ambry should we pursue add'l
children through my uterus.
Is there an in vitro way of selecting their good gene?
Yes, PGD
How can one be sure one is not generating a CF patient?
With spontaneous mutations I don't know if it's ever possible to be 100% sure. If so, it would be through PGD...otherwise there's always the risk of spontaneous mut's or a
new, un-id'ed mut.
Is there anyone who plain chose to not have biologic kids? Did anyone adopt?
Many cfers choose not to have children. A) They didn't think they'd be alive and can't fathom it or want it. B) They are not in good health and respectfully follow dr's orders not to conceive or C) have issues with any parent with a life shortening disease bearing their own child. or D) Think parents should not have "illness" and expose the child to the pain & suffering of losing a parent.
Yes, many cfers have adopted. Beth Suffian, CF lawyer with cf is a well known example as well as "Allie" & Ry (with cf) on this site. Ry has passed away from cf.
