unknown genetic problem and other children

[marissa]

What testing had been done? I had a son before I met my husband and when he and I got married we had to do IVF to have kids. We did some testing and nothing came up. We had our twins and 16 months later got pregnant on our own with our son who has a genetic change. Turns out my husband has the same one. They think our twins do too but the tests are t showing up with it.

[origami]

We went through these kinds of discussions when we were TTC because of suspicions of various genetic issues. Our tests came back ok so we just did Ivf due to infertility. DH is sub fertile and no one knows why so we just crossed our fingers it's not hereditary. Ditto for 2 other similar kind of health issues of his. At one point I thought I was a carrier for Fragile X and if I were we would not have had fully bio kids. That's why our discussions started and why we did testing.

Do you have a genetic counselor? I'm assuming you do. That really sucks that they can't tell you if it's hereditary or not. I would probably go on the assumption that it is hereditary, just to be safe. You could do donor sperm + IUI. That is much cheaper than adoption and Ivf. Or donor eggs + Ivf. That is expensive though. It might still be possible to pass it down but the risks might be a lot less. Does your genetic counselor have any thoughts on that? Donor eggs + donor sperm Ivf would avoid the hereditary chance but is expensive. There might be an Ivf clinic in your area that does embryo adoption. I'm not sure what that costs. There is a large tax credit for adoption, so the costs might not be as high as they initially seem...
I'm sorry you're dealing with this.

ETA: you may be able to get a no/low interest rate medical loan for Ivf. Or just make payments to an Ivf clinic, though they will probably want that done before you start treatment not sure if that's a viable option.

[craftyone]

While we are not in the same exact situation, we did decide to have another child after my 2nd was dx with Autism. My husband and I had a ton of genetic testing before the 3rd one and more while I was pregnant. Nothing came back positive such as fragile X etc. We know we had more of chance with the 3rd since we already had one on the spectrum and especially since he is a boy.

As with all my sons (3), my youngest is speech delayed and at 20 months, I am starting the process of evals to see if he is on the spectrum also. I see some red flags, but no where as bad as my dx'd son.

I do think that siblings help my middle son. His older brother is his best friend. My son also is around my NT son's friends so that exposes him to more people. Plus I hope the siblings will help if need be the dx'd one later in life when my husband and I won't be around.

When we found out we were having another boy, I remember saying to my husband that if the 3rd is on the spectrum, we will know what steps to take etc.

It's a hard choice. I know some mom's who don't have other children than their SN, and some that had more.

[Deleted]

I don't have great advice, but I can sympathize. We have two boys on the spectrum and have recently had two miscarriages.

We are awaiting some genetic test results on my boys from Wash U. They've apparently discovered more markers (beyond Fragile X) so they are testing my boys. Based on the results, we'll decide our next move. Possibly ivf with pgd, if we can afford it.

[hopecounts]

Jun 5, 2014 19:37:24 GMT -5 syllie said:

Thanks for your responses!   

They did the microarray testing when she was born and it came up normal.  Any further testing is impractical at this point since no one has a good idea of what it could be. 

I never considered IVF or IUI.  An IUI with donor sperm would still have my genetics, though, right?  Going with one of these choices is something I would be up for if we could increase the odds of having a child who is healthy.   Thank you! 

craftyone, thank you too for sharing your story.  Although I wouldn't have another child for the purpose of taking care of my daughter later down the road, I do think about the fact that without siblings she is likely to be completely alone when my husband and I are gone.  It is heartwrenching for sure. 

Yes a child born from Donor IUI would have your genetics. 
Another option if you are comfortable with letting go of the DNA connection, which understandably not everyone is, is Donor Embryos or Created Embryos. Donor Embryos would come from couples who have completed their families but have remaining embryos they are willing to donate, created embryos come from Sperm and Egg donors.
Just another option to consider. 

[Captain Serious]

If you are interesting in adopting from foster care, you should check out the adoption board on the bump. It's filled with amazing women who have and are currently in the process of adopting through all avenues, and you'll find a wealth of information there.

I adopted two "older" children internationally, which has many of the same issues as adopting children from foster care. I'm very open about it, so if you have any questions, feel free to ask.

[mrsfarmer]

I have a genetic bleeding disorder that made childbirth and after very high risk and is a dominant gene, so we chose to adopt. We started with domestic infant but are winding up adopting through foster care. The girls are half sisters and the older girl who is 2 most likely has a genetic disorder from her birth father. We know his background so we can monitor it. Adoption is not a guarantee of a 'healthy' child.

[jessnpaul]

My son was born with something called VACTERL. It's genetic, but we have no idea where it came from or how it happened (and yes, we all had genetic testing already)... or if it would happen again with a second child. He sees a million specialists and has already had 4 surgeries in his first 2 years of life (and will probably have at least one more this year), but will (hopefully) lead a relatively normal life.

With that being said, we are TTC-ing #2 (albeit unsuccessfully so far). I always pictured myself with 2 kids. #1 has been rough... I'm not going to sugar coat it. I had a miscarriage and then was on hospital bedrest with him due to IUGR (we didn't know about his VACTERL until after he was born) and he came 8 weeks early. I'm sure some people think we're nuts to go for #2 after everything we've been through, but I'm a big fan of siblings and hope to give him one in the near future.

I think DH sometimes fear if we have #2, it'll take away from all the attention/time we currently can afford #1. All his appointments and therapy do take up a ton of our time, so I'm hoping/praying/crossing fingers, toe, etc that if we ever have #2, that it will be an easy pregnancy/baby/life!!!

Good luck with whatever you decide! It's a tough decision to make.