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Old 02-13-2014, 12:34 AM   #1
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Unhappy Genetic gamble

We are closing in on me getting my medical issues fixed which could open the door for trying to have another baby. No matter how much I tell myself there is still a lot of time before this is going to happen I can't stop thinking about it. CONSTANTLY

The thing is RASA1 is a dominant gene. Each child I have will have a 50/50 chance of carrying the malformation.

For each child that ends up with the malformation the impact can vary immensely. I have had this my whole life and no one ever knew. Abby and Ben died from its complications. Grant is fine so far. (He has it but we are waiting for MRI's to determine whats going on internally) Also even if the child who has the malformation is mildly affected what about when they go to have children, than they are faced with the same risks.

There is no way to know where on the spectrum a future child would end up. Maybe no genetic disorder, maybe devastation again.

I also have an incompetent cervix and that is not going to be fixed. This puts me on bed rest. My last pregnancy I was extremely sick but we are hoping that with the vascular repair that may improve but there is no way to know.

Has anyone dealt with similar genetic risk or pregnancy risk? Did you give up on another bio child?

I know there are more options. Egg donor, embryo donation, surrogacy, infant adoption. Right now I just can't stop thinking about one more try for a bio child. But will it always feel that way, will it always be just one more try?

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Old 02-13-2014, 08:05 AM   #2
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Re: Genetic gamble

I haven't BTDT but if you can afford it I would do IVF with genetic testing. This would allow you to only transfer embryo that do not have the genetic issue. I know that would still leave you with the pregnancy complications but from there you could chose to carry the healthy embryo(s) yourself or use a surrogate.
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Old 02-13-2014, 08:53 AM   #3
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Re: Genetic gamble

I can't do that. Its been offered as a very expensive option but we believe in life from the point of conception.
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Old 02-21-2014, 11:52 AM   #4
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Re: Genetic gamble

I also have IC, and I would strongly encourage you to research getting TAC. You won't need any bed rest at all. Look up Dr Haney in Chicago,he's the master with TAC. Abbyloopers is a great place to have all your questions answered.
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Old 03-15-2014, 12:17 AM   #5
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Re: Genetic gamble

We have 4 children...one is a boy and he has a very rare syndrome that only affects boys. Genetic tests have been inconusive for whether or not I'm a carrier (it could be spontaneous or else it is an x linked syndrome which would make me the carrier). Our son is baby #2 and has a mild case. We want more children...and with each baby we feel like we are taking a gamble. I've had 3 early miscarriages since he was born. A severely affected child with his syndrome will not survive. It's hard.

I tell myself that there are no guarantees. You have a healthy child and they could get sick or die young. There are other syndromes that can occur. I'm resolved to take it one baby at a time and pray for the grace to handle what we are given on this life. It helps me, but each situation is different.

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Old 03-19-2014, 09:29 PM   #6
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Re: Genetic gamble

just1more: This changes everything!! This could end one part of our issues. We will always have the genetic component but to not have the factor of pregnancy loss would dramatically change everything. No bed rest, No checking out of your life for months upon months, no endless hospital visits, no scary medications, no painful insertions and removal of a traditional cerclage.

happymama1 I think you are right you never know what is going to happen. There is such a big spectrum of possibilities. Our children have a 50% chance of nothing happening and the other 50% is such a huge range. I dont think its enough to stop up. The fear is there and I cant change that but I dont think it should stop us. I will always wonder not only about our children but all the generations after that could be affected. I just have to come to terms with our reality. I guess the truth is the world is full of genetic and completely random abnormalities there is never a sure thing.
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