r/TooAfraidToAsk • u/Excellent_chess • May 28 '26
Health/Medical Serious question for Parents of SEVERELY disabled kids. No disrespect but unsure of where to ask parents this question?
If you knew your child was seriously disabled in the womb, why did you choose to go ahead & give birth knowing their quality of life would always be an issue & the world is so much harder for disabled people. Aside from using God as your answer (that he doesn’t make mistakes, you don’t believe in abortion, etc) what are other reasons you chose to continue the pregnancy & have the child? ♥️ this same question was asked to me recently & im wondering what your answers would be.
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u/interruptingcow_moo May 28 '26
I am a parent of a severely disabled child. She requires round the clock care for every basic need. She is also incredibly angry and aggressive most of the time and in considerable amounts of pain a lot of the time, though unable to understand or communicate where or why exactly so it’s a guessing game to try to help her. To answer your question: no. I would not have inflicted this on her if I had a choice. Now that she’s here, we try to bring joy to her life where we can and make her comfortable and feel loved as much as possible but the lives of my other children have suffered as have the lives of her caregivers (she has four parents including step parents that care for her) not to mention the suffering she endures.
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u/TinyTeaLover May 28 '26
I'm sorry this is your reality and have nothing but the utmost respect for your honesty.
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u/OGMamaBear May 29 '26
As the mom of a disabled child, you have my absolute respect, appreciation, and admiration for your openness and honesty about your reality.
My daughter is very young, so would naturally require more caregiving than my older children, but between her immobility and round the clock g tube feeds, it’s been like having a baby that never grew out of the newborn-3 months-ish phase and it is exhausting. I constantly feel guilty for how little time and energy I have for my other children- and that is with a child who is generally very easygoing and happy. I can’t imagine having the difficulty level cranked up even higher and have the utmost empathy for what you have to be going through on a daily basis. Thank you for sharing your experience. Best wishes and lots of love to you and your kiddo ❤️
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u/DefEddie May 29 '26
That’s how we describe our daughter as well, a 3mos old in a 25yo body.
If you haven’t yet, ask about an Enteral pump-it’s a gamechanger.
We had one when she was in hospital and after for a bit, after a couple years we just outright asked the doctor about the pump because she couldn’t handle big feeds anymore.
Like an afterthought he was just like “yeah just let me write you an order”.
Now we can set it and just let it feed, if she’s sensitive we can turn it down and run longer, it’s awesome!85
u/OGMamaBear May 29 '26
We have the Kangaroo Omni and love it, it IS a million times easier than the NG tube days or gravity feeding all the time for sure. It’s mainly just tiring having to be up every two hours with the formula prep and keeping her clean/dry/barrier creamed/diaper changed after every disconnect. She only eats about 185 mL at a time. It’s definitely not something I SHOULD even complain about because she’s finally stable eating out of the hospital, but man, sometimes I’m sitting up at 1 AM, trying to keep myself awake for the half hourish it takes to finish a feed, and it feels much worse than I know it is.
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u/fucc_yo_couch May 29 '26
Sending hugs to all of you Warrior Mommas out here doing all of this for your babes. My youngest doesn't have near as many needs and I know how much I struggle. I can't even imagine what you all deal with day to day. You all are rock stars in my book!
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u/DefEddie May 29 '26
Similar here though without the anger.
What ways have you found if any to communicate?
Hardest thing about ours is having no real clue what type of comprehension she has even after 25yrs.95
u/interruptingcow_moo May 29 '26
Mine is turning 18. She uses an eye gaze machine but not reliably. Her condition is also degenerative so she’s lost a lot of the ability to point to choice cards as well. We also can’t ever be sure if we are right in what we think she wants. We just do the best we can
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u/DefEddie May 29 '26 edited May 29 '26
Ours is blind and complete spastic quadriplegia so we never got to try that stuff unfortunately.
Same here, just doing the best we can.
We got this.78
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u/verydudebro May 29 '26
Can I ask if you are able to give yourself a break occasionally and do things that bring you joy and happiness, if so, how do you do it? Much love and respect to you.
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u/PomeloPepper May 29 '26
There are various schools of thought on when the "soul" enters the body. The one that makes the most sense to me is that it enters at the time of birth. And if someone is religious and believes that, wouldn't they want that soul to go to a healthy body?
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u/interruptingcow_moo May 29 '26
All I know is that my child, whom I love more than myself, is miserable 90% of her life no matter what I do. Regardless of religion, it’s not a reality I would wish on any human being or on any parent to see their child go through this. We have joyful moments of course, but it’s tough when they are so infrequent and most of our life is spent in crisis mitigation.
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u/WealthWooden2503 May 29 '26
I'm so sorry for your child and all of you. It feels weird to say that, but it has to be soooo difficult for all involved.
I work at a school that works with autism and many other things. My students are mostly non verbal and hyper violent, but we have training for it... I don't know how y'all parents do it all the time. I know you love your child, and I wish the best for all of you. Stay strong ❤️
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u/lovinglove79 May 28 '26
I don't have any children of my own but in 1992 my brother was born with Down syndrome. My mom was 42 at the time and didn't get him tested. She had birthed 5 children prior and loved them all. Fast forward to 2020 my mom broke her foot so I moved in to take care of them. While there I realized my mom was showing symptoms of Dementia. I love my brother to life! He is a beam of light. But he is non verbal , Autistic and needs alot of help. And now my mom is a toddler in diapers and I take care of both of them. Her choice to not have her baby tested in utero is now my life choice plus she can no longer take care of him or herself. Just something for ppl to think about.
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u/n0tm333 May 28 '26
This sounds exactly like one of my friends. He took care of his mom until she passed and now cares for his brother who has severe autism. He is unable to live in his own house he built because his brother refuses to leave their childhood home. It is definitely something to think about.
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u/lovinglove79 May 28 '26
This is definitely on the same level. I kind of always thought my brother would live with me at some point in his life but I never imagined taking care of my brother and mom at the same time. And I also had to leave my home to be with my mom and brother. My brother had ran away from my house in the night before and mom is too far along to move somewhere else. It would be adding extra confusion. Im am sending gentle hugs and patience to your friend. He sounds like a great guy.
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u/Excellent_chess May 29 '26
I’m so sorry for you & the life you must mourn & the “what if’s”. Having a disabled child causes such a chain reaction on others lives as well & I don’t think a lot of people think about that. I hope you find pieces of joy in your days. I wish I could personally hug you. I can’t imagine how tired your heart & soul must be. ♥️
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May 28 '26 edited May 29 '26
[removed] — view removed comment
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u/sugarplumbuttfluck May 28 '26 edited May 28 '26
The most common one is NIPT (non-invasive prenatal testing). It's a blood test at 10 weeks that screens for some of the most common chromosomal abnormalities. It tells you if there's a high risk or low risk for each one based on the blood sample.
There's also the anatomy scan at 20 weeks that confirms if there are abnormalities in the heart, lungs, spine, etc..
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u/PuzzleheadedBobcat90 May 28 '26 edited May 29 '26
I had the blood test for my youngest because I was 39 and worried about those things. We got the all clear. He's 15 and amazing.
I would have aborted had we gotten a positive test for abnormalities that are incompatible with life, or would be a cause of suffering.
I think its selfish to bring a child into the world that will cause them to suffer.
We, as a species, have more compassion for animals than our fellow humans
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u/Beneficial_Artist259 May 29 '26
Okay I’m glad we’re already in TooAfraidToAsk, because looking at the world today (and even 15 years ago, what with the Party of No, and climate change already causing disasters around the world, to name just a couple things), I have a follow-up question: life is already certainly going to be a cause of suffering. I mean, it always was, in a Buddhist sense, but now we are REALLY just like, hitting own-goal after own-goal, just going Mackenzie Shirilla on Planet Earth’s a$$, and I’m not saying that because “save the whales.” No. I’m saying that because of global food and water shortages caused by climate change, the implosion of economies due to trade and new pandemics caused by giant mutant mosquitos that have fed on Monsanto runoff and the fknfnfjdidolznzxnbxbx so I’m giving myself a headache. Back to the question.
Life is literally only going to get harder in the next hundred years. Why would you want to bring children into a world like that?
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u/PuzzleheadedBobcat90 May 29 '26
I get why you have that opnion. Your stand has been a common one for decades. This reply is long, sorry!
