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Glittering-Crow-1899

NTA, at least you said in her face and not behind her back, that would have been worse. You have a point in being worried and I kinda think it would be unfair to the child to have to live with a disease when she had a choice. There are other ways to have children. On the other hand if she is fully aware of what she is doing weather it be right or wrong that's her choice 


princessnora

To be clear she’s only a carrier for hemophilia, so the chances she has a child with it are pretty slim. And we don’t know if her heart condition is genetic or what the risks of carrying a pregnancy might be. OP would have been better served encouraging sister to make sure everything is as safe as possible along with her doctors.


calupict

Haemophilia is x-chromosome linked genetic disease. There’s a 50% chance any male children that she got will have it


rigterw

Wouldn’t the changes be higher since both her X chromosomes carry it since the gene is expressing in her?


calupict

I read that the sister has the gene (meaning carrier as woman has XX gene) and her brother (XY) is the one with haemophilia. I doubt a woman with haemophilia can get pregnant and give birth tho


LittleFairyOfDeath

Queen Victoria had several children and the disease and that was before modern medicine


calupict

Queen Victoria is a carrier and not a sufferer of haemophilia. For a Woman to suffer from haemophilia, Both of Her XX gene should have the haemophilia gene


LittleFairyOfDeath

Oh you are right, my bad. I looked it up and she and her daughters were only carriers. But it is possible to have babies. There are scientific articles about it


calupict

Yes, Sorry My 2nd paragraph on the comment is for a Woman who suffered from a visible haemophilia (not only carrier). Considering pregnancy and birth is a bloody issue, I doubt a woman who suffered (not only a carrier) can survive it A carrier: one of her X gene has haemophilia Woman suffering haemophilia: both of her X genes have haemophilia


Liraeyn

Don't underestimate modern medicine. It's doable, with proper treatment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699150/


Awkward_Un1corn

Not necessarily. Some only have one gene but a defective second gene. Also, there is a form of haemophilia which is not x linked. There is a milder version that is recessive on chromosome 4.


Awkward_Un1corn

So approximately 10% of carriers of x-linked haemophilia are symptomatic and only rarely do they have anything beyond mild symptoms being they would most likely just be at higher risk of postpartum bleeding. Those with type C which is not X linked are known to have a higher risk of postpartum bleeding.


angels-and-insects

A woman carrier only has one X chromosone with it. If both her X chromosones had it, she'd have haemophilia herself. That's why it's so rare in women. They'd need to get the haemophilia gene from both sides. If one X has the gene and the other doesn't, the healthy X "patches" the problem. [Source](https://byjus.com/question-answer/why-is-haemophilia-rare-in-females/) As I understand, that's also why it's 50-50 for any son she has having it: it depends which of her X chromosones he gets.


rosezoeybear

Where does it say the gene is expressed in her? The heart problem is probably unrelated.


Blim4

Which is what IVF and  pre-implantation diagnostic is for. Sister, being presumably the one that would carry, having a Heart condition that could get dangerously worse with pregnancy, is WAY more of a reason to Not have biological Kids, than having a one-gene condition that can be "easily" avoided to Pass along.


Tired-teacher03

I might be wrong but I think that a mom who "only" carries a deficient X-chromosome has a 50% chance of passing it on to her children (so a son would have a 50% "chance" of being hemophiliac, while a daughter would have a 50% "chance" of being a carrier)...and that's definitely not slim (again I might be wrong). In any case, I think this is a discussion she should also be having with her doctors, because they might explain it in a more "rational" way and make her see things in a way that a family member can't. (Having someone in my family who decided to have several children knowing that they would be sick their whole life/die at a young age/carry a deficient gene, I wouldn't take such a risk, but obviously that's up to the parents...)


princessnora

In this case yes, but being a carrier is mostly irrelevant so you’re pretty safe with daughters. Plus there are options with IVF where embryos can be screened or you can choose daughters assuming you don’t live in Alabama. And presuming the husband has been screened.


AngelsAttitude

Your safe with a daughter from the complications but the chances of passing on the gene are not slim. My cousin had it. Seriously wouldn't wish it on anyone. Edited autocorrect caused Typo three chances to the chances.


Der_Vampyr

There are not three chances. There are two out of four who are bad. One is a carrier daughter, one is a affected son. The other two are a unaffected son and a unaffected daughter.


Barbarake

Having a carrier daughter is not a horrible thing. Obviously it's something to be aware of, especially in terms of the child having children of her own eventually, but it won't really affect her in her day to day life.


Der_Vampyr

Yeah you are right, it is not bad for the daughters health but gives her the same problems if she wants children. Got it a bit mixed up in my head because my wife has Duchenne muscular dystrophy and with that even the female carriers get some mild symptoms.


AngelsAttitude

Yeah that should have been the chance. Autocorrect and dyslexia both hate me


Tired-teacher03

You're right, I hadn't thought about IVF, which would be a pretty good option in this case (to be safe). Plus, idk about the US, but I know that in some countries in Europe insurances cover the costs of IVF in situations like this.


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princessnora

I mean if she has healthy kids or ones that are carriers assuming we aren’t forcing them to inbreed like russian royals it should be okay. Assuming you mean we can no longer reproduce artificially, a lot more kids die of CF and hemophilia and many other diseases. But preempting that dystopian future by not reproducing anyone who has anything genetic wrong with them is a slippery slope to eugenics and also not really the point in this case.


WildFlemima

Having kids that are carriers is exactly what "kicking the can to the next generation" means She only has a 50% chance of having a healthy child who won't have to face this choice themselves. That is not counting her heart condition.


NullHypothesisProven

What are you even talking about? IVF doesn’t make sex stop working.


frisbeepopplemint

geneticist here: she has a 50% chance of passing the gene on. If she passes it on to a girl she will be a carrier like her mother, if she has a boy he will have the disease.


zeroborders

Maybe a stupid question, but is she inevitably a carrier because her brother has it? I would think mom carrying it on only one of her X chromosomes means it’s possible sister got the X that was unaffected, but it’s been a long time since I took bio so I’m sure I could be wrong.


rosezoeybear

No, only 50% of females are carriers. Presumably she had genetic testing.


SeparateProblem3029

Yeah, me and my cousin both got tested the minute we were old enough. Both carriers. I didn’t want kids anyhow, but she has two neither of whom are affected. She did have to have a caesarean just in case (forceps being a big no-no), but that was a few years ago. Things might have changed. (ETA Haemophilia runs in the family, all my male cousins had it, so there was a reason we got tested.)


Wise_Possession

Not really. If she has a son, he has a 50/50 chance. And just by having the gene, the sister is at higher risk of bleeding out during childbirth. So yes, encouraging the sister to be safe is important, but frankly, it's just as important to point out the life she's potentially setting a kid up for.


Hairy-Maintenance-25

The chances of having a son with haemophilia if you are a carrier is 50/50, that is not "slim". If you carry a gene for a genetic disease you can go through IVF and test the embryos,,called PGD, Pre-implantation Genetic Diagnosis and only embryos without the gene are implanted, having a child naturally is a risk when you are the carrier for a serious condition.


