r/downsyndrome

So, after my wife and I got a DS diagnosis for our soon to be child, I saw that 1 in 300 babies have DS. I feel like that number is pretty high and I’ve been wondering why I don’t see as many people with DS in the general public? I’m in Dallas and the support systems seem to be really robust here so I feel like I would see more parents with their chronic homies out and about, but I haven’t seen any since our diagnosis, or if I go to meet a family who we know has a child with DS. Where is everyone, do parents just find it easier to keep children with DS at home or is it too difficult to go out?

This is my first post here - i just dont know where to turn. My first pregnancy turned out to be a blighted ovum which was a shock and devastating. The second pregnancy ended up as a missed miscarriage. I saw the baby and heartbeat at 7 weeks but was measuring 6 weeks and next scan showed no growth and no longer a heartbeat. Third pregnancy we made it to 12 weeks with everything looking great and thought i was out of the danger zone but nipt test showed downs syndrome. I am 38 so knew there was a small chance but never actually considered it to be a reality. I dont know what to do or why this is happening- all i ever wanted to be is a mum but I never imagined a life of potential struggle for my child. We also dont have much family around and it worries me that we may leave our kid on this earth without a carer. How am I supposed to decide what to do? Please dont judge me for considering options- i come from a religious family so already feel judged and I know I'll probably never be the same no matter what decision I make 💔

I'm going to preface this with I've made an appt with my obgyn for ppd today, it will be next Tuesday.

Baby boy was born May 5th and honestly he's fairly healthy which I am thankful for. No heart defects, his brain ultrasound came back normal after an abnormal shaped csp on his 20 week anatomy scan.

We are two weeks in and he has jaundice that required phototherapy for 3 days. In the two weeks since he's been born we have had to go get blood drawn 6x to check his jaundice levels, and his thyroid (thyroid is okay). We've had 3x pediatric appointments, abd the 3 days at the hospital. In the next two days I'm supposed to go get his blood drawn tomorrow, do a weight check Thursday morning and Thursday afternoon have a developmental appointment with the hospitals outpatient therapy. I'm so ridiculously overwhelmed by all of these appointments. We've had 3 days where we have been able to be home all day.

I'm losing my mind. I feel like all I do is try to feed him, pump milk, try to feed myself (making food seems impossible, my husband has been handling meals and our two other kids). I know he requires more care than the average baby but I am really starting to feel like I don't have this in me. I go back and forth in my mind that I am stronger than I know and just need to do what needs to be done and start getting outside in the sunshine more and get active to I should probably just give my baby up for adoption and let someone else who wants a baby do this. I'm not sure how serious I am about the latter thought but I did Google how adoption might affect my other children.

It's only been two weeks and maybe I just need to give it more time but it doesn't feel like there is an end in sight. Ans when I think about the fact that he will probably have to live with us his whole life I just start to cry. I know there is a grieving process of the life/ child you thought you would have. I read so many stories about how other children with down syndrome have enriched peoples lives, and how hard it is for others. None of it really makes me feel better.

I am a Christian and I am trying so hard to trust God's plan and not rely on my own understanding but the depression I feel is so deep. It might actually be left over some from my pregnancy 2 years ago. April 2025 my Dr suggested an antidepressant/ anti anxiety but I didn't pick up the prescription. I kept telling myself I'll mentally be stronger soon. And then we got pregnant again and I've been going downhill since. Throwing a baby with down syndrome at me broke me for a good few weeks there.

Idk what feedback I'm looking for, mostly just needed to write out how insane all the doctor appointments feel and that I'm drowning. We don't have any support system around here but I have come across a ds connection place here in town that helps with resources and what not. I've reached out to a woman who has a kid with DS and chat with her back in February and will be meeting with her again this Thursday. I just feel... Messed up. Super mentally not okay. Tell me there's an end in sight. How many people take Zolof (sp?) or the generic version of it, did it change your life?

