Tell me about your Down's Syndrome pregnancy/parenting (keeping or terminating)

In My Humble Opinion
21

Oh believe me, I’m aware. It keeps me up at night, and there have been a lot of tearful conversations, because I am really not confident in my abilities… but he wants to be a dad. And he’ll be a *great *dad too. Just truly awesome.

But all you can do is all you can do. If something horrible comes up later in life, that will simply be one more proof that there is no God, and life sucks ass.

I’ll do my best, take lots of psych meds, retreat to my room when necessary, and hope that the kid connects well with my husband and with our extended family/friend group.

22

Woa, are you sure you want kids? I’m not sure your husband being a great dad is really the best reason to go for it. It sounds like you’re really not that into having kids…?

23

I know that you said you are on medication, but have you been working with a therapist? This stuff about worrying you might be a horrible person, life sucking, being unable to cope all sound like the kind of cognitive distortions that depression often causes and a good therapist might be able to help with putting things in a different perspective.

I spend some time working in a children’s hospital, and every day I’m over there I meet with parents who have seriously ill and/or disabled children. I don’t think anyone is ever “ready” when their kid turns out to have a life-threatening illness like leukemia, or when it turns out that their child has severely disabling cerebral palsy. Yes, I think there are cases where placing a child for adoption is indeed the right answer. I respect that when people make the decision to place a child for adoption they are trying to make sure the child gets the care the child needs. However, I think a lot of people who never pictured themselves dealing with a disabled child learn to adapt and cope even if it was not something they planned on or wanted.

I think sometimes our imaginations/cognitive distortions cause us to picture something as being a lot worse than the reality actually is. When I was a fairly young child, my father had a severely disabling stroke, and I remember being afraid to visit him in the hospital because I was afraid of what it would be like to see him that way. When I did visit him, though, I realized that he was still dad. Life had changed, but there was nothing to be afraid of. Since most of us don’t spend a lot of time with disabled people, I think we often tend to picture life with a disabled person as being more grim than it actually is.

One good thing about the internet is that it makes it a lot easier to find support from other people going through the same things. If something unexpected does happen after you have a kid - and I think almost every parent ends up running into an unexpected challenge of some kind even if it’s not a health problem - I hope you make a point of reaching out for support.

24

Thank you so much, all of you. Sorgine, I very much appreciate what you said about the adults you know – one of the things I think about a lot is what the adult outlook is.

Lasciel, I want to repeat that you are definitely not a horrible person.

I know that kids will have problems that can’t be detected in utero… lots of them… but it seems different, somehow, when you know for sure that there’s a major problem before the kid is even born that would mean the kid had a really high probability of never being independent. I don’t know. Maybe it’s just that I don’t love a kid in utero as much as I love, say, my current kid? That seems wrong to say, but it’s true; I love my 3-year-old about infinitely more than I loved her before she was born, and if something happened to her now, I’d deal with it in the context of her being my child for three years. I have no idea if this is at all consistent or makes any sense, or if I’m just a giant hypocrite.

My husband’s family and much of my current social group are all very religious, so I don’t think we could even talk to them about it. I guess we’d tell them I had a miscarriage, and they’d accept that and that I was really sad about it, but it feels like a very lonely place to be. I do have close friends, and a sister, that I can talk to and who wouldn’t judge me in the slightest, but yeah, Zsofia – I would think it would be really shitty not to be able to say what we were really mourning about.

25

I’ve known 2 people with Downs; both are now adults, but I have known both since they were kids. One is the younger sister of a close friend; she had some heart surgery and is pretty profoundly disabled and lives in a group home, has for a long time (maybe 20 years). I can’t even understand when she talks, because on top of everything else, her parents are/were not native English speakers and I don’t know that she can distinguish the 2 languages (though I think she understands both).

The other is much higher-functioning; her parents are/were both elementary ed professors, so they were always on top of the latest research in cognitive development, and her (now late) father is one of the most wonderful, patient, positive human beings I have ever known. She has lived independently, with help from parents and siblings here and there, and held full-time office jobs (mostly of the rote data entry sort). She has a very sunny disposition and gets along with everyone.

I really haven’t been privy to the difficulties their parents had raising them, or whether the Downs was known before birth - both are in their late 30s/early 40s now.

26

My best friend went through this several years back with a different trisomy. They chose to abort, and they couldn’t really talk to anyone about it (except for me) because their family was so religious and reflexively anti-abortion. It was painful for her during the decision-making process, and for the first year afterwards.

She doesn’t regret her decision, though. In fact, their lack of support/judgmental attitude was so free of logic and compassion that it made her even more certain that their decision was the right one.

27

Since you mentioned that you are concerned about the issues adults with Down syndrome face, you might find this interesting:
An Overview of Life for Adults with Down Syndrome.

