Hypothetical discussions

[MellyH]

I was talking to my husband last night about what we would do if we found out in utero that our hypothetical future baby had Down Syndrome, after hearing about a friend of a friend having a DS baby at age 31 (I'm 31). It was a really tough conversation, and at the end I think we both decided we couldn't say what we were going to do until we were actually in the moment. The abortion word came up though. It's so hard to know how you would feel, it would be a huge decision either way.

Is anyone else filling the WTT time with hypotheticals like this? I'm not sure if it's helpful or not!

 

[katherinegrey]

We discussed it before we became pregnant so we were sure we were both on the same page before TTC, as I'd hate for us to disagree over such a major issue if it came up during our pregnancy.

 

[itsnowmyturn]

I don't think u cud ever say what u will do. Even ppl who say they would do something might feel different in the situation. I would certainly never commit to something without being in that situation however I don't feel I cud abort but that's how I feel now and I'm probably being naive x

 

[MellyH]

We discussed it before we became pregnant so we were sure we were both on the same page before TTC, as I'd hate for us to disagree over such a major issue if it came up during our pregnancy.

Yes, it would be good to know we were on the same page - I just guess I feel like after last night's conversation neither of us really know what 'page' we'd be on! But that's an answer in itself, I guess.

 

[Kitteh_Kat]

We had that discussion when the OB asked if we wanted to do any of that testing. In the end we both agreed we would keep the baby and just make life work. I think hubby would have went either way (more because of how difficult the military lifestyle can be on children, I'm sure it's even more so for the children that need a little extra help), but even though I'm pro-choice I just couldn't imagine making that decision for myself. So we refused any testing. Our daughter did end up being born with Type III Microtia, so she is deaf in her right ear for now. We found out her inner ear did develop enough to transmit sound, so hopefully in a few years surgery will open that ear up and restore hearing, but for now we have a baby that is considered to have a disability. You wouldn't know it though! She's still a normal baby that is into *everything* and just wants to go go go. I just have to remember to always talk to her on her left side.

I know partial hearing loss isn't the same as DS, but babies have so much love to give, and even if it's difficult it's so worth it to see their smile and watch them develop. Wait until you're actually pregnant before making a decision, because you might feel differently once they're growing inside of you. And you're still more likely to have a perfectly healthy baby!

 

[MellyH]

That's great that surgery will help in a few years. She's adorable!

I remember reading a blog article awhile back, Nella's Story or something like that? About a mother realising her baby had Down Syndrome when she was born. I was in floods of tears at work, it's really raw and from the heart. All the stories you hear always end on a positive, they're-amazing, we've-learned-so-much-about-love note. Maybe the people who don't feel so positively don't share their stories though? It's hard to say.

 

[mara16jade]

We spoke about this quite a bit before getting married and now TTC. We're both on the same page and understand the hardships either way, but are prepared to make decisions when the time comes. Its a difficult but very important discussion I think all couples should have. The decision (whichever way you go) will impact both of your lives immensely.

 

[Kitteh_Kat]

Thank you. And I think that can apply to just having children in general. You *think* you know how much you will love and cherish them, and then you hold them in your arms afterwards and realize you had no idea! I'm sure there are negative stories out there, and every mom has a bad day where she just can't take it anymore (see Baby Club and Postpartum). But no matter how much work they are, it's so worth it. We just found out about Evelyn's possible hearing, so we had accepted that we would always have a partially deaf child, and had thought of ways to adjust our lifestyle to make things work the best for her (me homeschooling her so she'd have one-on-one teaching, finding programs to help her overcome any potential problems with learning, saving money for an implant that could help her hear better, etc). It is more work between all of the extra appointments and getting to know the ENT department here, but it's a small price to pay to have her in our lives!

Either way I hope you have a happy and healthy pregnancy when you do get ready, and hope you have a happy and healthy baby!

 

[MrsMandy]

This is something we discussed a few years ago (though should prob revisit the topic now were close to TTC) and my hubby said - who are we to say its a 'mistake of nature'? For all we know they (those born with DS) could rule the world one day as the next evolutionary step! - maybe not scientifically correct but still a lovely way to think about it in my opinion.
But I would want the test to know one way or the other, more though so that we'd be prepared emotionally and practically to care and nurture for a child with a disability, and for it not to be a massive shock just after giving birth!

So glad I joined this forum - its already given me so much to think about during this awkward waiting time!!

 

[MellyH]

Yes, even if we decided we definitely wouldn't terminate the pregnancy, I would want to know in advance. I wouldn't want my first moments with my newborn to be upsetting in that way.

 

[MrsMandy]

Exactly! I think those months to prepare for that would be invaluable!
I couldnt imagine being excited after all the waiting to finally meet your baby, being physically exhusted and emotionaly drained from labor and delivery, and then having to cope with that shattering news!
Fore warned is fore armed as they say!

 

[lozzy21]

It wasn't discussed but when I got pregnant I told him I wasn't having any of the tests. Having a baby who is downs free is no means an guarantee of having a "perfect" baby. There are so many different conditions you could still end up with a child that has a learning disability, autism, baby could suffer from birth trauma and end up with cerabal palsy. You could get two years down the line and find out your child has arthritis like I have. A child is a blessing no matter what shape or form they come in and you should be greatfull of what you get when there are millions of women who would kill to be in your shoes.

 

[Kitteh_Kat]

A child is a blessing no matter what shape or form they come in and you should be greatfull of what you get when there are millions of women who would kill to be in your shoes.

