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tuicatmama
member
Would you?
tuicatmama
member
So...We always wanted more than one baby...Our guy is a year now, and it's been a rough ride. (Seizures at 18 hours old, Stroke dx, etc.)
He's had just about every (brain/heart) test known to humankind, and has been doing well.
We have no reason for the stroke. We'll never have one, apparently.
My question is: Would you go to see a geneticist to see if you could find any more answers in order to possibly consider TTC again? (We know he has MTHFR). OR, do you think that it would just open another chapter of the self-blame-game?
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Re: Would you?
I have been debating something very similiar. We already know that we have a high chance of having another child with EE or another similiar disorder. Our debate is whether or not we want to do that. DS has other conditions though too, and those we don't know if they are genetic or not.
Most days I think that I want to have another one anyway. This may sound horrible, but if we have another child who has JUST the EE part, then DS will have someone who eats just like him and he won't feel so left out. We will also already know how to handle it and it shouldn't take as long for a diagnosis. But then I think I am horrid for even thinking that because then we would have had another child who is going to face pain and being 'different' when we knew there was a good chance of that happening.
We may go see a geneticist about the other conditions DS has though to see if we have a chance to pass those along. That may change our decision. I am not much help, sorry. It is just something that weighs heavy on my mind a lot too. I don't know what we will do either.
I cannot really answer your question from "your side" because our situation played out a little differently. DD had cord blood collected at birth for testing so we found out her chromosomal issue at a very early age. At our first genetics appointment, they asked if we, the parents, wanted to be tested to see if either of us had anything going on. We did and found out that both DH and I have a typical chromosome map. So, there is no reason to believe that we have any greater of a chance of having another child with a chromosome issue than any other typical couple.
It has given us TREMENDOUS peace of mind when it comes to planning for our future family. Nothing is 100%, we know, but it has helped us. Had it come back that we were carriers or had a good chance of having another child with SN, it would have been something for us to seriously consider.
We are going to one next week for DS to see their advice on his condition.
I straddle the fence on knowing. I have a genetic condition that I have a 50/50 chance of handing on, we still went on with having a baby. However, I have never been genetically tested to know that I have THAT exact mutation, it could be something similar.
I think it depends on the genetic condition and the odds whether it would influence my future family planning.
It really depends if you think that going to a geneticist would give you any more answers. We knew our son's diagnosis in utero and because of that knew our odds of having another with same diagnosis since we were both tested for it. If we had no clue the odds or the odds weren't in our favor, we wouldn't have tried for another baby. It was just way too hard and I would never want to put another baby through what our son has gone through and continues to go through.
On the other hand, knowing our odds, we were still scared to death that this baby (I am 27 weeks pregnant) would have some sort of complication. We are not naive to all the things than can go wrong and we will never take a healthy baby for granted. We definitely didn't think that we were clear for having a healthy baby even though the odds were low for having the same syndrome. We thought that our son needed a sibling and we were ready to take on another child, even if there were complications.
I think you need to follow your heart. If you feel you need more answers before possibly TTC, then that is what I would do. But, if you feel going to a geneticist would just open up another chapter of guilt and blame, I wouldn't do it.
I am sorry this is sketchy, but it is a very complicated question. I hope you are able to sort it all out and figure out what is best for you and your family.
We saw a geneticist for Peyton, but didn't really come up with anything. She was checked for a couple of syndromes.
We don't really know "why" she had her stroke in-utero either. She is compound hetero MTHFR, I'm homo. I had Dh tested when she had the mutation that I didn't, and he's compound hetero as well.
We assume her stroke was from my partial abruption. We don't know why I had the abruption though bc my previa was cleared.
I had placental issues this pregnancy as well, after being told it was highly unlikely.
Go with your gut instinct but it wouldn't hurt to see a geneticist before hand.