Pretty much the title: tell me about your (or someone you know)'s experience with Down’s Syndrome, whether with keeping the pregnancy or terminating it. I’m interested especially in the parental aspect (e.g., what’s it like parenting a Down’s Syndrome infant? how do moms feel after termination?) but from any perspective is great.
I’d prefer no judgment on either side, but yeah, I know, this is the Dope.
My goddaughter has Down’s. Her parents are severely reserved, but did tell me that a protein associated with Down’s showed up in a prenatal test, but then they never mentioned it again. Never even announced “she has Down’s.”
So I don’t know what I can offer you. They’re pretty affluent, and my now-ten year old goddaughter has plenty of therapy, goes to a summer camp where the counselor to camper ratio is 1:1, but is otherwise being mainstreamed. She’s sweet but stubborn, had braces on her legs as a toddler, can swim, reads a little bit, and will probably be able to hold a job when she grows up.
Not exactly what you’re looking for, but we crossed paths with Down briefly when our son’s 12-week sonogram showed a buildup of fluid at the area of back of his neck called the nuchal fold. This is a possible indicator of Down Syndrome. We spent several days in worry before followup chromosomal testing showed that DS was not present, and the nuchal fold indication was a false positive. Hard decisions loomed during that time, but we ultimately did not have to make any.
Nobody in my family has Down’s, but one of my Facebook friends has a young adult son with it, and they didn’t have any idea he had it until after he was born. And they have said many times that even if they had known, and known the challenges they would face, they would never have considered aborting him. They will admit that they are not qualified to make this decision for anyone else.
Their daughter has two children of her own, and felt pressured into prenatal testing and always refused it. Her kids are both normal.
I would suggest taking a look at the resources for expectant parents from the National Down Syndrome Congress. They have a brochure of advice from parents here: PDF file
This short video featuring adults with Down Syndrome talking about their lives is worth watching since I think it dispels some of the stereotypes about what DS affected people are like.
It’s also worth mentioning that there is actually a high demand for children with Down syndrome among adopting families, so adoption is a viable option if you truly do not feel that you can parent.
Couple other stories that might be worth looking at which I had forgotten to mention before:
this ESPN story about a “perfectionist” father’s reaction to his daughter having Down syndrome
And here is some advice from a young woman with Down syndrome about teaching children with Down syndrome. I think it has a good message for anyone who is dealing with people who have Down syndrome.
A few years ago I was working with young people with developmental disabilities, several of whom had Down. Two of my colleagues were trying to get pregnant. One had three heartbreaking miscarriages, the other aborted a baby with Down.
There were no hard feelings or anything like that. But it was… I don’t know. Just very difficult. It was completely up to her, of course, and a more than fair decision for her to make.
I’ve worked with lots of kids with Down. They’re all very different, there isn’t really anything general I can say about that. Great kids to work with, all of them! 
Thanks, Dopers, this is all very useful and interesting! You guys are great.
My sister works in the medical field and has interacted with a number of Down Syndrome kids, but I don’t think I know a single one.
As someone who has worked with kids with Down syndrome, I have to echo what gracer said: they are all different. The stereotype of them all being sweet is bunk. Many of them are, but they have the full range of personality types, from mean to class clown, and they range all over the map with level of intellectual impairment (in rare cases they’re not impaired at all) but most will be in the mild range, which means they have a lot of potential for good quality of life. I work with disability experts, and more than one has expressed the idea that these individuals tend to have better outcomes than any other group of people with ID.
I’ll honest in saying that I personally would have aborted a DS baby. My mom was a special education teacher and I personally think it is cruel to knowingly bring kids with such huge problems into the world deliberately. I have an acquaintance with twins one of whom has DS and it has not been easy for her to say the least. Author Martha Beck wrote a very good book about her choice to have a DS baby.
One of my coworkers has two young-adult children with DS, and they are at two different edges of the spectrum. One is sweet and easy to manage, is somewhat mentally disabled, and not very physically affected at all. They had a celebration recently because the child progressed from single-digit addition to single-digit subtraction in math. The other is severely mentally disabled (can only count to 20 if the lesson is repeated consistently every day), emotionally unstable, has to have full-time qualified care to keep the child from injuring self or others, and will require that level of care or higher for life.
It’s hard. Not the kids - my coworker loves them both dearly - but managing the finances and navigating the bureaucracy to get their care handled, and make sure they are getting all the services they’re needing and entitled to… yeah.
The coworker does really well, but there’s still a lot of missed work, and a lot of stress that we can all see - and we’re just professional acquaintances. I can’t imagine how hard it has to be to keep on top of everything, and then deal with the emotional difficulties as well.
I think it makes me a horrible person, but I already am only having kids because my husband wants them so badly. We’ve agreed that if there are any disabilities at all, we’re giving them up for adoption, because I don’t think I would be able to cope, and I would end up resenting or hating the kid, and that’s not fair to them.
I don’t know if I’m in much of a position to post in this thread, because I’ve never been pregnant and I have no realatives with Down’s Syndrome. But I had a teacher who wa against terminating Down’s pregnancies, because she had a sister with Down’s Syndrome.
Thank you – I really appreciate everyone’s honesty and willingness to share.
(and Lasciel – I don’t think you’re a horrible person at all.)
I may know someone who chose to terminate a pregnancy due to having been told the child would have Down’s, but I don’t know that I know them. It’s not something that’s likely to come up in conversation.
I do know several people with Down’s: many of them were born back before there were tests, but these are all from families which would not have chosen an abortion. This means that while the surprise was a bitch to swallow, they were also loved and wanted from day one. I also know several younger ones who knew the kid would have Downs but chose not to abort.