My spouse and I have twin one year old boys - one with DS and one without. I love our life. The first two weeks or so after finding out that our son would have DS were so so hard. I honestly blocked out a lot of it. But after that initial period, life has been awesome. We had a NICU stay that really took it out of me. But honestly, we came out pretty unscathed and our son is pretty darn healthy. Just a few minor things such as a cardiac condition to watch and a gtube. Most of the time I don’t really even “notice” the DS anymore. To me, he feels just like our other son. They are two individuals. But I still find myself plagued with anxiety probably once or twice a week, usually at night before bed, about the future. I am so saddened by the thought of dementia. In a way I feel such guilt. I don’t want this for my son. It feels so cruel. Does anyone else relate? Has anyone found a way to constructively move through the feelings of fear and sadness?

Pregnant with a DS baby and wondering how other families (especially in the US) manage childcare and work arrangements (especially for when the baby is age 0-5). My husband and I currently work full-time; he earns the higher wage, but I have the superior benefits so it will likely make more sense for him to reduce his work hours than for me to do so, or to leave the workforce. My job is also fully remote. We are technically middle class, but live in a city with a high cost of living and are doing just OK financially. We had plans to move somewhere with a lower cost of living, but will likely wait until our child is a bit older as our state has relatively good support for special needs children.

We are in our 40s and 50s, and our parents are out of state and also quite elderly. We don’t have siblings, other local family, or even local friends we can count on for childcare help.

Questions for the parents out there:

- How is childcare arranged for your DS child? What is a typical weekly schedule?

- If in a 2-income household, does one of you have to stay home or work reduced hours?

- What is your income/how has it changed since your DS child was born? How do you make finances work, given childcare and/or increased medical costs?

I realize the question of childcare is not unique to having a DS child; however I am more versed on the opportunities available with neurotypical infants/ toddlers (for instance neighborhood nanny shares, etc.) to manage the childcare (financial) burdens. I also realize we would likely be eligible for state support, but I wanted to hear from parents who have direct experience what the reality of childcare actually looks like.

Thank you for your insights!

Hello. I think this will be controversial but hear me out.. I have another post up right now about my 10 months old baby who is so whiny and complaining a lot, that I’m worried he might have autism since most parents of DS Babys/ children talk about them bringing so much joy..
I don’t know if there is something wrong with us as parents but we mostly see the hardship rather than joy. We love our boy, that is out of question! But… where is that intense joy ?
Our days are filled with hard work, for him as well as for us. We have physical and speech therapy but of course at home we do a lot too.
He does not have any extra medical issues as of right now. but still everything in my mind is about how I can promote better this, better that. I do compare a lot and I know I shouldn’t but all I see are the endless giggles of most baby’s without DS by like 5 months. The belly crawling, the sitting.. all before 6 months. All those things that make life easier for the baby (less frustration) but also for the parents! All I see is what we can’t do yet and that is of course my own problem but I can’t get out of my head :( I see :
- he doesn’t sit yet, I can’t even go food shopping comfortably with him cause I can’t put him in the cart
- doesn’t belly crawl/ crawl yet : he gets frustrated in tummy time because he wants to explore but can’t! That frustration turns into crying which of course frustrates me too because I wish I could have 10 minutes where he can just occupy himself with something..
-doesn’t have frequent deep belly laughs because it takes him more effort (muscle tone): he smiles more now but we still have to work for it and I wish I could get more ease and lightness into our days.
- doesn’t eat yet : we are still in the trying out solids phase and he hasn’t replaced a milk meal yet. This means constant breastfeeding and with that less freedom for me. I can’t leave him for more than 90mims/ 2 hours MAX. I see baby’s who eat at least one or two meals a day by now and mums who slowly get a little bit of life back…
- the breastfeeding: I do enjoy it too and don’t wanna stop but I also feel a lot of pressure that I SHOULDNT stop because it trains his jaw muscles etc and gives him antibodies which he can really use

.. I guess I just feel defeated and exhausted and lonely in these thoughts and of course shameful because everyone else is talking about the immense joy they feel for their kids and I’m out here thinking about how much „easier“ it could (potentially) be without Down syndrome.

Hello everyone,
I have a 9 week old daughter, 5 weeks adjusted. She is actually pretty chatty. Sometimes super expressive with raising her eyebrows and seems to get excited if I speak to her in a high pitched voice and sound excited. Early on she would stare at my mouth and start making o’s with her mouth to try to speak. She’s very alert. Very active. Tracks items super well, especially those high contrast toys lol. She will look in the direction of sound when she can hear (she’s got MAJOR fluid in her ears and can hardly hear in her right ear).