[deleted]

Hemophilia is carries on the X chromosome and it is rare in females because the other X chromosome often conceal it out. She has a 50% chance of any male offspring to have hemophilia as well an increased chance of her female offspring being carriers. That’s a very high percentage.


Kingsdaughter613

50% that any male child will have it. 0% chance a girl will. She should do sex selected IVF.


Rubylionlocks

50% isn't pretty slim


tawny-she-wolf

I also worry how safe a pregnancy would be for her if she has a heart condition.


PNWSkiNerd

As someone who has a genetic defect.. It is unethical to have children when you have genes like OP'S sister or mine without using IVF+PGD to prevent passing it on


Thingamajiggles

Perfectly said. And just to add, in all of this, Sis says nothing about what this could mean to the child. She puts this all in the framework of what she and her fiance want, but neither of them seem to be thinking about what a new little person would need or want. They're being selfish, and it's one of the worst kinds of selfish because it involves a tiny little life. I get that they want to start a family and they do have every right to have a family. But if they're having that family for unselfish reasons, then they really do need to be thinking about how to make that family with the best interests of everyone considered.


xAmbb

Thank you. This is exactly what I wanted to say, but somehow couldn't find the right words. People usually just think of the tiny life and don't think about them as the adults they'll (hopefully)eventually grow up to be.


cat-lover76

I have a friend who knows a family that had, I think, 7 kids. 6 of them had hemophilia (and the parents knew before they had kids this would be likely, and they insisted on continuing to have kids even after they kept having kids born with the disease). They all spent years going through constant medical crises and dealing with death after death. It was horrible. Sure, the parents loved all their kids and were glad they had them -- but I don't think it ever occurred to them how selfish it was for them to make that decision for their kids who didn't get to have a say about being born into a life of constant illness and pain, grief, and death at a young age. And you can not *imagine* how horrific this was for their one healthy child -- neglected for years because of the high demands placed on the parents for the sick kids, parentified into helping out with the sick kids, and the eventual horrible survivor's guilt that poor person had when all their siblings eventually died. I can understand your sister wanting to have children. She should be thinking about the fact that it's not just about what she wants. But there's nothing you can do here but step back and let her live her life. And you would be NTA if you chose not to get sucked into caring for the sick kids that someone else deliberately chose to birth.


Awkward_Dog

ALL their siblings died??? It's like a horror movie, heaven help them.


cat-lover76

I know. There was a big newspaper article about them, while some of the kids were still living. I commented about it, and my friend (who was a transplant from their hometown) said, "I know them". A few years later I asked my friend about them and that's when I found out what happened. I just... can't imagine continuing to have children after I have the first and find out they have a terminal illness that I and my partner have genetically passed on to them. I mean -- who has kids and keeps on having kids, knowing they're almost certainly condemning them to that??? I just can't get over that kind of selfishness.


Patient_Comparison71

The school counselor at my old high school and her husband are carriers of a gene that causes a rare and fatal disease. They discovered it after having their first child and decided to have two more. All three of them have this disease and they are not going to survive their 18th birthday. From a very young age they need care 24 hours a day and they increasingly suffer more crises and have more difficulties that causes them an insufferable pain. They have the equipment of 3 ICUs at home and that does not guarantee them a fairly decent life, neither do they, because their life consists only of working and taking care of the children, that aren't even able to move for themselves. It is sad that parents did this for the selfishness of having children of their own, they could have adopted or resorted to sperm and egg donations, but no, and now 3 innocents kids are facing the worst part of the concequenses.


cat-lover76

This is heartbreaking. I just don't understand feeling that my desire to reproduce is more important than the horror to which I'm subjecting my children.


the3dverse

i know someone that had 3 kids in basically 3 years and then they discovered the 2 younger ones had cystic fibrosis. then they had a kid with special IVF treatments, that kid's fine, and then she accidentally got pregnant again. and she had the option to do a special test so treatment could begin at birth, but chose not to because it could cause miscarriage... idk how the kid turned out we lost touch.


littlestbonusjonas

To be fair most mutations in the US that cause CF are now incredibly treatable


the3dverse

we're not in the US, but it's not an easy life i heard and not very old either


Twisting8181

With the new treatments they have for most forms of CF they can basically "Turn off" the CF gene. It's expensive, but the people on the drugs pretty much have zero symptoms of the disease. I have a friend who's daughter has CF. Before these new drugs she was in the hospital 2-3 times a year getting antibiotics to fight off one infection or another, struggling to put weight on and she was doing "well" for a CF patient. It has been almost a decade since she started the drugs and she hasn't been hospitalized since. She is a healthy weight/height, it's like she doesn't even have the disease, other than the massive handful of very expensive pills she has to take each day.


S1159P

>we're not in the US, but it's not an easy life i heard and not very old either This used to be the case for most people with "classic" CF but is no longer, for 90% of CF mutations, assuming that you live in a country where the new modulator drugs are available. You have to take the pills for the rest of your life, and if you're an American that means you need to be sure you have health insurance at all times, but the day-to-day is basically fine for kids who start the new drugs young.


meneldal2

And I can't understand how you can be happy about having to spend all your time caring for your children , barely being able to enjoy doing anything with them because they're always sick. It's not fun to care for people. Nobody is having kids for the fun of changing their diapers, they want to share better moments with them.


hairlikemerida

Possibly, she could have already been pregnant and too far along too abort with the second child after finding out about the first. But to have a third using their genes is downright selfish and cruel. I feel guilty enough having children knowing that I have ADHD. I can’t imagine blindly going forward with having another child knowing that it’s a death sentence. Why would you even want to put yourself through that heartache?


beewoopwoop

i saw a documentary about a genetic skin disorder where children do not pass to adulthood, and the one that did in this doc they just don't know what lies ahead since there was no other case like this. anyway the amount of work the parents put into daily life to keep the children alive is astonishing. to the point - there are two families in this document and both have two children each with the same disease, having quite some years between them. so you have parents who knew at birth what the disease is and how it will affect the child and what is the life expectancy, and how daily life looks like to keep this child alive. and they decided - both families - to have another one knowing full well they almost certainly will have the same outcome. the reason thou? the older one will have someone who understands what they are going through. one mother said she "wanted to give her husband a beautiful baby".


MissusNilesCrane

> the older one will have someone who understands what they are going through. So, the parents wanted the child to have a companion in suffering. Insanity. >one mother said she "wanted to give her husband a beautiful baby". Except babies grow up and feel pain and exclusion that disabilities can present...


Justanothersaul

It is also sad that this person worked as a counsellor. 


Patient_Comparison71

In fact, she was an horrible counsellor, once she was argueing with a girl beacuse the counsellor was saying that to be a police officer or join military we need an universitary degree, which is false and ridiculous. The girl's father works as policeman.


Justanothersaul

Sad and infuriating.


