Post by rysmom14 on Aug 1, 2015 6:19:53 GMT -5
I just wanted to pass on some information that I received from my genetic team for the good of the group. I have seen similar posts before, but this may be helpful to others.
I recently found out that I am pregnant with baby #3! SURPRISE!!! since Ryan’s diagnosis, we were concerned about the possibility of passing this on to the new baby as well. While we knew the chance was 1 out of 4, I wanted to be proactive and have the testing done asap because I was not able to breast feed with the twins and the formula Ryan was on was very high in sugar and started the downward spiral.
The plan our genetic team has in place is that when the new baby is born, they will do the blood test and send it away to the lab and run for the HFI mutation. As a stat request, they should have the results in 14 days. Once we know if he/she is HFI positive or not we can adjust formula/ food as needed. In the meantime, I have canc of the progestimil formula ( From Enfamil) left over from Ryan and I will be using that just in case I am not able to breast feed again until we get the tests results back.
While there is an option to do an amnio and find out the status before the baby is born, I am not going to go that route because of the risks and the fact that if they do have HFI, there is nothing that can change that and finding out after they are born is soon enough.