But Her eye contact is sometimes there but sometimes not. I’d say she’s more interested in her surroundings. And she’s never smiled. She will sometimes even stare at my mouth and then nothing. I will say she has slept a lot up until a few days ago she has way longer wake windows. Believe it or not she is my third but my first premie and of course she has DS so that’s also new lol.

So I was wondering, when did your baby smile?

Hey guys. We knew before birth that our son would have Down syndrome. He does not have any extra medical issues. So far his development is not bad (milestones like rolling, babbling etc) but here are some points that make me worry since every other parent we know with a child with Down syndrome can NOT relate. Btw we live in Germany. So here are the things that feel different, since no one else shares the experience :
- our baby is not a happy „sunshine“ baby ( I know that that is a cliché but why are we the only ones around us with a „not always happy“ child?). He complains a lot and is almost always whining. We always hear„our son/ daughter is so calm, such an easy baby“. I thought maybe it’s frustration because he wants more than he can do right now.. but idk.
-he sleeps very badly since the beginning. All our friends tell us „no no he’s such a good sleeper!“ and we deal with really bad nights and during the day he only sleeps when on the breast (I’m breastfeeding) or in the pram. We can’t even stop the pram, he needs the constant movement.
-he wants to be held a lot.
- he is very loud and vocal. I mean I love his babbling that started shortly before 9 months but mostly he’s doing these „ehhhhhhhhhhhh“ long sounds. Or he screeches. And there isn’t really a minute where he is just silent.
- we kinda have to work hard for him to really laugh. He will smile at us quite frequently but for real giggles we really have to put in work.
- he isn’t very social with other baby’s or his own reflection in the mirror, he doesn’t seem to care about that
- he is generally not very interested in anyone else but his parents for interaction. With us, he behaves differently than with others. I know that’s normal but he gets very quiet with others and sort of just „waiting“ to get back to us.. I hear that usually DS Babys are very interested in human interaction.
- he still isn’t eating even though he has enough strength and coordination for it. Brings everything to his mouth and explores it but doesn’t eat. We do a mix of blw and purées. He’ll eat a little bit of strawberry or a little bit of sweet potato but all I’m hearing around me is „oh he/ she is already a good eater“.

I KNOW that every baby is an individual. But these things feel a little off to me, what do you guys think ?

Apart from the things I worry about our son is very curious, he watches everything intently and he has a strong will. He is eager to learn new things, he’s trying very hard to move forward and is frustrated that his body doesn’t allow him that yet. His muscle tone is also not that bad according to doctors. Medically he seems to have sleep apnea but we’re in the process of finding that out. Maybe he’s just overtired from bad sleep and that’s why he’s complaining so much I don’t know. But I would still like to have feedback if you’re willing to share. I would be very thankful!
(This is our first child and we are naturally anxious people unfortunately).

Pregnant with DS baby and have a question about the different types of DS. I frequently read (mostly in Reddit and Threads comments and not corroborated elsewhere) that the “high-functioning” DS individuals (those who are highly verbal, athletic, graduate college, hold jobs, etc.) are the ones in the 1-2% minority who have Mosaic DS, while the overwhelming majority of individuals with DS have more significant physical and mental limitations.

I recognize a lot of ableism in those comments, and my aim here is not to assess the inherent value or desirability of people with different types of DS, but to be able to anticipate the intensity of care required. My question to parents and siblings of folks with DS: can you share a bit about the challenges and limitations your family member has? There is a diversity of presentations and I’m trying to learn more about this range to be better prepared.

Thank you!

Hello everyone.

I wanted to tell you that I’ve just had a positive test after a loss at 32 weeks due to an unbalanced 21:21 Robertsonian translocation causing Down syndrome. Two chromosomes were attached together and one was free, but it was still Down syndrome.

Now I’ve become pregnant on the very first cycle of trying again, after nine months, but I’m very, very scared that it could happen again and that this second pregnancy could also be affected and I might have to terminate it.

They will probably do an early amniocentesis, but of course… I’m frightened. I’m trying to stay positive, but it’s difficult.

I really need to hear similar stories that ended well afterward.

