When PGT isn't an option...

amother

Tue, Dec 05 2023, 3:43 pm

I was told that my child's inherited genetic condition most likely can't be prevented with PGT. BH, it's treatable, and doesn't express itself so bad in every affected child. But going forward I know there is a decent chance my next child can have the same presentation.

Anyone else go through this? Would love to connect anonymously.

amother

Snow

Tue, Dec 05 2023, 5:08 pm

I have the same thing, gene unknown. The syndrome is relatively mild. We have 2 beautiful children, one has the syndrome and then we later decided to have a second child but it is too early to know whether this one has it too.

Not sure how to best connect, happy to chat here in the meantime. Or let me know if you have another idea.

amother

Tue, Dec 05 2023, 5:36 pm

amother Snow wrote:

I created an anonymous email.

It's so lonely cuz we have to keep it quiet in our world.

amother

Blushpink

Wed, Dec 06 2023, 9:02 pm

As someone who has done pgd after much much deliberation for a life threatening disease that has a treatment but with a 10% mortality rate and with long term side effects, I'm curious.

Is it not an option because it's so mild, or because you don't know the mutation?
Are people wanting pgd as an option for every genetic thing out there?

amother

Wed, Dec 06 2023, 9:55 pm

amother Blushpink wrote:

PGT is not an option for us because it's not medically possible to do PGT for this genetic condition yet - I don't want to elaborate. Suffice it to say that as advanced as the science is, there's a long way to go.

When we were looking into doing PGT, we asked advice, of course. Is this considered too mild to do PGT for? And we were told that if it's severe enough that we think it's worth doing PGT for, then we should absolutely go for it. PGT is a gift for our future child and their future children. Not to mention for us parents.

I know what IVF entails. But this "mild" condition involves more appointments, more life disruption, more medical expenses, and more mental anguish for me than the IVF process. So I wish we could do PGT. And not play dice with our future children's health.

I'm not judging those who choose not to do PGT when given the option. Everyone needs to do what works for them in their life.

amother

Blushpink

Wed, Dec 06 2023, 10:48 pm

amother OP wrote:

Pgd comes with its own set of risks.