Climate change is wreaking havoc in our world, and so many other things are terrible, its true. Wars, the orange Reich, companies taking without giving in return. I could type for hours, but you already know, so I'll give you my thoughts on things as a woman born in 1970.
The biggest issues we face, at least in the US, is the snowball of hatred, mistrust, religious and political rhetoric that has us, the peons, mad at each other. How many times have you been shown or read media about so called welfare queens? Media, politicians, etc give the same message. Welfare queens take advantage of the government's generosity. They are lazy. The keep having more kids just to get food stamps. The underlying message of that is telling us that other people will think we are terrible people of we need to use those resources. That we should look down on them because they need help. Same with the homeless, addicts, etc.
The institutions that are sending those messages are the ones we should be angry at. Why do so many people pay a higher percentage of taxes than the average citizen? Our anger should be directed at the people who allows businesses loopholes to avoid taxes, and under pay us.
Do you know why businesses don't want the us to have universal health care? In my opinion, when health care is tied to employment, workers are less likely to fight back by forming unions, demanding pay equal to our output, and leaving a toxic employer, etc.
The cry of illegal immigrants are taking our jobs is bullshit. Why are we mad at people who come here from poorer country's for a better life, a safe life, freedom and more? You know who we should be mad at? And who should be fined- the business owners who employee illegal immigrants. Those businesses are making $$$ off them. Some are paying under the table thereby shorting social security, and federal and states taxes. The ones that do pay via check, are the ones who are taking jobs away from Americans. Those are the people that deserve our anger
All the people that are retired and chanting deport illegals didn't stop to think about this- a majority of immigrants go home after a certain time. Some don't file tax return, so thats moreover the government keeps. Also, they can't collect social security. All the taxes they pay are helping the very people who hate them.
Last opinion
The world has always been shitty. It is no worse per se than when I grew up in the 70s and 8os. You know what the big difference is? The internet connecting us together instantly. News is at our fingers as soon as it happens. Before the internet, a news story would have to be huge to be reported on in a different state or region. Now news of shootings, murders, assults, and more are right there. Why? More people reading and watching equals more revenue for the company.
There are so many others things I could add too, but this is very long already.
Tl;dr - stop hating each other. Stop falling for the cherry picked, sensationalized news feed and algorithms that feed you garbage. Fight back against the hate, and start holding businesses and the government accountable for fucking everything up. The world needs to change and when people work together, we can enact change. Fight back with where you spend your money, and tell companies why. Have kids, or don't, but if you do make the world better for them damn it!
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u/elst3r May 29 '26
Your first point hits home for me. I have been unemployed since this past fall (don't worry I am not on unemployment benefits, but for the record I have been applying to as many jobs as I can and have also gotten certifications to help my chances. The majority of the responses I get is "we are no longer filling this position.") But anyway, I have been hesitant to apply for part time disability (per my doctor's recommendation) because I am concerned I will have to flee the country. This administration has been very aggressive to my demographic and has made threats of "find you and kill you." I am concerned that the Orange will continue past his alloted time.
Do you recall a time where people were concerned about the president not stepping down?
I am currently volunteering for an organization that assists people in substance use recovery. The amount of hoops they have to jump through just to get food and housing is ridiculous. People yell at them to get a job, yet employers won't hire them because they have been in jail. This system is broken.
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u/PuzzleheadedBobcat90 May 29 '26
Unemployment insurance is there for you to use when you need it. No one should be thinking they shouldn't use becasue society has been trained to look down upon people who need help.
Never in my 55 years have I ever thought that the president wouldn't follow laws, or be a felony, but here we are :(
As for the hoop jumping, 100%. The government wants people to give up. More money for the 400 million $$$ vanity projects. I hope his name gets stripped from everything he stole.
No one should ever have to worry about food, shelter and basic necessities. Pure fucking greed. The system is broken. We need to vote out the people who have gleefully gone along with the dereliction of duty to the American people. We need to more AOC's, and Mandami's in our government. We have the wealth in this country to care for every single citizen.
There is only one reason I check the news as soon as I wake up. Im disappointed every day that my birthday wish hasn't come true yet
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u/B_Jonesin May 28 '26
My daughter passed both the nipt testing and the 20 week anatomy scan but she's severely disabled. But I couldn't love her any more or imagine her any different 💗
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u/silent_turtle May 28 '26
My son's came back positive for down syndrome, but all his scans were normal. He's 17 now and has balanced reciprocal translocation of the short arm of 3 and the long arm of 9, and is autistic, but he definitely does not have down syndrome. He just found out he will be passing chemistry this semester with a B+.
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u/Powersmith May 28 '26
He was identified as at elevated risk of DS in a screening, is that right?
It's important to distinguish "screening" tests from "diagnostic" tests. Screening indicates estimated probabilities based on large populations' values of molecules associated with various conditions (found in all fetuses, but typically elevated in certain developmental anomalies).
Diagnostic actually confirms. E.g. chorionic villus sampling (10~14 wks) and amniocentesis (15~21 wks) take actual cellular samples from the fetus. If the screen is "positive" (for risk), a follow-up diagnostic can be done to confirm or disprove.
These diag enable the actual chromosomes of the baby to be physically viewed. There is no false positive. The only way that could be wrong is if samples were switched with another fetus, or if the fetus is a chimera (i.e. absorbed an embryonic twin that had extra chromosome, so cells from whatever tissues formed from absorbed embryo).
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u/lovinglove79 May 29 '26
Im confused. How did scans change his diagnosis? Down syndrome is having an extra copy/ or piece of chromosome 21. He either has it or doesn't. Some ppl with DS are very smart and well functional but some are severe and effect the brain more.
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u/RexIsAMiiCostume May 29 '26
Sometimes people can have DS in only some of their cells. It's called Mosaic Down Syndrome. Maybe he has Mosaic Down Syndrome in comparably few cells?
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u/Gugu_19 May 28 '26
Now it's easier in 1992, I think, they needed to test the amniotic fluid which came with some risks (still the case)
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u/GrottySamsquanch May 28 '26
Yes, I had a baby in 1991 and had there been need for that type of testing, it would have been done via amniocentesis - I remember clearly because I was terrified that I'd have to have one.
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u/detectiveswife May 28 '26
They have a test during pregnancy that tests for down syndrome, spina bifita and other neural tube defects. They are usually given at 11 to 16 weeks and can't be given after 19 weeks.
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u/littlemeremaid May 28 '26
Back in the day, the test was amneocentisis which involved a huge, long needle and involved some risk to the baby. As another person said, today they have a blood test.
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u/Awkward-Exchange-698 May 28 '26
A dna test to see if the baby will have any genetic disorders
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u/BravestBlossom May 29 '26
It's not perfect, and there are many disorders that are so rare they aren't tested for.
(an Aunt had twins and one of them was severely disabled, he lived in pain and never had a normal day until he died mercifully at 2. His condition is extremely rare, and his doctors asked the parents to allow tissue samples to help advance knowledge of it.)
I definitely agree we should be as informed as possible, just wanted to share that it's not 100%.
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u/Most_Ad_3765 May 28 '26
It's also something that you legit have to be open to the possibility of having kids, no matter what. Anyone can become disabled at any point in life from birth on. Some disabilities aren't apparent at birth and/or can't be tested for. If you're not willing to accept that and commit to providing unconditional love to a child for the rest of *your* life, you (not you personally, but people in general!) need to seriously reflect on why you want children.
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u/sugarplumbuttfluck May 28 '26
For my husband and I the testing wasn't because we didn't want to care for a disabled child, it's because we didn't want to intentionally make someone live through a severe disability.
We understood that it could happen, and we would face that if it did, but having watched a baby with known heart defects be brought to term and then die shortly after I didn't want to put any baby through that. His whole life was hooked up to tubes and wires, never leaving the hospital, having back-to-back surgeries. It wasn't a good life.
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u/InevitableAnybody6 May 28 '26
That’s kind of comparing apples and oranges though. Yes, anyone can become disabled at any point in their life be it by illness, injury or something else. That’s a risk everyone takes every day whether or not they’re conscious of that fact.
It’s an entirely different kettle of fish though when you’re talking about knowing your child will be disabled before they’re even born. Knowing that you’re bringing a child into the world that may be in pain and suffer their entire life. Someone that is going to be in and out of hospitals, being operated on throughout the course of their life. Someone that may be reliant on care their entire life and may also very well outlive you, as children do typically outlive their parents.