From everything I’ve read, the most common outcome is that subsequent pregnancies are genetically healthy, but I’m afraid I could have some kind of mosaicism and that it could happen again.

In the previous pregnancy, the Natera Panorama NIPT didn’t detect anything — it was a false negative. I’ve read that de novo cases of 21:21 Robertsonian translocation seem to be overrepresented among NIPT false negatives.

And both my husband’s and my karyotypes came back normal.

But that was our first pregnancy.

Now I got pregnant immediately again, although the first time it happened quickly too.

I would really love to read some positive experiences.

Thank you.

I’m a dad of a four year old with Down syndrome (current IEP) and two older kids with ADHD (one had an ISFP in the past).

I feel like every time we get close to a meeting, everything is scattered: notes in my phone, emails from teachers, random documents, stuff my wife remembers that I forgot.

Then we sit down in the meeting and I know there were things we meant to bring up… but they’re just gone. We got blind sided by questions too. Sometimes it feels like we are expected to lead, but at the same time when we give our thoughts we often get pushback.

I’m curious, how are you all actually keeping track of everything leading up to these meetings?

Is there something that’s working for you, or is everyone just kind of piecing it together like we are?

We have recently befriended a family whose youngest daughter has downs. She is four or five and non-verbal but knows some sign language.

How can we be good friends? What are things that we should/shouldn’t do or say? To both the kid and her parents?

She seems like a sweet, sassy girl and there will be a handful of kids of various ages playing together. I want to be a good friend and not ask or say all the wrong things or questions that they get a million times.

Thank you!

My husband and I recently received NIPT results that were positive for Trisomy 21. We have been up and down emotionally about this, but have come to a place of acceptance; we believe this experience will be both beautiful and very difficult.

We know people who have DS in real life and love them very much; we have no problem loving/valuing/accepting a child with DS. Since receiving the news, we have also done tremendous amounts of reading and research. This is where the information can get frustrating: on the one hand there are the online influencers who present an overly rosy picture of the experience, and on the other are online posts from people who resent/regret their DS child or sibling. It’s been hard to really see a truthful and balanced picture.

Additionally so many of the depictions of the experience that we’ve seen are of 1) affluent parents or 2) young parents. We are in our 40s and 50s. While we are both healthy and fit now, we cannot assume our health and stamina will remain this good in the years to come. One or both of us will likely pass on when the child is in her 30s… is it cruel to proceed with this pregnancy knowing that? We don’t really have loved ones that would be able to care for the child, and those who might are around our age so would not be around or fit for this task.

Additionally we are also not well off. Not technically poor, but we work very very hard and are doing just OK, though neither of us really have much retirement savings. If we had a special needs child and one of us had to leave our jobs or reduce our work hours, we would definitely be in financial trouble.

Given these circumstances, I don’t know if it would be kind or fair to our baby to proceed with this pregnancy. I would love to hear the perspective of others who have more insight into raising a child with DS, or who may also be in our specific circumstances with respect to being older parents or financially precarious.

Thank you!

My neighbours have a daughter with Down syndrome, she is 19 years old now. We are both pretty much involved in STEM. It are my favourite subjects, she doesn’t study it but she has a few posters of math and physics stuff and gets fascinated by looking at it.

Yesterday she asked me if I think she could have a career as a scientist. I don’t mean to come across as ableist, but because of her disability it’s not possible. I told her I’d have to think about it because I don’t know how things like that work. However my answer was already no, I just didn’t know how to bring it because I don’t want her to stop having fun by exploring it all.

I want to be honest, how can I bring this without hurting her feelings?

Next summer I'll be a group leader on a 4-day children's summer camp. The camp leader just informed me that in my group there will be a 10-year old girl with down syndrome. I have some basic knowledge about DS but I wanna learn more so I can do my best with her. Do you have any advice or resources I could check out?

I've been asked this a few times. I did know and today I told someone that yes I knew at 12 weeks but I don't consider 3 months early.

I feel it is intrusive and sometimes feel it comes with an agenda, they are wanting to know so they can work it all out or that person is surprised that I continued on. I'm in Australia where they abortion rate of babies with a prenatal diagnosis with DS is over 90%.

What do you all say? I've been thinking I may say next, "yes but what do you do with that information?" To probe the person to think a bit more and back off with their question.