One thing that article discusses is that it seems like many people with DS don’t get to live up to their full potential because of the social attitudes that underestimate what they are capable of or keep them from getting the stimulation and opportunities that they need to be at their best. Up until recent social attitude changes, it was pretty common for people with DS to be institutionalized - and nobody would be at their best mentally if they spent their life in an institution.

I thought this part of the article was interesting:

I think that it is quite likely that a child born with DS today will do better than the prior generations who generally didn’t get to benefit from the improved knowledge/opportunities that are available today as attitudes have changed about DS.

There is also some information about how families are affected by having a child with Down Syndrome. It seems that research indicates that most families are able to adapt positively, and there are some factors that seem to encourage a positive adjustment.

I am wondering, have you already had a confirmation test such as CVS or amniocentesis done? Did your doctor have an ultrasound and intrauterine echo set up to assess the baby’s health at this point?

28

My youngest cousin has DS. I’ve known her since she was born. She’s 24 now. I don’t know if there was a test and if her parents were tested.

She has her own apartment because her father died and he had a lot of life insurance to take care of her. She has a job in a bakery and her disability payments provide the money she needs. Her mom looks after her bills and her house, but I don’t know what plans they have for when her mom is no longer able to do it. She as a super strict routine for every single day of her life, and if it gets broken (doctor’s appointments, holidays, what ever) it’s chaos for her and for everyone around her.

I’d like to echo the statement that not all DS kids are sweet. My cousin was ‘engaged’ to another DS boy, who cheated on her with a different DS girl. They split up over it. My cousin was out of control about the whole thing, posting the other girl’s picture all over the place - Facebook, Twitter, random message boards, Instagram - calling the girl a whore and the boy a liar. My cousin posted the girl’s full name, phone number and address. Yeah, not so good.

Police have been involved, so it’s pretty nasty.

That’s the worst of it, but she’s never been the stereotypical sweet kid with DS. She’s stubborn. Up until about five or six years ago, she would bite you. She will still kick, claw and scratch if anything - anything at all - breaks her daily routine. This can be as simple as a trip to the doctor. I don’t know how her mom deals with it. She can also be sunshine and happiness, and a lot of fun. She’s ace at giving people the silly giggles over something.

I suspect that my cousin has just enough cognizance to know that she isn’t like other people and that makes her more frustrated than she can cope with. But I don’t know if that’s true. She asked me once when she would grow up like me and go to college and get a car and a house. I told her she was going to college (they called her training course that, but obviously it wasn’t) and she looked me right in the eye and said she knew it wasn’t a real college, and she wanted to know when she would be grown up enough to go to one. That broke my heart.

The other issue that doesn’t get discussed is that DS adults are that - adults, with adult desires for love and companionship and sex. That’s a potential minefield on it’s own.

I do love her, but when I was pregnant I was adamant I would not have a DS kid. I probably would have aborted one.

29

My mother had amniocentesis while pregnant with my both my sisters due to a history of late miscarriage. For my youngest sister, the test was ‘positive’ for Down’s Syndrome. My parents were upset but never would have considered terminating (they are very religious). My sister was born on her due date and is not only chromosomally normal, but won the genetic lottery, if I do say so myself. This was in 1993, though, so the test may be much more reliable these days.

30

My husband and I discussed this, and we decided quite easily that we would abort a potential DS/majorly deformed child. I agree with the idea above that, before birth, your “child” isn’t quite your child yet, at least for me.

We also discussed what we would say, and for strangers/co-workers, it would just be a miscarriage. For family, it would be “we aborted due to birth defects”. I have no doubt that some of my family would be aghast, but we were quite confident that our decision to abort would have been the right, so no shame would be attached to that decision.

If you have to make this decision, don’t be ashamed. There’s lots of people out there who will talk about how disabled children make their life more sunny or whatever, and I suppose they might, but there are lots of other stories that don’t get press about how it can ruin lives and marriages. And, as with anything that involves proving a negative, there are no stories about how an abortion of this type made lives better. I bet you there are lots of those in reality.

31

Q.N. Jones, that sounds awful. I’m glad you were able to be there for your friend. sigh My husband’s family, I think, would be dead set against our aborting, and my family would be dead set against having a DS kid (they have some extremely, um, intense attitudes towards any kind of mental retardation). So I’m pretty much screwed either way if I have to make this decision.

lavenderviolet, thanks for that – yeah, one of the big things for me is the potential for independent living. As for your other questions, I had one of those spiffy new cell-free fetal DNA tests, which (contrary to older screening methods) is supposed to have a 0.2% false positive rate. However, I understand posterior probability probably better than my doctors, and I know very well that if my a priori risk was 1/170, that one time out of four it will in fact have been a false positive. sigh So… I’m getting an amnio next week (I seem to have just missed the cutoff for CVS). At the 12-week ultrasound, it looked healthy (and had no DS markers), but I’d probably want to get another one after the amnio to find out about any physical problems, if I can. But if the amnio comes back positive, and I assume the odds are in favor of that, if I were going to terminate I would not want to wait at all, so I figure I should gather information while there’s relatively little time pressure. At worst I will have learned a lot about DS, right?

rhubarbarin, I’m surprised by that – I’ve been told that amnio is basically 100%. Maybe it wasn’t in 1993? Or maybe there was operator error?