In order of age, and for the three I know best:
51yo male. Heart issues (has a pacemaker), coke-bottle glasses which he’s always “lost” when not working (he learned pretty early to “lose” them atop a specific location, so that at least there would be no need to search the whole house for them). Number 10 of 11; the doctor recommended having another child because this was considered to help assuage feelings of parental guild (the probability of having a second DS child was considered not-quite-zero-but-almost).
Sweet dude most of the time but he’s been known to throw the occasional stomping, furniture and wall hitting tantrum when he didn’t want to go through a medical procedure. His younger sister has power of attorney for him: it used to be their mother, but she now has Alzheimer’s. As soon as they got the diagnosis, the family had both PoAs drawn. Isa is both the younger sister and the one everybody agrees has the best head, so she got them.
He lives with his mother; every other sibling lives in town and most within walking distance. He’s currently his mother’s semi-primary caretaker; while he can’t make medical decisions, he’s able to tell when she’s in worse shape than usual and call one of his siblings to come over (one or another visits every day anyway, but if the mother is disoriented it’s best to have one of the eight daughters come help her dress), he can make simple meals or reheat them…
Works at the binding company owned and operated by the local “association pro people with mental discapacity”.
41yo woman. Has a law degree obtained through the Spanish Long Distance University because she wanted to make it clear to all and sundry that she hadn’t been “gifted” the degree. The teachers could hear during phone tutoring sesions that she has a bit of a speech impediment but they didn’t know she had DS. 4 of 5, on the same reasoning as the family above. Evidently not the most common case, but we’re talking about a family where collecting college degrees is considered par for the course; I think even the parakeet might have an above-average-IQ. Her mother says “we were told to make sure she got enough stimulation. Stimulation? This family would stimulate a graveyard!”
Works as a lawyer for, among others, the aforementioned association. Most of her work focuses on people with discapacities or serious mental illnesses: PoAs, emancipation, group homes, making sure that a building which is being reformed to make it up-to-code regarding accesibility really is accesible, or that the measures being put in place to mainstream a student are appropriate to the individual and not a cookie-cutter for a different shape.
Male, 50. No glasses. Has a heart condition, managed. Mental age about 13. During potlucks needs to be reminded that you can take more than one trip, the food will not run away. Lives with his sister (parents deceased), works at the same company as 1. Loves going to Mass, specially to any Mass where he can sing, and specially if he can do it at the top of his lungs; the end of Christmas makes him very sad because he needs to put his zambomba away for another year. Anybody who dares complain about his singing will face the wrath of every little old lady within a hundred miles, militant atheists included.
It’s a damn difficult situation to be in. These are more or less ok, but one of the reasons they are ok is the existence of that local organization; another is a UHC system under which taking care of their heart conditions, diabetes or ear infections is considered routine; all three have enough relatives that there would always have been someone around to take care of them (the second one doesn’t need more “taking care” than anybody else, but that was an exceptional roll of the dice as well as an exceptional family).
This is something that has been much on my mind lately, since we’re trying to conceive, are neither of us particularly young, and would probably decide to abort a Down’s fetus for a variety of reasons.
What the hell do you tell people? You can’t tell them you aborted it, not people who aren’t close to you. Do you tell them you had a miscarriage and lie? And how shitty is that - either way you’re mourning the baby you didn’t have, but it’s got to be harder on many levels to not be able to be honest about it. We’re terrified of the possibility.
ETA - on the other side, I know two people who knew they were having a Down’s child and proceeded with the pregnancy. One is a coworker, and has an older child (age 7 or 8 I think) as well as the younger disabled child, who is maybe two. I’m Facebook friends with her. Sometimes the older kid is in a photo… if he’s with his little sister. Otherwise he’s practically invisible, and literally every single one of her posts is about the little girl. It makes me so sad for that older kid.
I don’t think you’re horrible. I do ask you to consider this: not all disabilities are detectable at birth–for example, autism, in some cases. Also, some disabilities (such as paralysis) may be acquired through an accident. Think over what you would do in a case like that.
Personally I think it’s fine to say something like you “lost the pregnancy”, if you really need to say something. Of course, it would really be none of their business, but if you feel you should say something I think it’s perfectly true. The reasons may be your own, but you can still feel grief over the loss of what you briefly thought was to be. In that sense you are telling the truth.
And kids develop problems that aren’t disabilities, but can be just as difficult to deal with - chemical abuse, teen pregnancy, getting into fights, being bullied and bullying. “Normal ordinary” kids are not easy. Throw in a “but I LOVE him” boyfriend who wants your seventeen year old daughter to move to Vegas with him, and oh, my.
My cousin doesn’t know where her twenty year old daughter is, she took off a year ago with a mentally disturbed boyfriend she is trying to “save”- neither of them have a job, and she calls home once in a while to say “I’m ok.” My aunt got to find internet porn of hers - and these are “normal” kids from good, decent families.
My mother had three - all good students, all went to college, from the outside and ideal family of wonderful kids - I had issues with sexual abuse as a young adult, my sister spent some time in a locked ward for depression - then my mother supported her recently through breast cancer, and the baby almost drank herself to death. My parents are wonderful, my upbringing was supportive.
This is pretty much what happened to us. The first ultrasound came back indicating DS, the next set of genetic tests was all clear. Turned out the Doc doing the ultrasound review had read the results incorrectly, which combined with our kid being a big baby and a bit older than originally thought…gave us a week of sleepless nights.
Had the results of the amniocentesis come back positive we had decided to terminate. Based on a few things, including experience with a family friend who had a very high maintenance DS child which really tore the family up.
We discussed our options with our mothers - my MIL is an RN and my mum worked with mentally & physically disabled kids for several years (she is also a good - but very practical - catholic). Both supported us in our decision to terminate it things didn’t work out.
When I miscarried I just told people “It didn’t work out”. No one asked any further questions.