If you've given up a child for adoption or raised a special

[sonrisa]

needs kid, please come in.

CVS results come back in two to four weeks. (it's supposed to be two weeks, but last time it took four). (ETA: My initial blood tests were a little off but not enough to worry too much. Still, worse than the baseline for my advanced maternal age of 37/38). I know what I will do if the fetus isn't viable and can't survive to birth. The trickier question is something like down syndrome where the kid would survive but have lifelong problems.

DH and I feel differently about this. He has stated that he would prefer to terminate a down's pregnancy. I've told him I am not comfortable with that. With the first pregnancy, I felt like if it came down to it, I could raise the child myself (ie. if the stress of raising the child killed our marriage). Now I have another child which complicates things. I know there is a registry for down syndrome adoptions. As hard as it would be to part with my child, I feel like I should at least look into what it would mean for the sake of my marriage and for the sake of my daughter (who would likely become responsible for her sibling, perhaps at the same time she is dealing with a parent with alzheimer's since that runs in both our families). I don't know if I can do that to her. I'm mulling it over now because soon either everything will seem fine or these decisions will be incredibly real and incredibly hard.

Your thoughts?

(No matter how despicable you may think I am for considering this, at least I'm facing the flames under my real name not an ae, right?)

[sonrisa]

I'm just a nervous nelly and freaking out. My blood test results were a little problematic, but the odds are still in favor of a healthy kid.

[WOT?*]

This is not flameworthy. This is heartbreaking and an extremely tough decision you are facing. I am so sorry. I don't know what to tell you. We're adopting but both girls are healthy relatively speaking (I have to wash a lot of laundry since one has bladder issues and some other complications but nothing so life-altering as Downs.) I could handle a Downs baby, I would think, but having to make that decision for others if something should happen to you isn't such a simple matter. I wish I could tell you there's an easy answer but there's not. (((sonrisa)))  I hope the bloodwork comes back okay and this isn't an issue you'll have to face.  Good luck.

[goaskalice]

I hope everything comes back clean. I worry about all the same things you speak of. My wife would leave me for sure if I did not continue a special needs pregnancy, but as I'm hesitant about children anyway I do not think I have the strength and courage it takes to raise a special needs child. I also have a high possibility of getting Alzheimer's.

I grew up next door to the sweetest boy who had Down's syndrome. I know his sister will likely take over care when their mother passes.

So, really I'm no help but I want you to know you're in no way alone in your feelings.

[Deleted]

I am so sorry. we also talked about this stuff at length and it's heartbreaking, even momentarily, when we disagreed, even though we talked it through enough to understand the others side.

I hope you don't have the face these decisions and i don't blame you for wanting to think these things through. I have no real answer but i don't think i could have terminated for downs (but was seriously considering it for cf). Weird maybe.

How was the cvs for you? Are they doing the FISH or are they culturing everything? The wait is the worst. I deeply sympathize, sonrisa, and if you need to chat more I'm here.

[themoneytree]

We would terminate although it breaks my heart to say it. To have a baby with Downs would cost me my marriage and there is no way I could do it alone.
I don't know that I could go through the whole pregnancy and then give up for adoption at this time in my life (married, financially stable, etc), but I know my DH couldn't do it.

I was so worried about this when I was pregnant and everything was fine. Don't make yourself crazy with 'what ifs' until you get your results back.

[Deleted]

I'm 45 and TTC #2 so there's a distinct possibility I will be where you are right now. My H and I decided the first time around (I was 41) that we would terminate a pregnancy that resulted in a child with Down Syndrome. I agree with themoneytree that it's really painful to say out loud but that's the honest truth.

I'm praying that you receive good news and sending thoughts of strength and patience your way. (heart)

[cleo29]

I don't have experience raising a special needs child, but one of my SIL has Down Syndrome. Other than surgery for her heart when she was maybe a year old, she has not had continued, constant health problems. She has braces she wears on feet/ankles for when she will be walking or standing for a long time and my MIL watches her diet to keep her slim and makes sure she goes to bed at 9 each night, all for the health of her heart and body.

She is a sweet, outgoing, fun woman. And H's parents have saved money to set aside for her care when they are no longer able to do it themselves. This is not something that will fall just to us or H's oldest sister. on that matter, both SILs are quite close.

I think it can be scary, but I don't think having a special needs child is the end of the world.  And they, I don't think, will be able to determine how high or low functioning that baby might be.