Gleena and Sateryn76, thank you for your perspectives and your compassion. This has been a really useful thread for me.

32

[QUOTE=raspberry hunter]
rhubarbarin, I’m surprised by that – I’ve been told that amnio is basically 100%. Maybe it wasn’t in 1993? Or maybe there was operator error?
[/QUOTE]

Wasn’t there a case a while back where the baby had downs, but the tests hadn’t detected it, because the baby had chimerism, and part of her body didn’t contain the genetic markers? Something like that would always be able to fool a test, I think.

Not that I’m armchair diagnosing, just pointing out that no test is 100%, ever.

33

My friend would tell you that just because people give you crap for a decision, is not a good reason to do the opposite when you know what’s right for you. She came out on the other side just fine. Best wishes to you, no matter how it all turns out.

34

I know a woman who has a grandchild with mosaic Down Syndrome, meaning that she does not have the extra chromosome in all her cells. In her case, it’s 25%, and she does have the typical Down’s facies but none of the other medical issues they often have, and her mental handicap is not as severe as one might expect with the full-fledged condition. Mosaic ANYTHING can be in any multiple of 8, ranging from 12.5% to 87.5%.

As for this destroying the parents’ marriage, in this case the parents were already separated when the mom found out she was pregnant. :eek: Long story, and one where telling it might identify them, so I’ll refrain.

As for tests being wrong, some scientists believe that the mosaicism may exhibit itself prior to the 8-cell stage, when the cells begin to differentiate, and some cells become the fetus and others become the placenta, and it’s the fetal cells that are usually sampled in an amniocentesis. There’s some research being done into this right now.

Sateryn, you don’t know what you would do if faced with this, and won’t unless it happens to you.

35

I have a cousin who was born without part of his brain. He is mostly immobile, cannot eat solid foods, cannot be toileted, and has terrible pain as his muscles atrophy.

I know what I would do. And I wouldn’t be shamed into anything else. :rolleyes:

36

I support you on that.
People usually have no idea what bringing up a disabled or impaired child involves, and the stresses it brings to a marriage. I do.

37

I think it’s good that you’re trying to do your own research instead of just basing your decision on impressions of the condition or any particular doctor’s advice (I just mention that because, as a doc myself, I know that sometimes doctors will make statements based on their own opinions/biases and make it sound like the word of God :slight_smile: ). I also think it’s smart to take some time to think things over before making a decision.

If you haven’t already found it, here is another site that seems to have a lot of good info: http://downsyndromepregnancy.org

Some of the things I thought were really interesting from there…
A study suggests Choline intake during pregnancy may possibly help the cognitive abilities/brain development of kids with DS:
http://downsyndromepregnancy.org/new-research-shows-potential-benefits-when-pregnant-moms-increase-choline-intake/

Since you mentioned that some of your family might have a hard time being accepting of a child with DS, perhaps you might want to see if this booklet seems like it might help your family understand: Your Loved One is Having a Baby with Down Syndrome

You’ve probably seen how some people use sign language with their babies. Some research suggests that teaching kids with DS to use hand signs first may help their language development:
http://www.riverbendds.org/index.htm?page=launonen.html

The responses to this blog post from parents about “what they wish they had known” when their baby was diagnosed might also help offer some perspective since it seems like no one here on the Dope has experience from actually being a parent:
http://downsyndromepregnancy.org/diagnosis-day-parents-what-would-you-say-to-your-past-self/

38

In your research, I encourage you to look into quality-of-life for DS people as adults as well, and what kind of planning you could reasonably do for a DS child beyond your death in terms of financial and social support (beyond what the government provides). People with DS are living into their 60s now.

39

I wanted to quote this because it’s so true. Sorry you’re going through this raspberry hunter. The right answer is the one that’s right right for you. The people who might approve or disapprove aren’t going to be the ones who have to manage the fallout for the next fifty years.

40

Sigh. Yeah, that’s one of my big worries, what happens when my husband and I are gone (and since we are both older-ish, the chances the kid will outlive both of us are pretty good). I feel like I might be able to deal with the early stuff; it’s the later stuff that really stymies me.

Lavenderviolet, thank you again for the extremely helpful and informative links. Since you are so knowledgeable: are there questions I’m not asking that I should be asking, in your opinion?

Thank you all for the support. This has really meant a lot to me.