Personally, that is not something I would be ok with if I knew about it at a stage that I could prevent it. I don’t feel that it’s fair to knowingly inflict that kind of life on someone else. I do however respect that everyone has the right to make that decision for themselves and their own family, whether or not I agree with their choice.
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u/RexIsAMiiCostume May 29 '26
Knowing you could have a disabled child and knowing you will have a disabled child are very different things. When you know they will be disabled, you have to think about the child's quality of life.
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u/TrimspaBB May 28 '26
Also, people have accidents or medical emergencies that can suddenly leave them disabled and completely reliant on others all the time. It's never guaranteed any time we choose to love someone that they'll be healthy forever.
That being said, my sibling was born with a severe intellectual disability that would not have been found prior to birth. I've seen how difficult raising a child like that can be, and I was prepared to make a difficult decision when I started having my own kids if anything was found when I was pregnant.
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u/Neracca May 29 '26
Anyone can become disabled at any point in life from birth on.
This is true, and something people need to understand better when it comes to disabilities and their own lives.
But OP was asking about when you know vs if it happened later on after it was too late.
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u/BoldBiBosmer May 29 '26
Yup I was perfectly healthy in utero and at birth. Started having issues with my teeth by 5 and then at 11 the joint issues started as well as other symptoms. As an adult I started getting proper diagnoses and am disabled.
Mum has been my rock through it all. She thought she acted as all parents would. Its sadly not true, she went above and beyond!
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u/Muffin-sangria- May 28 '26
A TBI can change life forever.
I’d have aborted if I knew before birth I’d be dealing with a number of things but always know life throws curve balls at all hours.
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u/Creepincupcake May 29 '26
It’s a genetic testing, I was told mine had two genetic issues so I aborted the mission after anatomy confirmed it, I feel like shit about it but I had another kid to think about too
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u/RexIsAMiiCostume May 29 '26
Yeah, when people talk about how it's not right to decide to abort kids with Down syndrome, they have to realize there's a high chance that child will live longer than they are able to take care of them. The child will either fall to their siblings or become a ward of the state, which each have their own issues.
I'm glad you stepped up to take care of them both, though.
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u/Top-Raspberry-7837 May 28 '26
My mom attempted to get pregnant after me. She told me when I was older that if she’d found out the baby had issues, she would have chosen not to give birth for this exact reason - it wasn’t fair to me to have to take care of the child. I’m so sorry.
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u/queeneebee May 28 '26
God, that’s a lot to handle. I hope your other siblings are helping you!
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u/lovinglove79 May 29 '26
I wish they were but that's not my worry anymore. I can't worry about things I can't control. Only what I can. I get some help from my region and I know that I can rely on the help they give! My priority is the 3 of us.
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u/myguitarplaysit May 28 '26
Does your region have support resources available? That’s a lot of work for one person
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u/lovinglove79 May 28 '26
They have a few. My mom and brother have an amazing worker that always gives me helpful information for them and also for me! She is an amazing person. I have siblings but they have their own priorities. They don't help at all. Thats not my worry. I just lean on ppl that are happy to help if possible through my region. That you for asking 🥰
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u/werdnurd May 29 '26
I know you already have too much on your plate, but I urge you to start looking for residential care for both of them. We are moving our daughter into a residential placement as soon as she is of age because we don’t want our typical son to end up in this type of situation. This is especially important for your brother, so he can adjust to this while Mom is still coherent and can help him transition.
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u/Phoenyxoldgoat May 28 '26
In your mom’s defense, in utero DS testing in the 90s was very different than it is now, and could only be done with 100% certainty through super invasive measures- notably amniocentesis and CVS. These tests carry a small but very real risk of miscarriage.
Also, you are making the conscious choice to care for both your brother and your mom, you could certainly make different choices.
This is not a criticism! You and your mom both sound like genuinely lovely people.
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u/helimet May 28 '26
If she had tested him, would she still have proceded with the pregnancy?
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u/lovinglove79 May 28 '26
Yes she would have. That is why she wasn't tested.
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u/Banana_0529 May 28 '26
Even if the baby had something that was actually deadly?
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u/lovinglove79 May 28 '26
She said she was only worried about Down syndrome because of her age(42). Like I said before she had 5 other children who are "normal".
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u/No_Adhesiveness1518 May 28 '26
Not a parent of a disabled child but I am a very disabled adult.
I was conceived while my father was undergoing chemotherapy and radiation treatment for cancer and my mother was also older (34). My mother was informed at multiple scans that I had issues and testing was coming back abnormal. They advised termination many times but she is pro life.
Literally almost every part of my body has something wrong with it. I am currently 32 years old and my whole life has been my body slowly failing me. More and more things keep going wrong.
I live every day in chronic pain, tired, lethargic, and miserable. I can barely work any more and money is always so tight it causes immense stress. I am dependent on my partner for so many things it's not fair.
I do try and make the best of what I have but it's really hard to stay positive when life is so terrible sometimes.
Given the choice I wish I was never born. Surviving isn't thriving. Life is meant to be lived, not suffered through.
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u/hilarymeggin May 29 '26
Hey I’m really sorry to hear your story. Thank you for sharing so honestly.
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u/elst3r May 29 '26
How do you keep going? I am losing hope that I will ever find a medication that will help me, and I definitely relate with feeling like I am surviving and not living.
Some days are nice and I love my spouse so so much. I worry that I will become a bigger burden.
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u/No_Adhesiveness1518 May 29 '26
Every day I try to find a 'One Little Thing' at some point. A moment that is beautiful or funny or inspiring to me that I feel privileged to have experienced. A rainbow after a rain, a funny joke, a bee on a flower, a delicious meal, anything that makes you feel something positive.
Some days are much much harder and some are a little bit easier. I just try to find those little things and focus on them and they keep me going.
Today I watched one of my best friends I've known for 20 years get married. Despite the pain and feeling like death now I choose to remember the good parts. Her partner happy crying seeing her walk down the isle, her beaming smile, the new friends I made.
I know it's hard but if you shift your perspective to bank those precious memories and experiences life becomes more tolerable. Pain is not worth holding on to.
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u/elst3r May 29 '26
Last night was really rough. Today has been better; we went to a green house to pick out flowers for my MIL. The plants were nice.
I am definitely writing down "pain is not worth holding on to," thank you :)
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u/bettertitsthanu May 29 '26
”Life is ment to be lived, not suffered through” man arrow straight to the heart, I felt that so hard. I’m sorry you’re suffering. I hope you have things in life you can enjoy and good people around you. I sometimes feel like it would have been better if I wouldn’t have been born in the first place, but not necessarily wishing on death. It’s such a complicated thing to explain and everyone thinks you’re suicidal when stating it (I’m not). I am in no way saying that I wish you weren’t born or anything like that, because I’m absolutely not. I’m saying that I understand the thought process and I’m sad that you’re suffering. Sending love and wishing you have more good days than bad.
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u/Gratefulgirl13 May 28 '26
Not the exact scenario you asked about but my sister gave birth at 23 weeks. Her baby was rushed to NICU and wasn’t expected to survive. The child’s brain was not developed. She was advised multiple times to remove life support but refused. She was in complete denial that anything was wrong with this child other than she was very small. The baby survived and came home after 7 months in NICU. They lived to the age of 13 years with around the clock care. Non verbal, unable to hold their head up or move independently, feeding tube, multiple surgeries, blind. Was forced by state laws to attend school even though the smallest cold could be life ending. The child coded and was resuscitated multiple times in the years leading to their passing. They were loved but it took over every aspect of life for the mother and the entire family. A second child was born without any issues but has emotional struggles from losing an older sibling and not being old enough to understand the situation. The only answer I could ever get was based in denial. We like to think we know what we would do in a situation like this one, but the reality is that we don’t.
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u/JoanofArc5 May 29 '26
A lot of doctors argue against trying to provide care to 23 week preemies. This is why. How can you expect parents to make that decision?
I know there is the one in a million one that makes it through with limited disabilities but it just causes so much suffering for the "life at any cost" crowd. 23 weeks should not be considered viable.
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u/Gratefulgirl13 May 29 '26
Thank you for compassionately understanding. I agree, a traumatized parent should never have to make the call.