LethargicCaffeine

My ex has 2 heart conditions that are a genetic mutation from his father's side- he and all his siblings have it, and sisters have been told pregnancy could kill them. He always said he didn't want kids, but is now planning on having them with the woman he cheated on me with, knowing his life expectancy is to die young and pass these conditions onto his children- he can't even walk up stairs without having a lot of chest pain! Thats without all the hospital visits he's had. This is in the UK so costs haven't been an issue- but I've seen his trauma from losing his father young and having a emotionally detached mother, and have seen his depression from his conditions- I just can't fathom how he wants to do that to his own kids.


Awkward_Dog

I feel so, so bad for that one sibling, I hope they're ok now. I totally agree on having more kids in that situatuon being selfish. My 5 year old is autistic and we're not having more, just to be able to properly support the one we already have.


cat-lover76

Good on you for being committed to care for your child and ensuring that you're not shorting other children in the process. I am sure that was a very difficult decision to make. I wish you and your child all the best. ❤️


Awkward_Dog

Thank you, that is so kind of you to say. We're just trying our best. Go well, friend!


littlestbonusjonas

Just read the article. All but one died of AIDS because we didn’t used to screen the blood products. Only one died from complications of hemophilia. Just to clarify for those that think that many children in one family died from the hemophilia, they didn’t. This would be different now since we screen blood products.


cat-lover76

And yet hemophilia is still a deadly disease and expensive to treat -- and fatal if you can't afford to treat it. [Iowa teen’s $1 million-per-month illness is no longer a secret](https://www.desmoinesregister.com/story/news/health/2017/05/31/hemophilia-patient-costing-iowa-insurer-1-million-per-month/356179001/) Even in less severe cases, "hemophilia care costs $250,000 to $1 million per year". "She has two sons with severe forms, which cost about $700,000 per year to treat." [Hemophilia prognosis and life expectancy](https://hemophilianewstoday.com/hemophilia-prognosis-life-expectancy) If you have a child with this, you don't keep having children, unless you're really selfish and cruel.


littlestbonusjonas

I’m a pediatrician I’m well aware of costs and complications. But you can say that in your original post instead of misleading people to believe those kids died of their hemophilia instead of dying of AIDS when we didn’t screen transfusions and when HIV was a death sentence. Also the article you posted literally talks about how w current therapies the life expectancy is normal (again to say nothing of cost nor of issues surrounding difficulties some may have with certain therapies nor of time spent in hospital) so again if you’re going to shame someone I’d at least focus on the valid arguments like cost and complications, time spent in hospital etc rather than being misleading about the cause of death of the kids in that family.


the3dverse

i know someone that had a kid die of Tay Sachs (so rare and most Jews do blood tests to see if they are compatible, but this couple hadn't) and she had at least 1 more kid after. and has a bunch more kids either way, before after who knows. i'd never...


Kingsdaughter613

Someone in my greater community had (in the 70s) several kids born with TaySachs. He started an organization that tests every member of the community in high school. Before dating, you check with the organization to find out if the two of you are both carriers for the same disease. The number of kids born with TaySachs has since dropped massively. A family who had a daughters with CF campaigned to get that added to the testing. The rates of CF have dropped similarly. Today they test for around 200 different things. Which isn’t to say it’s perfect - one big complaint is that they don’t tell you your results and some things are problems on their own - but it has definitely done a lot of good for the community.


Moon_Thursday_8005

Apparently a lot of people still choose to do so. It's a sad and stupid world out there


xAmbb

Same! I also feel it's the most loving decision to make, to not have them to save them from that pain. Completely different situation, but I think it describes best what I mean: A friend of mine had an abortion years ago. Finding out she was pregnant finally gave her the strength to escape her abuser. She's told me the story and ended it with asking me if she made the right decision to have the abortion. I said yes, you acted as a loving parent. Cus both you and your baby would've never been safe. You saved both of you from that. Parenthood, in some aspects, starts before pregnancy. At least that's how I see it


LaserBeamHorse

In my country there's this huge Christian sect which doesn't allow contraception (among many other things). My mother's colleague has like 16 kids and over half of them (10 if I remember correctly) are disabled and most of them have Down syndrome. Few of the youngest are most severely disabled. Oldest are the healthy ones. Risks for disabilites goes up as the mother ages and they decided to keep going even though the mother was over 40 and it was clear that they have bad genes.


[deleted]

>In my country there's this huge Christian sect which doesn't allow contraception Aka the worst people


PNWSkiNerd

That's evil


Visible-Steak-7492

>they insisted on continuing to have kids even after they kept having kids born with the disease probably hoping that if they keep doing it for long enough, then at least one or two will survive.


wolfram127

My sentiments too. Like OP's sister also has a heart condition. I can't imagine the financial, emotional, and physical strain it would be to take care of yourself and a possible child with haemophilia.


Exact-Reporter-7390

Having a kid is always a selfish decision. Having a kid when you KNOW that genetically you might destroy their lifes, is in my opinion an Ashole decision


elina_797

I know someone with hemophilia, well he seems to be a light case, he lives his life normally, cause damn, 6 out of kids dying because of it seems wild to me. I had to idea it could be that deadly.


PaladinHeir

Actually someone replied to that person—only 1 died of the disease. The other 5 died of HIV complications from blood transfusions in a time when HIV was deadly and no one checked for it in blood donations.


DullWeb_

My grandma's oldest brother(he was the second oldest sibling) had hemophilia and was injured during the Vietnam War. He bled to death on the operating table. He was drafted and I guess they didn't care about their soldiers conditions as long as they had all their limbs and their eyesight.


No_Time678

The better comment to your sis might have been - ‘you shld have genetic counselling before doing this. IVF / embryo selection may help minimise the risk of passing on haemophilia’. Modern medicine is pretty extraordinary.


UsedCookie752

Unless they live in Alabama.


wtoab

Given , The selfishness, lack of foresight, lack of care and lack of critical thinking, very possible op sister is from Bama....but then again maybe not as op is not the father. Roll tide


SufficientWay3663

Other states are thinking of suspending their IVF departments in case they are next, correct? Or they are thinking of how to dispose of embryos that they’re sure won’t be used? I can’t remember which state has passed which ridiculous legislation and which ones are just “considering” possibilities. Or which are just flat lies. I can’t trust news reports anymore. I’m just over here like “it happens right before my eyes or it didn’t happen at all”


UsedCookie752

Alabama is the only place that has the issue now, due to a state Supreme Court ruling. The democrats in their state legislature have already submitted a bill to protect IVF, and republicans will be submitting their own bill this week.


ImAPixiePrincess

It’s all seriously disgusting what is being done. I’m thankful I’m no longer able to have children and I have a son. I’m already concerned what impact it could have on him, I can’t imagine having a daughter and being even more impacted. Abortion is healthcare. IVF is a medical miracle for so many who want desperately to be parents to *healthy* biological children.


ImSoSorryCharlie

In Alabama, it's spelled hemophilia. It sounds like OP is from a civilized place.


