PreNatal Testing for HFI

[ashley1988]

Hi group! My husband and I are both recessive carriers for HFI. We were tested before having children. Our genetic counselor suggested we do IVF to have children to eliminate the disorder. We did IVF and had our son who is now 3 years old and healthy and does not have HFI. Now we are doing IVF to have our second child and the IVF has failed three times now. The 3 failures have really taken a toll on us emotionally. I am considering trying to have a child naturally and wondering if It was really necessary to do the IVF for this disorder in the first place. I sort of feel that it was extreme advice given that its a disorder that can be managed with diet. Our OB said we can do CVS testing at 10 weeks if we decide to try naturally and terminate if needed at 11 weeks via a D&C. 
It's all a lot to take in and we've been through a lot. 
I guess my question to all of you is, if you could have avoided having this disorder via IVF or other means, would you have done it? Or do you think what I'm being put through is overkill in an effort to have a "health problem free perfect family." 
I think the people advising me on how to become pregnant just aren't familiar with what it really means to have HFI. Thank you and I hope this makes sense! 

[christi]

Hi xx i had ivf and my son has HFI. Hfi is managed by diet and i personally would not risk having ivf again as it really messes with your body. Also if i have a second child it would not bother me at all if he/she has hfi. Its a much better diet and i see how much crap my son is being saves from.

[ashley1988]

Thanks so much for your response. That's so interesting you did IVF too. They didn't know you were a carrier before they did the IVF? Thanks so much for your insight. I agree the IVF has taken a huge toll on me. I've literally aged 10 years since starting...mentally and physically. Yikes. It sounds like you're doing a great job with your son. It gives me a lot of hope to learn more about what this disorder really means in reality because when I did IVF years ago the genetic counselor sold it as a lethal thing and we just followed her blindly. Thanks for your insight and stay well!

[colormist]

Many people with HFI who were diagnosed as adults were told they couldn't possibly have HFI because they would have died as an infant. I don't think they know much about the disease or how a body can direct a person toward foods that are healthy for the body.

[christi]

Aug 24, 2021 16:46:28 GMT -5 ashley1988 said:

Thanks so much for your response. That's so interesting you did IVF too. They didn't know you were a carrier before they did the IVF? Thanks so much for your insight. I agree the IVF has taken a huge toll on me. I've literally aged 10 years since starting...mentally and physically. Yikes. It sounds like you're doing a great job with your son. It gives me a lot of hope to learn more about what this disorder really means in reality because when I did IVF years ago the genetic counselor sold it as a lethal thing and we just followed her blindly. Thanks for your insight and stay well!

[christi]

Contact me on fb: christina diamandis demetriade
Hfi is a very healthy life style if you know you have it and it the allowed food