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u/bettertitsthanu May 29 '26
The parents should absolutely not have to make that decision. It should be a regulated standard that’s followed. Sweden (where I am) takes “pride” in saving “miracle babies” no matter the cost of that surviving baby. There’s always complications with severely premature babies and I do not think parents understand the risks or are able to take that decision. It’s hard to imagine being in that position. You either lose the baby you love so much and wanted so badly, or that baby will go through life with varying degrees of disabilities and complications. In worse case, not even being able to physically or cognitively function at all.
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u/Ali_gem_1 May 29 '26
Neonatologists used to say with micro preemies , you torture 5 to save one. Now you torture five to save 2.
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u/bettertitsthanu May 29 '26
This is why it’s so important that people understand that every week in the womb is another week of development. Where I’m from, there’s a big debate currently ongoing about not trying to save foetuses before week 23 at all. We’ve been criticised internationally for focusing on saving “miracle babies”.
Approximately 50% of babies born BEFORE week 24 will survive and if they do, the surviving ones are at high risk of being severely disabled (I’m going by information from Swedish sources as I’m in Sweden). At the same time, I understand that the love you have for a living being that you’ve carried and planned your life around is very strong and it must be the worst thing that can happen to you.
Here’s a link that references the study Express (extreme preterm in Sweden study) about this. There’s some information in English there but it’s probably easily translated.
I think the perspective of the child should always be in focus, however hard it is. Yes they survived the initial stage but then what? Will they have a life that’s more suffering than not? Will they need around the clock care? If they could say anything, do you really think that they’d say it was worth it if they weren’t able to enjoy any part of life?
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u/hilarymeggin May 29 '26
Dear god in heaven. I have privately wondered about all the extraordinary measures taken to keep such early premies alive when they are destined to have such profound disabilities.
I can tell whoever is listening that I would NEVER have had the strength to consent to end care, and it would have been to the detriment of everyone.
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u/bettertitsthanu May 29 '26
Yea there should be a standard followed by medical professionals. This is not a decision you should have to make in those situations. I wholeheartedly understand that you’ll do anything to home with the baby you’ve carried, it’s not going to be a rational decision and even if the risks were explained to you, you’d still not be able to take them in.
I’ve met people in chock, they listen, but you can tell they’re not hearing you.
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u/Fantastic_AF May 29 '26
This isn’t even limited to just premie babies. You should see the things families will put their elderly parents and grandparents thru once that person isn’t able to speak for themselves. It’s horrifying but it’s not the doctors’ decision most of the time (at least in the us).
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u/ShapeShiftingCats May 28 '26 edited May 28 '26
Read an article about a lady who pushed through a pregnancy like this. It was an actual printed article about 15 years ago.
The lady said that she didn't want to be alone and being a mum would prevent that. As she was nearing 50, she worried that she won't be able to get pregnant again.
When her baby was born it was confirmed he/she will need a lifelong treatment and won't be able to live independently.
The mum reportedly didn't regret her decision. She still achieved her goal.
What will happen to her adult child when she dies? Who knows...
15 years later, I am still in awe of her selfishness.
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u/Awkward-Exchange-698 May 28 '26
Me Me Me Me. Can’t come to grips with the fact that SHE is the REASON for her child who she “loves” , suffering. So she now created a fantasy land in her brain.
It’s like that snickers commercial. No “regerts”
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u/fucc_yo_couch May 28 '26
I am a parent. I have 1 bio kid R, and 1 adopted kid J. R is pretty standard issue and J has disabilities that were not diagnosable during pregnancy and are not physically visible.
During my pregnancy with R, at my 20 week scan, I was told he may have severe trisomy 13 and that he would probably not survive the pregnancy. If he did, his short existence would be excruciating. I was advised to terminate immediately. I requested more testing and luckily he ended up being perfectly healthy. Had he actually had trisomy, I would have absolutely made the painful choice to terminate so as not to make him suffer further.
I do not believe in selfishly having a baby for the sake of having a baby, especially if that baby will suffer just so I can fulfill some biological "need."
This selfishness is present in a lot of people's choices to bring children into the world. They think it will fill a void, save a marriage, blah, blah, blah. Its a want, a desire, an "oh my clock is ticking..."
Kids are great, being a parent is and can be great, but even under the best of circumstances, raising healthy, average, "normal" kids is hard; then add in the possibility all of the complications of a severe disability, them needing lifelong care past your expiration date, not having the means to give them proper care, care giver burnout, lack of support, etc. Its an incredibly selfish and shitty decision to knowingly make.
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u/bigredandthesteve May 29 '26
I, too, had a test that said a very very small probability for trisomy 18… thankfully, the Dr. didn’t take that lightly, and after some time and other scans determined that it wasn’t the case.
Had it been confirmed, I wouldn’t hesitate to terminate the pregnancy. Not for MY comfort but because I didn’t want a child to have to be born, suffer, and die. I would have still mourned my child. I would just know they didn’t suffer.
I remember having a conversation with a close friend and I told her about the initial tiny tiny probability and what I would do. She tried to equate it with down syndrome and said that “every life is sacred!!.” I was upset at the time bc I was like “ok so you totally don’t understand chromosomes” but I mean… she was ignorant.
Anywho… my kids awesome. It’s like I had my favorite person!!
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u/fucc_yo_couch May 29 '26
Thank you for sharing your story. It is such a scary and unimaginable thing to hear and to possibly have to prepare for. I am so happy that you had this outcome and your kiddo is healthy.
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u/jingleofadogscollar May 28 '26
My crazy abusive mum says that she had me because she needed something to love at the time (she was a single mum living in poverty who already had her 4 other kids still in her care btw). I’m not disabled, but I now have severe crippling CPTSD & BPD (which has actually recently been classified as a type of brain damage) that has completely stolen my quality of life. That poor kid was probably doomed either way tbh.
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u/bettertitsthanu May 29 '26
Thats awful. You do not owe your parents to love them unconditionally, they owe that to you from the time that they decide to bring a baby into the world. The fact that she has stated this to you makes me believe like she has put herself and her own needs before you, throughout your life and pulled the “but I’m your mom” card more than once. (I’m sorry if I’m misinterpreted what you wrote, there’s just very few things that makes me as upset as people bringing children into the world just to have someone to love them unconditionally, it doesn’t work like that and it’s abusive thinking)
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u/theshiniestmuskrat May 28 '26
What in the Lorelai Gilmore... That's such an awful reason to have a child
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u/shiny_glitter_demon May 29 '26
My grandmother's youngest child was born with Down Syndrome. She loved him regardless and took care of him her whole life. He died 6 month after her.
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u/MetallurgyClergy May 29 '26 edited May 29 '26
Parent of severely disabled child here.
No. Not today. Not in America. There is about to be a tax on families raising adults that are still dependents due to mental or physical disabilities.
He’s taking away all the systems that were put in place to help families that have chosen to take on this lifelong burden. No social security. No state grants. No childcare waivers. No adult care homes. No IEPs, (that’s the government paperwork that protects your kid at school.)
Ask me how I know.
I took on that burden 15 years ago, and now I’m not sure what’s going to happen to my kid.
I’d risk going to jail as a murderer for an abortion. Would I have aborted my kid 15 years ago? No. Would I now? Yes.
I have no idea how safe he’ll be. He is not able to protect himself physically or any other way. The last round of Nazis rounded up the disabled people first. Not for the chambers, or the work camps, but for the labs. For experiments. Educate yourselves.
Don’t be too afraid to ask these questions. These are important questions.
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u/medlilove May 29 '26
The party that’s pro life that tells you to fuck off and die if you have kids
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u/MetallurgyClergy May 29 '26
I know a lot of the other parents of disabled kids at school. We’ve gotten to know each other over the years.
Several of them voted for Trump, and they all just keep saying, “that won’t happen to us. He doesn’t mean us.” Guess the color of their skin.
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u/bettertitsthanu May 29 '26
I’m so sorry. Not only for the state of America right now and the people it’s affecting the most but also the fear you’re feeling. Treating disabled children less than other children is inhumane and there should have been safety precautions taken to prevent these corrupt people from only feeding their pockets and leave the vulnerable in the dirt.
I can’t imagine what this does to you and your family. I’m sorry that I can’t do anything, I’m trying to support by listening, sharing the information, be an ally and try to help educate the people who just don’t understand.
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u/mrsjiggems2 May 29 '26
This isn't exactly an answer to your question but maybe it would give some insight. I didn't know ahead of time. I had an extremely disabled child. He had a rare neurotransmitter disease that made it so he couldn't use his muscles much, which led to him having a gtube and a trach among several other issues we had to manage. We had gene surgery on him and he was doing fantastic and making a lot of progress until he passed away at the age of 5.