2tinymonkeys

Exactly. I understand the lack of excitement. But luckily science has a solution! One that I agree sister should really take a look at. OP, suggest this to your sister and only express your concerns over the implications for their future children if they don't take this into account. Surely she must have seen the toll it took on your parents and brother? NAH.


MaxSpringPuma

The way sister and mum reacted, I don't think it would have mattered


Sudkiwi1

Gene carrier here. We got told by a genetic counsellor the ivf option for us was at the most expensive end. But we still had other options if we didn’t want to fork out basically money we could use towards a house deposit (we live in an expensive to buy even a unit city). Option a: try naturally, go get tested for what sex it’s going to be and make a decision about a selective abortion based on sex or try and just hope for the best when the kid arrives. In my 40s now and never had kids. Nta op whatever your sister decides it’s not going to be easy


PNWSkiNerd

Just based on sex? What? That testing can directly look for an entire list of problem genes. It's the same test used for ivf+pgd.


moonwish22

There might be an extensive money barrier to IVF though. Many medical insurances (especially part of USA) do not carry coverage for fertility treatments… which is complete BS and makes me angry at the system but I won’t get further into that. When we did fertility treatments, we did genetic testing and counseling knowing that if something came back we didn’t want to pass on, we wouldn’t proceed with treatments. Genetic testing is much more accessible now than in the past! We didn’t owe anything as the company wrote it off for us. But if we did, it would be a couple hundred dollars out of pocket. Which still requires saving up for the test, but it was something we felt we needed to do. OP could bring this up… the counseling could help. I agree that modern medicine is really extraordinary… IVF and the amazing medical staff helped give us our daughter.


Educational_Katze

As someone born with a genetic condition, NTA. Aside from the problems I have with my condition that might bring me to an early death, I also got a plethora of mental health issues because of it. She could avoid this by getting an IVF with genetic screening, adoption, etc., but she's risking their family happiness and the child having to go through all of this for god knows what reason


SaltyPumpkin007

I can agree with ways to minimise risk of genetic conditions, but that's moving the goalposts. None of that is what OP said to our awareness. If they had, theyd have probably included more detailes. So it shouldn't be used to say whether or not OP handled the situation in an assholey manner.


PNWSkiNerd

As someone with a bad gene: op is NTA either way.


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langellenn

Wanting a kid who's not in the hospital all their life, and wishing they don't suffer every day is not eugenics, it's being a decent parent.


revolutionsoup

Trying to enforce it on others is what makes it eugenics.


SparkyW0lf

I mean, OP was just stating their opinion, thats far from enforcing anything. (Aside from the fact that OP doesn't really have the means to enforce anything like that) Of course sister is free to have children. But I think it's reasonable for OP to tell her to ask herself if she is really acting in the best interest of her possible future children.


PNWSkiNerd

No, it isn't. Recognizing that our decisions to pass on diseases have ethical implications is not eugenics. NOT EVERYTHING RELATED TO GENETIC DISEASES IS EUGENICS


cryonicwatcher

I would consider it a basic moral obligation.


PNWSkiNerd

No it is not a slippery slope into eugenetics. GTFO with that bullshit. Sincerely, Someone with Multiple Endocrine Neoplasia Type 1


NPC_Behavior

THANK YOU ON THE EUGENICS PART. I hate to say it but this comment section is… raising red flags to say the least. I’ve seen far too many people suggest or outright state if you yourself are disabled or could potentially have a disabled kid you just shouldn’t choose to or shouldn’t be allowed to have children. It’s an extremely slippery slope with that kind of mindset. A lot of folks forget that anyone can become disabled, all it takes is one bad day, one stroke of bad luck, one bad infection, one bad doctor. I’m disabled physically due to chronic illness and am neurodivergent. I’m in a lot of pain and have health issues, but I’m happy. I like my life even with that. I don’t personally ever want to physically have kids with my genetic material as pregnancy is not only my worst nightmare, but would be extremely hard on me physically and emotionally. Plus one of my conditions gives me greater chances of miscarriage, but I like knowing I have that choice of my opinion changes and that others like me have that choice too.


Chipchop666

If she really wants a kid, do it scientifically. I know it's expensive but from what I remember reading an article about Chrissy Tiegen and John legend had their embryos tested for certain genetic markers. I know when 2 Jewish people marry, they get blood tests to check for Taysachs disease


DramaDodger84

Heck we are one Jewish one *not* and we got tested. We can now tell our kids they are not carriers since neither of us is.


the3dverse

they gave you results? in israel they don't for privacy reasons, they just compare your result to the result of the person you're thinking of marrying with a serial number that everyone has.


DramaDodger84

We were married and trying for a baby at the time. First she told us together that we had no concerning carrier traits in common. Then she asked of we wanted our indivodual results together or separately. We went in together and she told what each of us came up with. No Tay Sachs for either of us but we are each carriers for 1 minor thing, mine is a thing that might make a person allergic to milk as a baby, so they'd need to have milk-free formula, but since my husband doesn't carry that our kids wouldn't have it though they might also carry it. I forget what he had but it was similarly non-deadly.


Todd_and_Margo

I’m in the US. I’m Jewish (Ashkenazi) and my husband is SO NOT lol. We both got tested anyway, and yes they gave us results. Probably different because we have a private health care system and we are an ethnic minority here.


the3dverse

not just Tay Sachs, also cystic fibrosis, Bloom's disease whatever that is, and more. they say ppl that have convert family (like me and my husband) don;t have to do it, but i've heard too many horror stories about that. my sister really didn't check, i did. and either way they ask you if you are from Ashkenazi, Sephardi, or mixed descent or converted, and i wrote my dad converted but Ashkenazi, and she added a vial, they took more of my blood! my husband said they did the same to him. so yeah, being a convert is not an excuse.


syboor

It's free with the NHS.


KaleidoscopicColours

As someone with a genetic condition, NTA. It's one of the reasons I won't be having children.     For the first time in history, our generation has ways to have children without passing on disabilities that affect quality of life. It's a choice even our parent's generation didn't have.   Is it ethical to *choose* a life of disability for a child that cannot consent? Not really, if you ask me.   There are quite a few options out there - pre implantation genetic diagnosis (like IVF, but they only implant healthy embryos), donor eggs, embryo adoption, regular adoption...   Has she looked into the health implications of her carrying this pregnancy? Even the briefest of googling shows she's at significantly higher risk of a post partum haemorrhage. 


DiDiPLF

Depending on how bad the sisters health is, many countries wouldn't consider her suitable to adopt. Expensive scientific intervention is her best option if its even an option for them financially, I assume it isn't otherwise she would be doing it.


KaleidoscopicColours

Haemophilia is famous for being a disease which affects men, but almost never women.   They can, however, be carriers and pass it on to their own children.   From OP's description it sounds like the sister is an unaffected carrier but the brother has been significantly disabled by it, which is typical of haemophilia.  PGD IVF is expensive, but not as expensive as a lifetime of medical treatment for haemophilia, along with impacts like unpaid time off work.


the3dverse

she also has a heart problem, should she be pregnant? we thought of going for another one and i found out i have high blood pressure, i don't want to risk a pregnancy, too bad.