There is a group in NYC, I know, that allows couples who know they are having a baby with DS spend time with their family and child who also has DS so that they can see what it really entails and ask all the questions they might have from people who are living it now. Maybe they have something like that near you. I think, in addition to adoption options, it would be worth investigating.

I hope that the tests come back fine and that this will not be something that you truly have to face.

[snickers]

I am hoping you get good news, and sooner rather than later.

[Deleted]

Do you really think you could make peace with giving up your child because your dh wanted him/her terminated? To be honest, I don't think you could do that without irreparable damage to your relationship.

As far as your daughter, I think having a SN sibling can be a huge gift. It teaches acceptance and compassion. DS people aren't just a bag of massive needs without any reward. They bring a unique and often very loving personality to the table. And there are many resources for adult care of people with DS. There are ways you could lessen the burden for your dd.

I think you're borrowing trouble right now, but the short answer is that you can't give up a child, in any capacity, that you want. There is no reconciling yourself to that for the sake of others. The fallout would be too destructive.

[jigsy]

(((Hugs))) it's an unbelievably tough spot to be in. I worked at a care facility for high functioning people with mental disabilities, some with downs. The residents were some pretty amazing people, but it's not always easy to care for them too.
Whatever happens, I hope you really come to peace with it, otherwise I think you could still have marriage problems and no child. But I'll be hoping that everything is a-okay for you.

[Marle]

Dude you're way over thinking this. Don't worry yet.
You'll have enough time to make a decision once you know for sure. This is a waste of neurons.

[Deleted]

Only you know what your heart can handle, and there's nothing wrong with whatever you were to decide.

[saraandmichael]

man, this is a heavy question.

when i was pregnant with evan I remember having a conversation similar to this with michael. he said he wouldn't want to terminate if there was something wrong, and even said he didn't think i needed need any additional testing (like the trisomy 18 stuff) because it wouldn't matter to him (i did it anyway, because i'm not good with not knowing). at that point, before the tests came back, i had pretty much convinced myself that i felt the same way he did. but in my most private moments, i remember feeling fear about whether or not i could raise a child with serious health and mental issues. i had the same feelings you do about an older sibling bearing a responsibility for them once my husband and i were no longer capable of caring for them or having passed away ourselves. it was very overwhelming and was pretty good at suppressing the reality of it after a minute or two.

anyway, all of that to say that i do not think that your thoughts are flameworthy. i think they are normal and responsible and characteristic of just how much you love your family. and at the end of the day, i don't think postulating what i would or wouldn't do matters. i don't even think that you doing the same is indicative of what you will really do, should you be faced with that decision.

i can, however, tell you that raising a child with special health needs is very difficult sometimes. the constant worry and needing to be conscious of your decisions and motives for them all of the time is exhausting. the guessing of whether or not you need to call the doctor this time or wait it out is one of the biggest mindfucks i know...especially when you are the one making the decisions and being deferred to when they are necessary. the hospital stays, the medical bills, the constant doctors visits...it is overwhelming on the best days, and fucking brutal and depression inducing at their worst. and i feel like i for sure have a better case of special needs to tend to.

i don't even really know what i'm saying anymore, and i'm getting a bit off topic and emotional to really concentrate on your question. but i don't think you are despicable for this. and i would answer any and all emotional aspect type questions you might have if you'd like...either here or via pm. or if you just want to spew stuff out, i'm good with that too.

big hugs and love to you, sonrisa. i think you're pretty great.

[fryjack2]

sonrisa - First, breath. Easier said than done, but try As of right now, your baby is perfectly healthy. Try not to grieve something that hasn't happened yet, but keep having conversations with your H.

How elevated were you tests results? Mine were elevated for downs (blood work, absent nasal bone in twin A) so we did more genetic testing and that showed we had an increased risk for Fragile x. H and I are both in medicine and had discussed at length what we were comfortable with in terms of diagnosis. I was still devastated. As easy as it was to talk about hypothetical situations, it was a different story when it was reality. H was ok with fragile X, I was not.

We ended up being followed by the physician who mapped the markers and predictors for Down syndrome. We opted not to have a cvs done because of the miscarriage risk. We were already being told twin b was most likely going to be miscarried on his own. We ended up being ok with (after a lot of long tearful conversations)a potential DS child.

What helped me during the follow up testing was to look at the numbers. A 1 in 100 chance means that there is a 99% chance that everything is fine. Flip the stats to the more favorable side and focus on them instead until more difinitive results come back.

Having a special needs child is stressful from what I have seen, I don't think anyone would argue that. Only you know what you and your husband's relationship can handle.