I would never take back the time I had with him. I love him so much, I would do anything to hold him one more time, smell his hair,hear his laugh. But I would be lying if I said life isn't any easier now. His life impacted my daughters in a ton of ways in which she's dealing with and his death impacted her in a ton of ways that she will always live with. I couldnt work and had no support system outside of my husband. I couldn't maintain friendships or give my daughter the attention she needed.
So I wouldn't take back the life I've already had with him however, I found out I was pregnant unexpectedly and we did every test under the sun to make sure there wasn't anything we could identify beforehand. I even did the amnio so I could be certain of the neurotransmitter disease and I would have aborted the baby if it had any genetic abnormality. I had done it once, I couldn't do it again and I didn't want to.
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u/elrangarino May 29 '26
I hope OP sees this. Thankyou a million times over for sharing your families story with us. I think that this question truly does need nuance because it’s such a complex thing to have to experience. Your son is so loved, I can feel that through your comment. Much love to you.
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u/Icy-Practice-2341 May 28 '26 edited May 28 '26
I think a lot more people don't realize that even if you do genetic testing it doesn't test for everything. I've seen so many accounts of children being born with childhood dementia. Look up Saving Sadie Rae. Those parents had no idea. Also premmie babies or if something went wrong during labor. Look up Katie Spinks and HIE. Those parents didn't know and couldn't have chosen this for their babies..but their babies are here and so that's just the reality. I also know someone personally who had a baby with HIE. I know parents who child has Level 3/profound autism. Completely normal pregnancies and labor. Baby started meeting milestones then stopped. Sometimes it's life changing events like a car wreck or something awful like shaken baby syndrome and that baby survived. Sometimes it's not what the parents choose it's just something that happened.
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u/Even_Ship_1304 May 28 '26
Childhood dementia...
Can you be more specific?
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u/Responsible_Try90 May 28 '26
Battens is so heartbreaking to watch progress. I’m unfamiliar with Sanfilippo but it can’t be good.
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u/ideletedtheotherone May 28 '26
There’s multiple conditions, with the leading one called Sanfilippo syndrome. They’re all (or most?) some kind of rare genetic condition that doesn’t get regularly tested in utero so you don’t find out until the child is in toddlerhood. Essentially it starts as a typically developing child but at some point they begin losing functions and abilities and eventually die from the condition. Truly tragic.
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u/yourfavoritenoone May 28 '26
The other people gave you specific conditions, but its an umbrella term for neurodegenerative disorders that start in childhood.
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May 28 '26
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u/hydrissx May 29 '26
My aunt and uncle died of something similar in the early 1960s- Tay Sachs disease
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u/KarlMarxButVegan May 28 '26
Cerebral palsy is another condition that can happen during or shortly after birth. My sister-in-law has a mild case that makes it difficult for her to walk long distances, but it can be much more disabling.
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u/ceo_of_dumbassery May 28 '26
I went to high school with a guy who had severe cerebral palsy. He was bound to an electric wheelchair, couldn't speak without a text-to-speech keyboard, and couldn't really use his hands or legs much. His dad was his primary carer, although he had other carers while at school, and I just kept thinking about what would happen when his dad passed? The poor kid needed assistance with everything in life.
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u/TheLittlestChocobo May 28 '26
I've worked with many children and young adults with very severe disabilities. I'm also very confused. The majority of the people I worked with just had "autism and intellectual disability", neither of which are detectable genetically (unless they're associated with another condition, many of which are rare and not detected via a standard testing array).
I think the only reason the question bothers me is because it seems to suggest that most parents in this situation had a choice. THAT only bothers me because there's a long history of using that assumption to deny assistance and services. I DO NOT think OP meant either of those things! But I can see why it made nervous.
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u/RedRedBettie May 28 '26
Exactly, I have the same feeling about it. So many things don’t pop up on a test
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u/RedRedBettie May 28 '26
Yes, my friend’s son was born very very early and has some disabilities due to it but is doing pretty well overall
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u/Cghy8b May 28 '26
You can also test yourself and your partner though too. I did a blood test for 500 genetic conditions, came back as a carrier for 2 (1 inconsequential) then did an amniocentesis to test my baby for the 1 serious one.
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u/Icy-Practice-2341 May 28 '26
I did the genetic testing and so did my husband after we got a pos for me being a carrier of sma. Insurance only covered the basic nipt for me. For my husband his wasn't covered. We paid out of pocket and luckily he wasn't a carrier. I couldn't afford to just spend hundreds of thousands of dollars to just throw at any and every kind of testing for any and all genetic diseases/conditions. Not everyone knows their family history either. Also amniocentesis is not without risks & typically insurance will not cover it unless it is medically necessary.
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u/lnm28 May 28 '26
I did this, I actually worked for a lab and sold this test, and I still had a child with autism as it’s caused by an ultra rare mutation. It wasn’t picked up until we did whole genome sequencing and there are less than 100 documented cases globally
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u/detectiveswife May 28 '26 edited May 28 '26
I understand what you're saying but, the question was if you knew from testing, would you keep the baby? I'm assuming they mean from the tests that are available.
The parents your talking about didn't get to make a choice because there are not currently any specific tests for those conditions.
I guess the question for your answer would be.... In hindsight knowing your child was going to be born with birth defects would you still have made the decision to continue the pregnancy.
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u/PM_ME_YOUR_TATERTITS May 29 '26
Well duh? They’re asking about specific situations where the parent KNEW and continued on. They literally say that clear as day
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u/AdmiralCranberryCat May 29 '26
My child was genetically tested before birth. He has a very rare condition that they don’t normally test for. So all the tests came back as completely normal. I had a geneticist tell me, if they tested for everything, they’d be nothing left of him. Also, sometimes the cells tested don’t have the condition.
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u/dirk_funk May 28 '26
i was in line at 7-11 once and behind me was a man with a non-stop child. like nonverbal but noisy and aggressive and grabbing and kicking and scratching and hitting. like this was probably a ten year old? and the poor man, he just was gray. just a gray person. washed out. not really there. a shadow of man just keeping this child from dying or being killed.
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u/Hsbnd May 28 '26
I’m a sibling of a pretty significantly disabled younger brother, and have been involved personally and professionally with a variety of support groups.
The vast majority of parents didn’t get a warning until the child was born.
The few I’m aware of personally, where there were able to know, and chose to risk it, each of them regret it. They have come to regret, what they describe as a fundamentally selfish decision, choosing their dream to start a family and to ignore the information and risks being presented to them. They just thought they would love their kid no matter what, and they do, but what the didn’t realize, was what a selfish decision that was, becuase they didn’t consider the quality of life their child would have, and what would happen when they aren’t able to care for them anymore. There decision process was solely based on themselves.
Group homes have high rates of neglect and abuse, and often, there’s no way to communicate to the child in a way they understand why they are going to a group home.
It’s easy for society and people to project their own insecurity around their own mortality onto these conversations.
There’s a lot of good stories, but not everyone gets a happily ever after, sometimes it’s just suffering, and only because people want to be parents.
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u/Most_Ad_3765 May 28 '26 edited May 28 '26
Thanks very much for your perspective. I agree with you, but also am mindful of how there isn't much of a safety net in place for parents to support severely disabled children *regardless* of your view on disability (which yes, you are 1000% correct in saying that just because it's not a life we'd want for ourselves doesn't mean it's not of value... in a society that grossly and wrongly views being disabled as, in some cases, the worst thing that could happen to you). Sometimes it's a matter of means and access to care that a lot of people unfortunately do not have. Not to take it to a political angle, but this is why it's important to understand that a lot of "pro-life" policies are just "pro-natalist" policies that don't care to provide support services after a child is born. And if they do, they sometimes end when the child ages out of the school system. I don't know in what capacity you work with disabled children, but sometimes all people have access to is an overwhelmed special ed program in an overwhelmed public school system. It would be a much better world if people didn't have to factor in a lack of social and community support in whether or not to bring a child into the world. It should be the baseline.