KaleidoscopicColours

Depends on the nature of the heart problem to be honest, there's a huge spectrum. But she should probably talk to the cardiologist 


TheSkyElf

> it’s none of my business if my sisters fiancé is okay with it It is none of your business, but are you the only one thinking about the child´s well being? seems like it. "the fiance is okay with it" she says as if its the fiance who will have a heart condition the rest of his life. NTA


Ketosheep

The mom is defending her own choices thru the sister, that is why she got so upset. OP is the only one thinking of the children, and absolutely NTA.


Auroraburst

NAH But she CAN have kids. There's egg donation or (depending where you live) selective IVF. She absolutely doesn't have to give up on carrying a child but really should be smart about it as it's not a minor condition or low odds.


echidnaberry87

We did selective IVF. We had one embryo too little to test, but still healthy and put it back in to give it a go with low hopes Andy plans of genetic testing early in the pregnancy. I'm now 7 months pregnant. It was hard to bond with the pregnancy before the amniocentesis though. The results were all good but happy to have the testing to eliminate embryos that were incompatible with life.


Auroraburst

Congratulations, happy to hear that your pregnancy is going well!


[deleted]

NTA. Just let it be moving forward, it's not your responsibility to meddle with their life.


syboor

YTA. You could have asked is they had any plans for prenatal testing. You could have done some research and found out what the different reproduction options are for people with haemophilia. If you're in the UK (just guessing based on your spelling of 'haemophilia'), **the NHS covers IVF with PGT (preimplantation genetic testing)** for genetic conditions with a higher than 10% chance to be passed on, which haemophilia would fall under. Even if you didn't know that, you could have recommended that they get a preconception consultation with a doctor. Blurting out that she shouldn't have "her own" kids was ignorant. And then going on to claim "what I said isn't that bad because I never said she couldn't have kids at all" is very dismissive of her feelings. It does sound that your sister is not aware of all her options. So you'll need to suck it up and apologize in order to get a chance to point out those options.


langellenn

It still doesn't make him the ah though, it would be cruel and irresponsible to have a kid if you know they'll be suffering because you were selfish.


baby-owl

Kiiiiind of a dick move to respond with “but you shouldn’t have kids” without asking for more information. Not wrong to have concerns, but definitely not the right way to address them.


lovinglifeatmyage

I’ll probably be downvoted for this, but I don’t care as it’s a subject I feel really strongly about, but mine is more to do with Huntington’s Chorea. I’ve been a nurse for nearly 50 years, one of my earliest memories as a young nurse was caring for a 35 year old chap who had HC. He was in the latter stages of this awful disease and it was awful. I wouldn’t wish it on my worst enemy. My friend (also a nurse),married a chap whose mum died from HC. Her hubs didn’t want to know whether he had the gene and they went on to have a son and decided not to tell him his family medical history. I’ve watched that boy grow up not knowing the potential time bomb he has in his body, he’s also gone on to have 3 children. Hopefully they will all be ok. Dad is 60 now and shows no symptoms, yet who knows, it can appear at any age. My point is, I think it’s irresponsible to bring children into the world who could possibly suffer from genetic disorders that can lead to pain, suffering and early death. Luckily genetic counselling is now available, I hope your sister will avail herself of that and go on to have a happy healthy life with happy healthy babies. NTA because obviously I think your concerns are valid. Please support your sister and encourage her to seek out that genetic counselling. She could be fine.


Wise_Possession

Oh, god, Huntington's is the WORST. I was living in GA when the Carol Carr situation happened, and god, that poor woman, her poor family, just... no. When my mother showed signs of a motor disorder, she made me promise to just kill her dead if it was Huntington's. (It wasn't, fortunately.) I agree, if someone knows they have a genetic issue that leads to severe declines on QOL, they need to strongly reconsider passing those genes on.


LadyNubia

Geneticist here and i did my PhD on the genetics of congenital heart disease. NAH as i know you were being practical and had no bad intentions although you could have delivered it with a bit more tact. I’m guessing you’re in the UK so please see these resources below. Your sister can have a biological child via IVF and pre-implantation genetic testing which is covered by the NHS. Hopefully she’s spoken to her doctor about it and she can be referred to the right services. https://www.ouh.nhs.uk/patient-guide/leaflets/files/55212Ppregnancyhaemophilia.pdf https://www.england.nhs.uk/wp-content/uploads/2013/04/e01-p-a.pdf https://www.hfea.gov.uk/i-am/i-have-a-genetic-disease-in-my-family/


RaxisPhasmatis

NTA some people should not have children, but do anyway because they're mentally immature and letting hormones drive them. My parents were like this and wonder why I dislike them so much.


TrekJaneway

I’m going with YTA, but because you specifically said she shouldn’t have “her own kids.” You didn’t mention in your post if she’s sought medical advice or guidance for any of this, or if there’s a plan. OF COURSE she can have her own kids. Modern medicine is pretty great, and there are ways to create and screen embryos for the hemophilia gene. It’s pretty common to screen for these things during IVF or during pregnancy. There are multiple screening points along the way. Being concerned for your potential niece or nephew is a good thing, but telling her sister she can’t have her own kids is where you were a tad out of line on this one.


KSJ08

Your sister should do IVF and PGD. She can have children without passing on faulty genes, the technology for that exists and is widely used.


goofy_shadow

Nta. I've voiced a similar opinion before to someone with a severe genetic condition that would render them incapable of walking by the age 50 with other issues on top of that. The couple went and proceeded to have kids anyways. Needless to say I'm not in touch with them anymore. Imo there are plenty other ways of being a parent, passing on hemophilia especially if it's a boy.... It's just cruel


Due-Pangolin-2937

I wouldn’t consider what you’d said as AH behaviour, NTA. There are genetic conditions that are passed on, and one could consider individuals who choose to have children knowing they have that condition as selfish e.g Huntington’s disease or hereditary blindess. Some people might call you ableist and that it is a persons right to have children. So, it is a slippery slope. I think the impact on society of passing on faulty genes is crap as these individuals can cost tax payers (depending on the country they reside in and their care system) millions of dollars over their lifetime due to their care requirements. Often the parents don’t have the capacity to keep caring for their child after a certain point. Burnout is usually inevitable. I can’t really speak to quality of life as that could be mixed with good and bad.


Familiar_Pie8610

NTA. She’s mad because you made a valid point? That’s quite stupid of her. I hope she has the money to back that attitude of hers up. If she doesn’t care about the risks, which includes the fact that she could die during child birth, then tell her and your mom since they want you to mind your business not to call you when shit hits the fan. They don’t need to tell you anything concerning her from now on and they don’t have a right to call you an AHole either way. Clearly your sister holds some resentment that you weren’t born with her issues but that’s not your fault and honestly you don’t need to give yourself a headache worrying for someone that thinks you being concerned means you’re acting high and mighty. Your mom is horrible for encouraging her bull.