Just because some women have issues conceiving doesn't mean a woman should only have to feel joy and gratitude that they have a child with a problem. It is a shock to be told there is something wrong with your child, and there are several factors to consider when deciding to continue on with the pregnancy or not. It is a very personal choice to make, and should be between the woman and her partner. I know I found it hard to adjust to Evelyn's hearing loss when I was told about it on the delivery table. It is extremely difficult, and I had to work to understand and accept it. I love her to pieces, and wouldn't change a thing about her for the world, but everything is not as black and white as you would make it out to be. I can only imagine what other mothers with more serious conditions have went through, but I'm sure judgment is the last thing they need.

 

[MrsMandy]

It wasn't discussed but when I got pregnant I told him I wasn't having any of the tests. Having a baby who is downs free is no means an guarantee of having a "perfect" baby. There are so many different conditions you could still end up with a child that has a learning disability, autism, baby could suffer from birth trauma and end up with cerabal palsy. You could get two years down the line and find out your child has arthritis like I have. A child is a blessing no matter what shape or form they come in and you should be greatfull of what you get when there are millions of women who would kill to be in your shoes.

I agree in principle that every child - no matter of any health conditions, is a blessing, however I think with the other conditions you mention, and the fact they are generally discovered after the day of birth, it is different as your not in those immediate, already emotionally drained, moments.
My point was with something like DS that's obvious from the moment of birth, that any mother having to cope with that news in the immediate moments after the exhausting experience of giving birth it must be awful - if I had the choice to find out and adjust to that news months before the birth, it wouldn't change the love I had for my child, but it would stop the immediate shock and sadness at finding out something that is upsetting at such an emotionally charged situation already.
I think what I'm trying to say (still half asleep) is that knowing before birth would allow the birth to still be a wonderful happy experience as you would go into it knowing the outcome, and it would not be 'tainted' by memories of finding out there were problems when you expected to just be blissfully holding your happy healthy baby worry free!

(Hope that sleepy waffle makes sense?)

 

[itsnowmyturn]

I don't think I wud want to no as it would make labour worse, u see those people giving birth who no their child has a heart defect or something and giving birth is just tainted because the baby was safe inside them.
However if they told me the baby would have a zero chance of survival and wouldn't make it through the day after birth I would maybe think twice about it

 

[wombat1]

you should be greatfull of what you get when there are millions of women who would kill to be in your shoes.

Whether or not a person choses to complete a pregnancy for whatever reason doesn't affect or help infertile women in any way and I think it's quite unfair and misleading to say things that implies it does. Abortion is a very personal choice and a choice I am very grateful for. Not just in the case that I might need that choice, but for my sisters, my female friends, any future daughters I might have. I want them all to have the choice to make a decision that is best for them because they are already alive and here and in my life and I care about them more than the potential of a pregnancy. I totally respect anyone who would never have an abortion, that is their choice to make but no one should think that their personal feelings on the matter should dictate what other people do about such a personal thing that will impact their own life far more than anyone else's.

 

[LoolaBear]

we ha ve discussed this and both of us sais straight away that if the nuchal fold test showed we had a high risk of down syndrome then we wouldn't go for an amniosentisis because no matter what the result the baby is our baby and we would love it and want it just as much as any other baby.
If i have a baby with down syndrome then i was meant to have a baby with down syndrome. i am a big believer in things happen for a reason,

 

[Eline]

I would not keep a severely disabled baby. It's hard to say beforehand what is severe. But if both the baby's ability to care for itself and it's ability to build normal social relations are compromised, I think this would count for me as severe. On this board, we all know how much we long for a baby and to build a family. To me, it would be unfair to bring a child into this world, if you know that it would be very difficult or even impossible for him or her to take care of him/herself, to have normal social relationships and to one day have a family of their own.
I know this is a judgement call and that there are disabled people who lead very rich en happy lives. On the other hand, I also know that there are many disabled people who live very unhappy lives.
It is true that completely healthy people can be very unhappy as well. But this is something you can't know about until they are living their lives. Physical problems you can know about and you can make a decision.

 

[Jaxvipe]

Me and OH always said that if something was "wrong" with our baby and they would be severely disabled that we would terminate the pregnancy. However, with DD I had the 14 week blood test done that came back as negative for any abnormalities. Then at our 20 week ultrasound the nurse did find that she had fluid on her kidneys and a spot on her heart. we were sent to have a level II ultrasound. They confirmed that she did have both of the issues and they were soft markers for down syndrome. At this point I was 22 weeks pregnant. That was my worst fear because I could feel her move all the time. The doctor recommended that we get no further testing done because he felt that she did not have down syndrome and that this is a perfect example of why someone who is 24 should have the blood test done so that we have those results to look at as well.

My DD was born perfectly healthy and although it was scary to hear the words that she could possibly have down syndrome, I will still always have the tests done regardless of my decision to keep the baby or terminate that pregnancy. And you can always have a plan but that pretty much goes out the window when you are actually in that situation.

 

[MellyH]

It wasn't discussed but when I got pregnant I told him I wasn't having any of the tests. Having a baby who is downs free is no means an guarantee of having a "perfect" baby. There are so many different conditions you could still end up with a child that has a learning disability, autism, baby could suffer from birth trauma and end up with cerabal palsy. You could get two years down the line and find out your child has arthritis like I have. A child is a blessing no matter what shape or form they come in and you should be greatfull of what you get when there are millions of women who would kill to be in your shoes.

Thanks for your perspective. Don't get me wrong - I'm really worried about autism as well, since it's in my family (my youngest brother), and I know there is a genetic component to it. I think everyone knows there's no guarantees in life. But given that you can test for some things early enough to make an informed decision, I don't think it makes sense to say 'you shouldn't test for anything because you can't test for everything'. Does that make sense?