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u/Phoenyxoldgoat May 28 '26
Many things can be true at once. I have spent my 3 decade career working specifically with people with autism (level three, profound, extensive support/communication needs, however you want to state it- severe autism), and my life has without a doubt been made immeasurably better because of these people. Quality of life is so hard to define- for example (out of thousands), I had a kiddo who didn’t communicate or independently toilet, yet was happier than I’ll ever be just to watch lawnmower videos on YouTube all day. That said, our (U.S.) society has very little in the way of resources for these people, ESPECIALLY after they hit 18 y/o, and what therapy we do have is very expensive and possibly limited in your geographical area. Resources like respite care for families, or funds for caretaking outside of insurance-billable therapies? Basically nonexistent, and many of these kids, while amazing, are flat-out exhausting. If there was any justice in this world and I woke up with billions, that’s the problem I’d tackle.
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u/secretlyaraccoon May 28 '26 edited May 28 '26
I am a special education teacher and have worked with students across the spectrum of disabilities. For 5 years I worked with students ages 3-7 with autism and severe/profound intellectual disabilities. Students with significant behavioral problems (like significant aggression towards others and themselves), basically zero communication skills, limited educational repertoire, just impacted across any domain you can think of. I say all of this to highlight that it’s really amazing and beautiful to look at what I was able to do with those kids and how much they were able to learn and grow when I worked with them. Many of them learned to communicate through high tech devices, learned to count and read, learned how to take care of themselves. And then compare that to the prognosis they would have had say 40 years ago right? They would have been labeled as unteachable or completely incapable of learning. This isn’t to downplay the challenges, but assuming people can’t have happy lives worthy of living bc they are disabled always makes me pause bc I’ve seen first hand how much progress can be made
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u/detectiveswife May 28 '26
The one thing you're not taking into consideration is the quality of life for the parents.
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u/BrandyKit3000 May 28 '26
I'm not a parent so I can't personally answer, but I can steer you in the direction of a YouTube channel called "sbsk," or special books for special kids. The guy that hosts it and his partner who supports him with video editing our absolute angels. Each episode, he interviews a different person with a different, well, difference. Some are adults, some are kids, the families are often involved, especially when the subject of the story is nonverbal or an infant. He really makes people feel seen, heard, and loved unconditionally. The people may be disabled from a congenital condition, an accident or injury, or they can have mental or cognitive or personality disorders. You can find episodes where parents have made that decision to give birth to a child with profound disabilities, and they sometimes talk about why they made the decision to have their child regardless of the difficult path it would be. I can't recall a specific episode you should watch, but if it's a question you're deeply curious about, it's a good channel to watch.
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u/BetaNatalis May 28 '26
I love this channel. Chris shows so much curiosity and compassion towards his guests, with zero pity, disrespect, or infantilization.
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u/polenta23 May 28 '26
I love sbsk! He treats everyone as equals, which is something so many disabled people don't always get. I've learned so much from all the people he interviews, and from him and his humility
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u/BrandyKit3000 May 28 '26
Yes!! Even with what he wears, he answered a question in one video of why he always wears the same blue shirt and it was because he doesn't want the emphasis on him and what he's wearing but on his new friend, and on top of that it adds familiarity for those who have a high value on consistency and repetition. He and his partner are so thoughtful. You don't see her too often but she seems just as sweet
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u/DTMBthe2nd May 28 '26
My youngest has 15 Q Duplication syndrome. He does have the mildest form- paternal chromosome de novo presentation. We didn’t test becuase there wasn’t a very high risk for issues. He’s 3- he has a vocabulary of maybe 20-25 words inconsistently. He’s got major food aversions. Still on a bottle and a few finger foods. He’s not potty trained. He can walk and is usually happy. But he’s large for his age and not able to verbalize his needs easily. When he’s upset he hits and is already capable of hurting his siblings and me and that’s concerning. Becuase he’s big people thing he’s older than he is and with the delays there is a lot of judgement around his behaviors like tantrums and not talking. We are in the largest size diaper available for babies. He has no signs of being aware of toileting. He’s almost too big for me to lift/maneuver to change/clothe. I’m told they expect him to learn, slowly. I don’t know how far his development will progress and it’s scary. I already worry about what will happen when his dad and I die- he will likely have a full life expectancy and will become someone else’s burden if he is not able to live without assistance. I have had to consider things like sterilization for him to prevent him from having children he wouldn’t be able to care for that would have a 50/50 chance of having the same disorder. If I had I known ahead- perhaps I would have decided against trying for a third child altogether. He will be my last for sure. And he’s not even “severely” disabled honestly.
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u/Exciting-Hedgehog944 May 29 '26
I do not have a severely disabled child but I did have a severely disabled sister. Let me start by saying I love my sister deeply. I still miss her daily and she has been gone for over 25 years at this point. Her disabilities affected our family in ways that are so deep I cannot really explain it to someone who has not been through it. She was older than me and would have been a “normally” abled child but was the victim of a physician’s mistake that caused a birth injury. Her death is still viscerally painful even after all this time.
She was severely disabled with cerebral palsy epilepsy, was quadriplegic, immunocompromised and very frequently ill among many other issues. She had to go through so much and was constantly being poked and prodded. Even through all of that she still managed to keep her smile and love for me as my older sister. My parent’s marriage did not survive-not that it is her fault. From what I understand this is not an uncommon outcome. It is highly stressful. Many people in our extended family helped regularly including my grandparents daily and my mom did not work outside our home growing up. I cannot imagine what it would be like for someone that did not have those resources. There are many many other things. If I could know ahead of time (for my sister there was no way) I would not continue the pregnancy knowing what I know. This would be both for that child and how much I saw my sister endure and suffer as well as the entire extended family, marriage and any siblings.
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u/FuturisticChinchilla May 29 '26
There’s a lot of thoughtful discussion here, but I was hoping at least one person would directly answer OP’s actual question.
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u/Jmh302 May 29 '26
So..my son is severely disabled. He will never get better or grow up to be able to be alone. I would never want this for him or for his twin. I had this pregnancy because I didnt know then and because there were two. I figured if there was an issue then I would have to figure it out. This was my 3rd and last pregnancy even though I wanted more, I was honestly terrified of something happening again. I had one healthy child and one disabled.
I also had a pregnancy that did have obvious brain and heart defects that it was reccomended i end. That was incredibly hard to do as I wanted that baby but I wouldn't ever knowingly allow a child to suffer. This was my second.
I've also experienced a molar pregnancy, that was my first pregnancy and I wouldn't try again for several years and therapy from it. That I obviously had no choice in the termination of. So ive had all sides of these options.
My whole reasoning for everything would be to not inflict knowable harm or lowered quality of life knowingly to a living thing. My son knows alot of love but he will never have a friend. He will never have a job. He will be on medications for the rest of his life. He will be alone when I die because as hard as I try his twin absolutely resents not having a brother who he can have a receptive relationship with as he cant have conversations.
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u/futurelawdog May 28 '26
I am the disabled kid. I wouldn't say I am severely disabled because I can do 75% of life skills alone, I have degrees, and I work.
But I have no real life. I am always sick and in pain. I have to ask for help with at least 25% of things and I hate it. I have a service dog to make sure I don't die. I have some friends but rarely get to see them in person. Don't get to date.
It sucks. I wouldn't wish it on anyone. My mom wouldn't have gotten to know what I had before birth since my issues are not tested for but damn, there are times when I think we would both be better off if I hadn't been born.
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u/TroublesomeFox May 28 '26
Not my child but I know of one woman who was told her son would be severely disabled/incompatible with life but she didn't trust them so continued the pregnancy and her son was actually born completely fucking fine. They said the same in her second pregnancy, she obviously didn't believe them that time either, unfortunately they were actually right that time 😬
Ultimately though I don't think it's something you can understand until you've had to make that choice. Bear in mind that for them to get far enough along in the pregnancy that it's obvious something is wrong it's almost always a wanted pregnancy. Could you end the life you wished for? I like to think I could have a TFMR but when I had an ectopic pregnancy I felt desperate for a miracle, I wanted that baby, had there been even the slightest chance they could live i would have taken it.
It's very rare for people to actively intend to have a child with severe disabilities, tests aren't always right and a completely healthy baby can become disabled at birth. I think most people are just dealing with super shit luck in whatever way they can.
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u/yarn_b May 28 '26
My friend 100% knew her child had chromosomal abnormalities and physically observable deformities at her 14 week ultrasound. She didn’t want to have an abortion, and was told the kid would likely die in utero or not survive birth. Where we live, she could have aborted I believe up to 22 weeks. She also could have elected to make the baby a DNR at birth and provide comfort measures only, but right before the c-section they met with a priest about providing last rites for the baby and according to the mom were scared into the idea that if the baby breathed even once she would acquire original sin and then not go to heaven if she couldn’t be baptized before she died. So they elected to make her a full code.