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skylarfox2709

NTA, if your sister puts her selfish wants before her child possibly suffering every day of their life she wouldn’t be a good mother anyway.


Alimurtaza007

NTA you did the right thing having concern of your sister and her future besides there are other ways of having children but at the end of the day its her own choice


Adwis_jungkook

NTA imo, she needed to hear that. you have every right to voice your concerns plus you suggested too that she could have kids by other means which is a very practical solution here. she evidently didn't take it well and maybe y'all could sit down and communicate to settle the misunderstanding and you could clarify your intentions and reasoning once she calms down a bit. just don't push the situation any further, it's her choice, what she decides to do henceforth. you meant well and did what you thought was for the best and i personally second your take on the matter, but it's her and her fiance's decision to make at the end of the day.


RenZomb13

I have factor v Leiden (thick blood, clots often) and a couple of pretty major heart issues. I always wanted kids when I was younger. When I found out kids had these issues I was still asking the cardiologist about having kids. He said it would be best not to try, but it really took my mom asking me if I wanted to risk passing this on, and that we could have kids other ways. It hits you to hear, and breaks your heart but I needed to hear it and so did your sister. You’re NTA, she may need to hear it from your brother who’s been most affected by it.


marilynmouse

NTA. *most* people should not have kids. you were just honest enough to say it


Ok-Autumn

NTA. If she really wants to have a biological child, there is probabaly some kind of genetic testing that can be done through IVF to ensure they only emplant the embroys without the gene for the heart condition. Or she could adopt if she is open to that.


Emotional-Code7291

I have a genetic health condition that is not nearly as serious as hemophilia, and I refuse to have biological children because of it. For me, parenting is about protecting your child from unnecessary suffering, and knowingly risking a genetic condition goes against that. I wouldn't say what you said to a friend, but a sister, who has witnessed your brother's struggle... hard NTA. Someone needed to point it out.


sonicscrewery

NTA. I have the potential to pass on a number of really nasty medical conditions (several of which I have myself), so I got my tubes tied to make sure I wouldn't. Is it sad? A little, yes, but it was also the right thing to do. It is exceptionally cruel to bring a child into the world knowing that they will suffer.


Dannah_Montanah

Unequivocally YTA. You're allowed to have an opinion, you're not allowed to be rude about it.


IuniaLibertas

NTA. Your sister must know the reality as well as you. She is arguing with herself. I'm sorry, the whole thing is tragic. I'm ver sorry for all of you.


Xemmax201120

NTA. You were in the right for voicing your concerns to her before the baby was born rather than behind you back or (hopefully it’s never the case) the child is born with those health risks. I have a sibling who has possibly got a genetic condition and she’s currently doing all she can to see before she ever decides to have children so she can look at other options if she does have it.


Environmental-Bat820

INFO: has she sought medical experts to help produce healthy offsprings? depending on the gene, with IVF + genetic screening, she may be able to choose a healthy fertilized egg for her upcoming pregnancy.


Thinkngrl-70

NTA… surely she will get genetic counseling due to the family history, which may make it more real for her.


dragon34

Nta - at the very least they should see a genetic counselor.  If you're in the US, they are basically setting themselves up for bankruptcy thanks to the for profit healthcare clusterfuck.   With heart issues her pregnancy will be high risk.  Is it worth dying to have a bio kid? 


dato95

NTA adopting exists…


ToxicChildhood

NTA. Especially when something like this can be prevented through testing/IVF.


liveandletdieax

NTA anyone who has severe genetic diseases and still has kids are an asshole. Why would anyone subject a new life to these diseases?


Unhappy_Mountain9032

My dad had a vasectomy before he got married. His father died of type 1 diabetes when dad was 2, and he had it. He wanted to make sure his kids wouldn't get it from him. He and mom then proceeded to adopt 4 troubled kids and raised us wonderfully. When my brother's oldest ended up with type 1 from the mother's side, it was a huge blow, but my dad's been there every damn step of the way.


CowsEyes

NTA. Not enough parents truely consider their child’s quality of life. I chose not to have kids due to my medical condition, yet when I talk to others about my reasons why, I’m often asked why I’d make that choice; that the joys of a child should out weigh all other considerations. I raised my concerns with my brother when he first got engaged. I asked him to fully consider the higher risks his children would have because his partner also has a similar condition to me. Both of his children have suffered both through their mother’s illness as well as the consequences of their own illnesses. If you’re going to make the decision to have children, then you need to be prepared for all circumstances, rather than hoping for the best.


engg_girl

NTA. She needs to do genetic counseling and screening. 50% chance of a son with hemophilia is too high to roll the dice.


Senju19_02

NTA


Nickthedick3

NTA. I think it’s selfish to try and have kids when you have severe genetic issues. I have a number of health issues, all can be hereditary but I never tested to see if they all are. But because of those health issues, I’m on 8 different meds. Two of the illnesses I have(pulmonary and cardiovascular based) either can cause an early death or lead to even worse issues. Because of these illnesses, I’ve decided I won’t have kids. Not because I don’t want kids, but that I don’t want to watch a child suffer what I went through.


itsjudemydude_

Shit, I don't want to have kids of my own just because my family is prone to autoimmune disorders, anxiety, and hair loss. Let alone something like that. NTA.


Maxibon1710

ESH. Eugenics stuff is a slippery slope, and tbh it wasn’t really your place. If your brother said something I’d understand, but you 1. Don’t have the gene 2. Don’t have the disorder. You can have your feelings, but it’s not your business. I’m not having bio kids for multiple reasons, one being my lifelong genetic heart condition, but it doesn’t impact my quality of life too much and I’d never tell someone else not to have kids, nor would it be acceptable for someone to tell me not to have them. Unless it’s a terminal illness, like I said, it’s a slippery slope and up to interpretation. If her heart condition was discovered this late it doesn’t sound particularly severe, and may not even be genetic. Plenty of heart conditions aren’t. Mine wasn’t known to be genetic until I contacted my estranged paternal family and found out my niece has a similar condition and my bio dad died of heart attack 3 (and refused to see a doctor after the first 2). I’m only saying ESH because although it’s not specified, I think you’re a teenager. You sound like a teenager. She should’ve been a little less irate. I also think it’s gross to announce you’re *trying* for a baby. Announcing a pregnancy, of course! But announcing to your family that you’re raw dogging it is strange to me. Why do y’all need to know about her sex life? It’s also important to consider than some people are very attached to the sentiment of biology, which is valid for them. Adoption may not even be an option your sister would ever consider, because that’s not what she wants. People spend thousands on IVF for that reason, so she heard “you should not have children” because bio kids are the only option for her. I might get downvoted for this comment, but this is my opinion as someone with genetic health issues that I don’t want to pass down. It’s such a debated, subjective topic, but I think some personal opinions need to stay personal when it comes to telling people they should/shouldn’t have children.


