A difficult subject I struggle with

I'm not sure where to start but I've been struggling with a really difficult thing in my life of twins. Before I got pregnant I found out I was a carrier for a genetic disorder. I only found this out 2 years ago but decided to go ahead and have more children without testing. (side note I don't need anyones opinions or judegements on the topic of choosing more children with my knowledge of a possible genetic disorder)

I had the boys tested 2 weeks ago but I have to wait 6 weeks for results. I can't really talk to my family about it because it is so upsetting to them. I was the only one of my 3 sisters and cousins who had to carry a baby knowing the possibilities of passing it on since it wasn't brought to light until after everyone else was finished having their children. My older son does not have it. My chances of passing it are slim but I feel sick with worry. The boys aren't showing any physical signs of it but a lot of babies don't show anys signs until they start missing bigger milestones. I just pray they don't have it and I so badly want this whole thing put to rest so I can move forward. This has haunted me since the day I got a positive pregnancy test. UGH!!!!!!

I just needed to vent this thanks for listening.

 

:hug: I'm so sorry you have this stress. 4 more weeks is a long wait for results. Just keep hugging them close every day. You can do this...

on a side note, my brother & SIL had a child with Crouzon's syndrome. It is something that is almost always genetic but sometimes not. In their case it is not. Neither one carries the gene. A cell mutated. Just because you know you carry a gene, does not mean you will pass it on. Someone who does not carry the gene still might give birth to a child with that gene (depending on what it is). :hug:

 

That is a long wait, and it must be terribly hard to not know.

Jackie makes a good point; things happen. While there's a small risk of you passing on a genetic disorder, there's a small chance of lots of other random things happening with kids that are beyond our control. But we take the risks anyway, because kids are amazing and healing and give us a million reasons to get up in the morning. I really hope you get good results, and no matter the outcome that your family can be supportive. Keep us posted on the results, I'll be sending lots of good vibes your way.

 

I would be a mess of nerves! I hope the test results are negative. :grouphug:

 

The waiting game is terrible. I'm sorry to hear you don't have family you can talk to about it. Have you tried searching online for a specific support group for families with this?
Personally, I think it really helps to be in touch with others going through the same thing.

 

Good luck, I hope the kids don't have the disorder. Sorry you have to go through this wait time.

 

That is a terribly long time to wait. :hug: Please update us when you get the results.

 

My close friend has a genetic neuro-muscular condition call CMT. It's a dominant gene, so she had a 50% chance of passing it on to her daughter. The hospital ethicists and doctors recommended against testing her daughter until she was older (there are not any noticeable markers for the condition that appear until the child is older). When she felt that her daughter's motor skills were behind, and she was walking with an typical gate, she had her daughter tested, and she is positive for the gene.

I'm sure there are people who would say that my friend should not reproduce because she has this gene/condition, but I'm also sure if you looked that the totality of all of our genes, most of us would have genes for things that are considered inferior or bad--poor hearing, bad eyesight, colorblindess, left handedness, cleft palate. Heck I'm sure there are people out there who think short people and fat people shouldn't reproduce. Part of the challenge for my friend was the fact that when people made comments like that it made her feel like people were saying she shouldn't exist, and she is inferior.

I'm rambling a little, but my whole point is two fold. First of all, all of this newly available genetic information is a blessing and a curse, and it seems to have lead to this brave new world mentality, that we should use science combined with biased social norms to pick genetic winners and losers. And my second point is that you should not feel guilty about wanting to have kids because nobody is genetically perfect--there just happens to be a test available for this gene that you carry. :hug:

I hope everything turns out fine. Have you talked with a genetic counselor or social worker?

 

That is a long time!! My thoughts and prayers are with you but and your daughter!

 

Thanks for letting me vent. Hopefully I will have my answers in the next couple of weeks and I can move forward one way or another. I think it's the not knowing that stresding me out.