I wish good cvs results for you and some peace with whatever decision you decide. ((Sonrisa))

[marissa]

We have a son with a genetic syndrome called 16p11.2 duplication, we also have 2 other kids with autism. I have a friend whose daughter has Down Syndrome. Before having our youngest, my husband said he didn't want to parent a special needs child. We didn't find out until he was 2. I can understand your concern but I will tell you seeing my boys grow and develop has been a special gift where I relish in small things rather than the larger picture. Yes, our marriage is tough at times...my friend said hers is difficult right now as well. Her husband has checked out of all kid related things...the only one who can figure this out is you. Personally, if my husband demanded a termination I'd be pissed! Mine knows how I feel and wouldn't mention it at all. I'd contact a group and see if you can talk to the, before making any decisions.

[spedrunner]

i really feel this is a personal choice. I teach students with severe and profound disabilities AND had a brother with autism (amongst other things) that was very severe.

I personally would NEVER change a thing. I think my students with special needs are the most amazing, fun and motivated students i have ever met. I am sorry taht you and your H are not on the same page. This is a decision that you need to make for YOU and your child. I will keep you in my thoughts and prayers. And i love this blog BTW

www.kellehampton.com/

[Deleted]

I'm really sorry that you're even having to start the process of considering this. I wish you would hold back on worrying until you know something but that is easier said than done.

My honest opinion: I don't know that I would be able to carry the baby to full term and then give him/her up for adoption.

Ugh. I don't know. Just hugs to you. I hope you'll hear good news soon.

[shoeless]

((hugs)) I'm so sorry that you are going through this, praying that your CVS results come back normal.

[Jalapeñomel]

Jun 9, 2013 8:00:06 GMT -5 Marle said:

Dude you're way over thinking this. Don't worry yet.
You'll have enough time to make a decision once you know for sure. This is a waste of neurons.

This is what I'm thinking, cart before the horse. You are going to make yourself so sick with all these worries you have had with this pregnancy.

(((hugs)))

[LeggsBenedict]

I just want to echo betty and quesera. Hugs and good luck.

[chickadee77]

Hugs to you. I agree that it's good that you're thinking about all of this now. I hope everything turns out well.

Something that helped bring me a little bit of peace was knowing that no amount of worrying was going to change the outcome; the cells have already divided.

[speckledfrog]

We went through this when I was pregnant and MH would also have wanted to terminate if the amnio came back with any genetic defects. The waiting period was so difficult. No one can tell you what is best for your family, only you know that. The rest of us can only make feeble attempts to sympathize or explain what we would do. Here is my contribution:

1. There are people here who will support you 100%, no matter what you decide. We know this is difficult and we know that any decision you make is the one that is the best for you and your family.
2. I debated on sharing my personal anecdote, because it doesn't really matter what I would do, but I wanted you to know that you are alone in what you are thinking. If my results came back poorly I would have terminated. I wouldn't have hated my husband or divorced him or seethed in silent anger because the ultimate decision was mine to make. It is difficult to describe, but I felt an obligation towards our marriage and in my situation and between MH and I, I felt like it was unfair to have a baby that he didn't want and didn't feel prepared to raise. It would have been unfortunate and it would have been sad but it would have been the best decision for us. I know that it's wildly unpopular and it is one of the reasons why I am not telling anyone IRL when I get pregnant the second time until our screening and possible follow up tests are complete. It's such a charged topic and what works for one person doesn't necessarily work for another.
3. Do what you feel to be right. ((sonrisa))

[gretchenindisguise]

I think you're making yourself crazy for an unlikely eventuality.

Wait until you have all of the testing done. If something comes up, then you'll still have plenty of time and then you won't be dealing with hypotheticals. And we all know people make different decisions in reality than hypotheticals.

I just don't see the point in worrying and planning to the degree I feel like you're currently at.

Sent from my DROIDX using proboards

[litebright]

As a parent of a child with SN (ASD), I would terminate a pregnancy if I knew something was wrong. My DH would be very, very reluctant to do so. We will not be having any more children -- in part because autism isn't something that can be tested for prenatally, and I am terrified of having another child on the spectrum -- which we have higher odds for than people who don't already have a kid with ASD. And in part because if it came to a termination decision due to something dx'able, I do have fears for my marriage.