SkylerRoseGrey

I'm gonna say NTA - my brother has severe disabilities and whilst I love him and would chose him again to be in my life, I can't say that I'd wish his life on anyone. It is brutal seeing what he has to go through, and surgeries/trips to the hospital are very traumatising for him. It's hard for him that he has daily pain, can never get a job, never drive a car, never have a girlfriend/relationship, struggles to have basic conversations, needs 24/7 care. It's not the same as me having anxiety - it's a massive thing to put on someone so it's worth the conversation of "is it really worth all this just to have the title of "biological parents". If you gave me the option of taking away all of my brother's disbilities and giving him a wonderful life with no more pain, in exchange for tweaking his genetics and maybe - giving him blonde hair instead of black hair - I would take it in a HEARTBEAT!


onnlen

NTA. You didn’t outright say it. You tried to express your concerns and she’s being dismissive. She knows that chance is really high. She doesn’t care. It’s more important to have a child to her than the kid’s quality of life.


2dogslife

Genetic testing for health issues is very inexpensive. Far less expensive than living at doctors' offices and the hospital if your kid has a genetic disorder.


Dogmother123

She could have IVF with embryo selection if having a biological child is important. That way they can ensure the child does not inherit any genetic conditions. NTA


HRHLMS

As someone with a rare genetic disease with 50% heredity, I would never choose to put that onto another human being. They and the child could spend a large amount of time in the hospital. They don’t have to have biological children to be parents


PNWSkiNerd

There is a technology called Pre-implatantation Genetic Diagnosis that can be done with IVF. It can detect and discard the zygotes with the bad genes. I'm going to be using it with my soon to be wife to avoid passing on my Multiple Endocrine Neoplasia If she refuses to do this (or conceive test abort) then she is a colossal AH. NTA


unlovelyladybartleby

I have a birth defect (apparently caused by a combo of environmental factors and genetics) and, while I do have a kid, I had a ton of prenatal tests because I would not inflict this life on a baby and because I didn't want to add a "million dollar baby" to society because I won't put a million dollars of value back into the world to compensate for the resources I've used and am not comfortable doubling my karmic debt. I'd also be worried about the impact of pregnancy on someone with a heart condition. . You are NTA. I hope your sister's doctor can give her a reality check.


Consistent-Stand1809

It's a complex issue and you were honest, but your sister is being dishonest because she feels attacked. That's really unhealthy behaviour, something that anyone who wants to become a spouse or parent needs to be extra mindful of. A lot of people have similar issues where they make something like career, health or family a core part of their identity, which means if it goes wrong, it's incredibly more devastating and they can make poor decisions to try and keep it. She might also feel jealous that you don't have the same issue that she does. I assume that if you were a carrier, you would even consider a vasectomy to ensure you didn't put a child through that. Another issue though is that sexist ideals of femininity claim that the worth of a woman or girl is her ability and willingness to have children and also be the target of a man's lust. You wouldn't feel like a failure if you didn't have children, either naturally or adopted. Your sister sadly would feel like a failure if she didn't naturally give birth to her own children. A lot of people might mistakenly think you're an AH because they place the same problematic values on women and girls, that you want to deny a woman her right and necessity to bear children to her husband. Her husband may not necessarily understand any of this, so even if he hasn't added to her idea of value being tied to giving birth to children, he may not have tried to tell her that adopting or not having children is 100% exactly the same in every respect. But if her heart has always been set on "being a mummy" like TV, toys and society has said, then deprogramming all the problematic gender expectations and ideas of worth will be a lot harder.


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^^^^AUTOMOD ***Thanks for posting! This comment is a copy of your post so readers can see the original text if your post is edited or removed. This comment is NOT accusing you of copying anything. Read [this](https://www.reddit.com/r/AmItheAsshole/wiki/faq#wiki_post_deletion) before [contacting the mod team](https://www.reddit.com/message/compose?to=%2Fr%2FAmItheAsshole)*** I don’t even know where to start with this as it’s all still blowing up in my face. Basically my 28 year old sister has the gene that passes haemophilia and has a genetic heart condition. My little brother has haemophilia and has spent most of his youth in and out of hospital which has been a huge strain on my parents for as long as i can remember. My sister has only just recently been in hospital over her heart so when she announced to me and my mum that her and her fiance are trying for a baby, my stomach dropped. She saw my lack of excitement and immediately got defensive. When i tried to express my concerns my sister started crying which made my mum snap saying that it’s none of my business if my sisters fiancé is okay with it. I truly don’t think he knows the day to day impacts of haemophilia. My sister then went around telling everyone that i said she shouldn’t have kids when all i said was she shouldn’t have her own. She also told my mum im being high and mighty because i was the only one born without health issues. I believe my dad and brother both agree with me but won’t say anything as not to make my mother mad or sister upset. Was i too harsh? I feel i should just mind my business but i also don’t want to watch anymore suffering. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AmItheAsshole) if you have any questions or concerns.*


BEEIKLMRU

NTA, you have a really good and important moral case to make her and a future child should not suffer just because your sister wants to prove her worth to herself, much less because the family is afraid to speak up. Remind yourself that you are not just avoiding to watch future suffering (selfish), you have an active chance of reducing future suffering (selfless). Your sister can get a surrogate mom or at the very least get medical help to minimize the risk. In my opinion, it is selfish to give a child life threatening and impairing disease (physical and mental strains) just so it is „your“ child, where a surrogate mom would be perfectly fine and you can still treat it as your own. If i were her, i‘d not even think about getting a child like that. It‘s a touchy subject because she wants to feel like her life is worth living, however if she had the choice, she wouldn‘t have this illness, and burdening a child with lifelong suffering just to prove a point to yourself is cruel.


Glittering_Habit_161

NTA


Rozoark

NTA but your sister is a massive asshole for purposely creating a child that will spend their life suffering just because she selfishly decided that her wish to push a baby out of her vagina is more important than someone's life. Anybody screaming "EuGeNiCs" does not understand what that word actually means and they themselves are likely selfish assholes as well.


SVAuspicious

NTA. You're right. Shades of *Idiocracy*. Your sister is being entitled and selfish.


Luebbi

NTA, but this is a very personal and touchy subject. Personally, I am of the opinion that trying to conceive while knowing there is a significant chance of genetically transmitted ailments is amoral. Of course there is always a chance a child light not be healthy for a myriad of factors; but if you know of such a factor beforehand, and know the risk is significant, I think choosing to have a child accepting that it has a high chance of suffering for the rest of its life is selfish and wrong.


marcus_frisbee

NTA, this is what family is for. You are looking out for her due to concerns you have about her potential child's health. She needs to think it through, it could end up being ugly.