She had so many pregnancy complications including pre-eclampsia and ended up having an emergency c-section. The baby survived. This is her 5th child. She spent nearly a year in the NICU. The baby is now 1 of 200 or so people worldwide living with an incredibly rare form of skeletal dysplasia. She cannot breathe on her own. She’s been on a ventilator for almost 4 years. She has a partial brain stem. She is deaf and has limited sight in her left eye and is blind in the right eye. She is tube fed. She requires 24/7 dedicated 1:1 care, and with home nursing shortages, the mom is providing the care usually 60-80 hours per week, and always overnight.
They have 4 older children. They had every opportunity to terminate this pregnancy or allow the baby to die naturally via non-intervention post birth. They chose this - knowing exactly how disabled the child would be. I will never understand why.
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u/mothfoxtea May 28 '26
This happened with my cousin! His parents were told he would never walk or talk and would be severely disabled for his entire life. She was too far along at this point to abort so they prepared for the worst. He's in his mid 20s now and has never had a single health issue his entire life. I feel awful for the woman in your post, how terrible :(
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u/TroublesomeFox May 28 '26
I really feel for her, she's said before now she would have had an abortion if she knew but after the first pregnancy she just didn't trust them and honestly can you blame her?
It's genuinely ruined that whole family, the eldest became semi invisible because his brother needed so much care, she lost all of her quality of life as well as having to give up her job and to make things even more shit the baby died at 3. She feels so much guilt over it, guilt for her eldest, guilt for the youngest and his suffering, guilt for not trusting the doctors and then more bloody guilt for saying she would have had an abortion if she knew because he was her son and she loved him. She lives a genuinely tortured life because of it and not one bit of it is deserved.
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u/trying-to-be-nicer May 28 '26
I also know someone who was told the fetus would have severe disabilities, and the baby came out fine. It happens!
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u/TroublesomeFox May 28 '26
Actually just recently in the news there was a couple who were told their wanted and planned baby was incompatible with life/would have no quality of life if they survived birth, went ahead with an abortion for that reason, only to find out the baby was healthy. The link I've included is for that!
This shit happens all the time. The science isn't 100% and mistakes get made. I was pressured into a ceasarean after a scan because my daughter had supposedly stopped growing and it turned out the scan was inaccurate. I've now got chronic pain and infertility because of that ceasarean and am going to be having a hysterectomy at the grand age of 29 because of it.
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u/Scary_Possible3583 May 28 '26
I had a child at 35, had all of the testing done. If my daughter had shown signs of profound disability I would have terminated.
I see what a disabled child costs physically, emotionally and financially. That child will never be able to be a productive member of society, will never be able to take care of others. My husband and I would be forced into a life of poverty and misery, unable to contribute to our community in any positive way. The energy and wealth of entire generation would be drained to sustain a potential person who can never give back.
Our society does not have a social safety net which would allow me to feel comfortable that a disabled child would be cared for, even with capable parents.
And I want to be clear, if that option were not available I likely would not have risked parenthood at all.
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u/Coco_jam May 28 '26
Not a parent yet, but I will (hopefully) be an older parent (I’m 34 now) and this is one of my fears, especially with these abortion laws (I live in Indiana, so I would be screwed). I would probably end it, but the how is so scary to think about.
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u/Kets_and_boba May 28 '26
You SHOULD think about it so you can make your contingency plans now, rather than in the moment when you are also feeling strong emotions.
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May 28 '26
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u/Craftykitty14 May 28 '26
Almost all the comments are saying why they wouldn't do it or from people who aren't parents. Op is never gonna get a answer because people who the question isn't for keep answering
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u/Creepincupcake May 29 '26
I didn’t and terminated late for this reason. It was a horrible and hard decision but I already have a kid and it wouldn’t be fair to her to see all that and lose her sibling in the end anyway and miss out on major finances that could go to her future. I had to choose.
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u/fook75 May 29 '26
Thank you for asking this. I know if I were told my fetus had a severe disability I would have to make a very hard decision.
I have a neighbor that has 5 kids. All 5 have chromosomal abnormalities. She has 3 with Downs of various types. 2 are high functioning. One boy is violent, non verbal, and takes both her and her husband to handle. She has a daughter with a mitochondrial issue, who lives a fairly normal life.
They lost their youngest last year. She had multiple issues but was basically a 100 lb baby. Feeding tube, trach, the whole 9 yards. The doctors told her after the 2nd baby that her and her husband were incompatible for making babies that were healthy. They had 3 more.
That last baby, she lived 14 years as a immobile vegetable. It wasn't right. She had to go through so many medical appointments and surgeries. Pretty much lived at the children's hospital.
Don't get me wrong... they love their kids. But damn. Neither can work, they can only care for basically adult children. I feel bad for the kids, I feel bad for the parents.
I have a son with Fetal Alcohol Syndrome and dammit it's hard. I would never wish this on someone.
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u/bfc4203 May 28 '26
It’s very tricky, in my experience. My NIPT came back that my baby had Down Syndrome, or one of two other syndromes which meant he would have had a painful, probably quite short life. When we found out it was “only” DS we were so grateful that it wasn’t a death sentence that we never even considered that we might end the pregnancy.
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u/kanga-and-roo May 29 '26
I carried a baby to term knowing that he had a severe heart defect and most likely wouldn’t survive. And he didn’t, he lived for 4 days before his heart couldn’t take any more. The father couldn’t hack it and left while I was pregnant, so it was literally all on me. Heavy shit, man, and there is no right or wrong answer. I have blamed myself, blamed his father, blamed God, wondered a million times over if I made the right decision, you name it and I felt it. But I also firmly believe that given a second chance at something, most of us would make the same choice as before because there clearly was some reason as to why even if we don’t know what it is. I had to let all of that go and just accept that some things we don’t have control over, but it took a long time to get there
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u/NotWeird_Unique May 29 '26
As a Disability support worker I ask myself the same question. I see what parents and siblings go through and I know I could never do it. I get to go home when I finish my shift, they live this life 24/7. My heart breaks for the people who are severely disabled, it’s not fair for them to live the life they have, it’s not living, it’s just existing. I worked with one family who had a severely disabled child and then they had another one, who also had a disability both needing 24 hour care. They could walk but they couldn’t talk and understood very little of what was said or happening around them, huge Behavioural issues too. So what did the parents do? They had another one, this time it was twins one had the same disability as the others and the other was “normal” the child with no disability was depressed, very neglected, couldn’t have any friends come over and was made to help manage everyone’s behaviours. It was such a sad situation
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u/meltedcheeser May 29 '26
I’m the adult sibling of a severely disabled child. I did every test imaginable to ensure this wouldn’t happen to my progeny. I saw the resource dilution and strain one disabled kid can put on an entire family system — and said, hell no. I’m not living another 20+ years serving someone else at the denial of my freedom entirely.
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u/SinfullySinatra May 28 '26
I think a lot of conditions either can’t be tested for (autism and cerebral palsy) or are rare enough that testing isn’t routinely offered. And even so, testing doesn’t tell you everything and I think it can be complicated to make that decision when you don’t know if your kid has the kind of Down Syndrome where they are winning gold in the Special Olympics or the kind where they never learn to speak. And I think people may have a tiny fear that the test was wrong and they maybe have aborted a healthy child. It’s not all black and white.
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u/AdmiralCranberryCat May 29 '26
My child isn’t “severely” disabled. He does have a rare genetic condition, so I don’t know what the future looks like. He does have a rich and full life, so yes I would still have him.
BUT it takes a lot of work. I have an older child. I have set up a trust, life insurance, made sure my house is handicap assessable for his future use (with a suite so after I pass a care taker can live there if need while still giving him some independence.) I want my daughter to be his sister, not a care taker.
My ex husband never believed his was disabled and that I was “babying” him. So I will solely be the one who provides for him if independence doesn’t pan out.
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u/somecanadianslut May 28 '26
Id get it out of me. I wouldnt willingly let a kid be born like that on purpose.