I don't think you can underestimate the impact of a child with SN. The fear for the future -- hers and ours -- is overwhelming at times. DD1 is a wonderful, sweet, well-behaved child that I adore with all my heart -- but it's not her childhood I'm worried about, you're supposed to take care of your kids for years and years. It's her adulthood. Even though she's high-functioning, the stats on adults with Asperger's able to hold a job is like 15%. The thought of saving for her support during adulthood as well as our own retirement, college for DD2, etc. makes me want to cry. We're very hopeful she will be independent, but we just don't know.

Luckily, she doesn't have medical issues, severe behavioral issues, aggression, sleep issues, etc. and we are able to take her out in public without issue. I know families who do not have those positives.

The finances are stressful to say the least. People think there are just "programs" and "help" that appear when you have a child with SN and although there are some, it can be very hard to get, income-dependent, and insurance doesn't cover even nearly close to all the needs. If we were doing the gold standard of treatment, we'd be paying more than $50,000 a year in therapy costs, and closer to $100K. We do what we can, but even that comes with a huge amount of guilt about how much we *aren't* doing.

I suppose some would call it selfish, but I want to have a life someday where I am not a direct caregiver. I want to have a comfortable, reasonable retirement. I want to give my kids a life that is as close to typical as possible.

I already may not get that, although we try to stay optimistic. And of course anybody can still end up with a child with SN -- we didn't find out until DD1 was three, and there are many, many diagnoses that don't get caught in prenatal testing. But I would not choose it for my child, my family, or myself.

[Marle]

The thing is sonrisa. As many have pointed out here. You may have everything decided now but if it really happens you may not feel the same.

My suggestion is to spare your mental health. I did the same thing. We have always planned for only one kid and a kid with issues would have been less than ideal. We had decided to terminate if there were issues. But as time went by and it got close to the testing time and that baby had been growing inside me I started changing my mind. I talked to DH petrified of the prospect of having differing opinions. In the end I worried and cried for day for nothing.

So let's reach a compromise here. Look up you options if this is what you'd like to do. Know what they are as information to make a decision once you know for sure. But don't invest so much emotion and add the ending of your marriage to it.

Good luck sonrisa. I for one am confident that your baby is just fine and my suggestion comes from a good place. I'm not rolling my eyes at you I went through the same fears.

[spellingbea]

I went through a similar situation--37-38 years old and tests showed an increased risk for Downs. Waiting for my Maternit21 results was horrible. I'm not sure how people can just decide not to worry about something like this, as other posters have suggested. It was the only thing I could think about.

For us, we would have terminated. She would have been an only child, and it was just too painful to think of her alone after DH and I died, regardless of what "services" were available. Considering adoption is not flameworthy at all. For me, it just wasn't the choice I could make. Thank goodness, everything turned out okay with DD and I hope that is the case for you, too.

Regardless of what choices other people make, there is no right or wrong answer. Huge hugs to you.

[sonrisa]

Thank you, everyone, for your thoughts.

The chances of an identifiable genetic abnormality are around 20%. For me the options are to "not think about it" and actually worry all the time, or research and direct my energy. For me, allowing myself to think and gather more information quells anxiety. I know a lot of people don't work that way.

DH's only brother has Asperger's. He is high functioning, holds a job and lives independently (in that 15% litebright ). Nonetheless, he had some issues with violence as a kid and it took it's toll on the family. It definitely affects how DH feels about special needs. He also works in the public sector providing services to those with certain needs. He knows the limitations of such services and the funding caprices that can cut such programs without notice.

[Booze Raccoon]

We went through this, but with our first (and now only) child.  We had a 51% chance of downs.  DH said he could have terminated, I could not have.  We chose an amniocentesis and as it turned out, she did not have DS.  My main concern was her adult care should she need it after we pass away.  

Personally, I don't think I could have given her up for adoption, actually we didn't even consider it.  But if it came down to it, I'd give up my husband for a child without consideration.  

[EmilieMadison]

I'm sorry you have to think about this, sonrisa. But, like you, I would HAVE to think about it, try to plan for it, and figure out my feelings about it. Waiting for answers is horrible, but "hypothetical planning" would be the only thing that would keep me sane in the mean time.

And for me, I would have terminated for a number of conditions, possibly including Down Syndrome- especially for #2. That would have been my choice, but DH was in agreement. We both understand (as well as one can without living the situation) what it can take to raise a SN child, emotionally, financially, etc, and as cold as it may be, the statistics for marriages in which the parents have a SN child. Marriage is hard enough as it is. Life is hard enough as it is. We wanted to be realistic about our future, as well as the futures of a child with SN and any typical children we might have.

Obviously, only you know what you should do (even if you're not sure what you should do right now). Just know that whatever the results, whatever your decision, WE will support you.