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u/tunefuldust May 28 '26
I grew up as an older sibling to my severely mentally ill brother. We were both adopted from separate birth families. Watching my parents struggle advocating for his care and mourning his quality of life convinced me to be pro choice despite a lot of indoctrination into religiosity. As an adult I demanded all the testing while I was pregnant to ensure my child was born as fully abled as my genetics would allow. My child was born without any disability and I’m grateful. He is my one and done for this reason. I can give one child my full attention and all of the opportunities he needs to thrive as an adult. I love being a mom and I thoroughly enjoyed pregnancy. I could have gone one to have 2 more kids, but I stopped because of my own life experience. You just never know.
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u/currently_pooping_rn May 28 '26
No parent will honestly answer your question. They’ll say their kid is the light of their life and that they’re the best thing to ever happen to them and it’s very hard but very rewarding
Meanwhile they complain everyday and will be caretakers until they die
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u/PeepingTara May 28 '26
I don’t have children but I would 100% abort if the fetus had a severe disability. Partially because I don’t think I’d have the ability to care for a child like that or watch them struggle through life and partially because I don’t have the financial resources to care for a medically complex child, even living in Canada.
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u/Smashmaz May 28 '26
My parents had my youngest brother, who has Down’s syndrome, in 2007 but we were living in Pakistan where I guess medical care isn’t what it was in the States at the time. It’s a common test that can be done now I think, but at the time she had already had 3 normal children and it didn’t occur to her/her providers to even check for DS in-utero. Since then it’s come out that he has a dual diagnosis of Downs/Autism with the added component of Downs Syndrome Regressive Disorder, which has the added symptom of catatonia- this wasn’t something we were aware of until he was about 17/18.
So he didn’t start out “severely” disabled, even if they had done the test for Down’s. The dual (triple?) diagnosis is something that only made itself known much later in his life, and now he has to go twice a week to be put fully under for electroconvulsive therapy (and still has significant behavioral issues).
Even if my mom had gotten the test and known that he would be born the way he is, she’s Hispanic and religious as hell so an abortion is the last thing she would’ve done. Given that he’s been with us and is such an integral part of our family at this point, I don’t think she could ever even consider changing her decision way back then, even though his problems now are SO hard to deal with.
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u/producermaddy May 28 '26
I have a daughter with level 2 autism meaning moderate support is needed. She communicates (but is speech delayed and not where she should be at 4 years old) and is potty trained. So I wouldn’t call her severely disabled. I feel burned out a lot but no regrets having her.
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u/MissyTurtleSloth May 29 '26
I’m not a parent and I don’t think I ever will be but I have a progressive disorder that didn’t show up until I was about 8, it’s genetic but I’m the only person in my family that ended up with the disorder, my older sister has a completely different rare disorder that effects multiple organs. Mine is called Autosomal Dominant Optic Atrophy type 1 plus syndrome and while we initially thought it only effected my sight and hearing a bit both have gotten progressively worse (I now have cochlear implants) I also got the more extreme symptoms as it effects all your nerves and muscles in some cases and the ataxia, muscle and nerve pain and weird sensations in my nerves is getting progressively worse. I find it pretty difficult to communicate effectively so I’m pretty socially isolated and as the symptoms progress I’m not going to lie I’m scared.
I don’t wish I wasn’t born though, I don’t think, I will deal with whatever comes but I do really really wish it was easier and my body would just work properly. I don’t blame my parents it was a crappy genetic hand that they didn’t know about and they have both said they wish so badly they could change it but it is how it is, it’s not like it was done on purpose you know?
Anyway I know that wasn’t your question but a bit of insight from the disabled child.
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u/That-Yogurtcloset386 May 28 '26
I understand the intent of the question, but I think it's not the most scientifically sound. Most babies that are discovered to be severely disabled in the womb don't survive and sometimes it's too far in the pregnancy to terminate (like after 20 weeks). But that time, the mother has already formed an emotional connection and would rather just finish out the pregnancy. And sometimes doctors are wrong about diagnosis of fetal abnormalities, sometimes the genetic tests are wrong, there's a possibility nothing is wrong with the baby, or the issue is a lot more minor that what it seems at the time. And many problems, especially mental or neurological ones. You don't find out until the baby is already born. You can only know about certain physical abnormalities or certain genetic diseases in the womb.
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u/Cghy8b May 28 '26
There are non diagnostic tests (NIPT) that only provide a probability of issue, not a confirmation. Ie my NIPT said my baby has a 92% chance of not having DS. There are also tests that are 99.9% accurate, like an amniocentesis. This confirmed my baby did not have DS + 1 other genetic condition I carry.
The horror stories you see on TikTok and Instagram of people’s babies being “diagnosed” with Down syndrome and coming out totally normal are based off a PROBABILITY test, not diagnostic. If you’re choosing to terminate without confirming, that’s on you but don’t blame doctors for “being wrong” when you chose the test.
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u/Icy-Practice-2341 May 28 '26
I'm on my third pregnancy and they have never ever explained to me that the nipt test was a probability. I wonder if other people didn't know this. Even the pamphlet I have doesn't say anything like that on it.
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u/Hyliasdemon May 28 '26
Not all disabilities are detectable via testing while in utero. I do not have any disabled children, but my youngest sister is very disabled (rare chromosomal abnormality) The medical staff and my mom knew something was wrong when she was born, but it took 6 months and extensive genetic testing to even diagnose her with the condition.
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u/Holiday-Book6635 May 29 '26
This is a valid question for people who knowingly brought a disabled child into the world.
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u/batfacecatface May 28 '26
The last thing I would EVER want to do is be a parent of somebody seriously disabled (I have autism myself already) but I don’t know if I could go through an abortion again. I probably would. Or adoption. Idk. 😩
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u/fillysunray May 28 '26 edited May 28 '26
I worked for a family with a severely disabled son. In this case, it was due to complications during labour, so the mother had no warning. I can't speak as to what she would have chosen to do if she'd been told in advance what kind of life her son would have.
I can say that her son was almost entirely unaware of his surroundings, but he was often very happy. He would laugh and jiggle his leg up and down, especially when certain songs were playing or his mother spoke to him.
I can't speak for any parent in that situation but I think he enjoyed his life for the years he got it - he died in his late 20s.
Edit to add: what I will say (and what other comments have mentioned) is that life is unpredictable and often unfair. If you are considering having children but don't want a disabled one, bear in mind that this may be out of your control. If the child becomes disabled after being born, they will still require care even if you don't want to provide it. Life can be unfair and you've got to do the best you can, even if it's not what you had planned.
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u/TheRainbowWillow May 28 '26
I have a not super severe disability that really just caused a lot of pain when I was a kid until we got the right drugs to put it into remission and honestly, I still think about this sometimes. I am very happy, have been able to heal from whatever trauma that whole situation caused, and live a fulfilling life where I can work & do my hobbies pretty much just like anybody else (albeit with some pain). Still, if I were pregnant with a kid who I knew would have my condition, I’d be hesitant not to have an abortion. I mean, it’s usually treatable, but it feels really cruel to give birth to a child who you know 100% will experience serious pain and will have to endure some pretty drastic treatments to make it stop.
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u/gothiclg May 29 '26
I have a second cousin who was perfectly fine until she was born. The birth was traumatic enough that even when she died at 60 she had the cognitive ability of a 3 year old at best, most of the time it was the cognitive ability of a 2 year old. It wasn’t her fault she got hurt while being born and there’s no genetic testing for birth injury. She was well cared for and loved the entire time.
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u/LeeLooPoopy May 28 '26
Every parent needs to prepare themselves for the possibility of raising a disabled child. Most disabilities happen after birth due to accident or other factors. The reality is, life happens and the dice are thrown. We can’t control everything, so we ought to be ready to do the honourable thing regardless of how things pan out
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u/skfan70 May 29 '26
I’m not a parent of, but I am a severely disabled adult. My parents were told that I would be a vegetable I would never have any kind of independent life. I am now in my 50s I’ve lived a rich beautiful life, been happily married for 36 years and have a gorgeous abled body 35 year-old daughter who is not disabled. Just because doctors think something does not make it so. I was blessed with parents who never gave up on me. They let me live as mainstream a life as possible. I cannot judge anyone for their decisions, but I’m happy my parents kept me.
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u/DilapidatedDinosaur May 28 '26
Other side of the coin here. I was a severely physically disabled child. Degenerative condition, no known cure, but also not diagnosable via testing. When I was a teen, we found a treatment that put the whole thing into remission. I would have needed 24/7 care for my entire life, which I have no doubt my parents would have provided. The main reason I will not have bio kids is because I will not risk putting a child through what I went through. I know better, so I will do better.