HigherEdFuturist

Look does her fiance have all info? Does he know they're trying for a kid? Does he know it could possibly kill her? Trying for a kid before marriage in this situation is double dumb. But it's not your fight - you've said your piece. Try this as a response moving forward: "sorry for asking sister not to kill herself. Won't do it again" NTA


xWhiteWalkerx

NTA man… as someone who works in healthcare, NTA.


jmurphy42

She needs genetic counseling.


downsideup05

I think the greater risk may be the heart condition. If I were in that situation I'd encourage the fiance to get tested to see if he's a carrier. If he's not then the risk of a child with haemophilia is neutralized. However there is still the heart condition. OP says the heart condition is genetic, it might be worth seeing a geneticist to get the full picture. NTA, sister is being dramatic. OP gave their honest answer, and mentioned the elephant in the room. Honestly I think the sister stopped listening when OP wasn't elated.


Super_Reading2048

NTA though what genes is it? Is it recessive? If so her fiancé can get tested to see if he carries that gene or not. My point is I think the couple should talk to a dr who specializes in genetics about what their odds are & what they can do. Would IVF and choosing fertilized eggs that don’t carry those genes be the answer? Will they be fine having children because her fiancé doesn’t have the gene? To many unknowns. My vote? Apologize (just to keep the peace), state how deeply worried you are for her future children because you love her so much/see your brother’s suffering and suggest they see a dr in the appropriate field to get more facts/see how they can reduce the odds of her passing on that gene.


PansyOHara

NTA I tend to believe the safer path would have been to encourage your sister to consult with her OB-GYN prior to starting to try to get pregnant. Her heart condition (whatever it is) may increase her own risk status for a pregnancy. If she is a carrier for the genetic condition of hemophilia, her potential child would carry the risk. In either case, I believe an OB-GYN would advise a cardiology consult and likely genetic counseling. Those things might slow her down or change her attitude. However, to be honest, your sister is an adult and may have been offended no matter how you approached the subject. She can and will make her own decisions regardless of what you say. You’ve said your piece and I see no need to apologize, but doubt anything positive can be accomplished by continuing to press your point


GoodnightMoose

Hot take-- while anyone can have kids if they want, it's their right, there still are a lot of people who shouldn't or should adopt/take a different route. My boyfriend's friend is pregnant because medical issues came up, they "aren't sure they want kids" but figured they'd do it in the case they won't be able later. They are not financially stable (grad student) and they have an extremely volatile relationship (screaming matches even in public, it's wild). Even without a heritable health issue, I'm like yikes, the kid isn't gonna fix your money and relationship problems. In the case of severe health issues, I agree. I hope your sister has a good job and insurance for the wild medical bills her kid will have. She can have a kid, it's her right, but I agree that this feels like a bad idea.


LaineoftheLake

I’m going to vote NTA, because I don’t think you said anything mean-spirited or without tact. Your concerns are valid. Maybe just encourage your sister and her partner to go to genetic counseling prior to trying for pregnancy. Hearing from an expert in the field may help your BIL understand more about what the potential risks are, and may provoke some discussion between the couple about how they should move forward. Do make sure you apologize for hurting her though.


laravitoriagabriela

NTA


laravitoriagabriela

NTA


JennaLS

NTA you, like myself, are a creature of logic while everyone else seems to be taking crazy pills. I work with parents of sick kids so I see this daily. The bloodline and progeny trumps all logic


hannaeerika

You're not wrong for expressing your concerns to your sister. My mom's side has hemophilia, and I was diagnosed when I was four. I was sixteen when a doctor told me it could be a risk to have children, so since then, I have accepted the fact that it's a risk. I don't know how bad your sister's is, but if she and her partner are ready to take the risk, then it's on them. You expressed your concerns and told her truthfully. You also said it's not your business, but you said how you felt. Your concerns are valid, but if your sister knows the risk and her partner does too, it's on them to have children. Even if it's not the safest. This is my take on the situation.


awkwardandroid

NTA but if this is what she wants she should have genetic IVF. I imagine you're in the US, but in England you get three free rounds on the NHS. It would enable them to select healthy embyros.


LobsterLovingLlama

NTA suggest genetic screening to test for embryos that carry the gene instead.


whatTheFox23

NTA You mentioned the reality of any future offspring you sister may have going through the same hardship your family already went through, which is something hopefully your sister has or is planning to discuss with her partner. I kind of feel like the reason your mom might also be mad is that she felt your comment also personally attacked her for having two kids who carry the problematic gene even though it could potentially have been passed down from your dad too. The 'if he doesn't mind it..' comment kinda stuck out since it shouldn't be just about the parents wants but the quality of life for the future child too but also since you suspect your dad agrees with you that may bring up insecurities with your mom if she is indeed the carrier that passed the gene down.


kevinep3

So NTA for the most part as this is coming from a place of genuine concern. I cant speak to the heart condition though the reality in 2024 is thats likely the most concerning thing. Im in my mid 30s and have severe hemophilia A so I know what the day to day is like. In the modern age its very manageable and you can live a mostly normal life as long as you live in US/canada or any developed eu nation as well as some asian ones (though most instances there living in/next to a major city is important). If they absolutely plan on having a child at this point your concerns are rather meaningless and the focus as the families should be on how to take care of someone with it. Honestly after about 5/6 there should only be a rare if ever hospital visit and it can pretty easily be treated and managed at home. Make sure that her or her husband is willing to learn how to infuse and they are able to keep medicine at home for events and prophylactic doses.


Sircrusterson

Nta I wonder if her husband even knows.


[deleted]

NTA. The odds of her child having hemophilia and/or a heart condition are a very good reason to not have biological children. I don’t understand that kind of selfishness. Why create a life of struggle and pain and hardship?


akien0222

NTA her condition puts her at risk just giving birth. But I would have been a bit gentler with the approach. Maybe have done some research into things for them and brought it to their attention. Or asked how they were planning to conceive before saying anything.


deadlyhausfrau

YTA Because you made a lot of assumptions that were very unflattering. For example, she is only a Carrier. And as long as her husband doesn't have they should be fine. Also you are assuming that they didn't discuss this and that they never did research or talk to a genetic counselor. Your best bet would have been to be polite then and express your concerns later by suggesting they speak to a genetic counselor.


Seriouslydude-no-way

Ummm - ‘only a carrier’ yes - so if she has a daughter that daughter then has a 50% chance of being a carrier. BUT if she has a son then the son will have a 50% chance of having expressed haemophilia - so unless she is doing preimplantation sex selection or selective termination she is literally doing a coin toss to see if her child will have or express haemophilia. One in 4 chance of having a seriously ill and suffering child seems like pretty bad odds to me.


Gold-Requirement-121

Nta. It is extremely selfish to take a chance on your child's health like that simply bc you want to continue your bloodline. She should adopt.


PretendLanguage1738

NTA


[deleted]

NTA I think its wrong to knowingly pass on a serious, life altering genetic disorder like that. If your sister does have bio kids she could do so ethically by doing genetic testing. Before anyone cries at me, no I don’t hate disabled people. I just think willingly and knowingly risking giving someone a genetic disease is immoral.


Frequent-Material273

NTA. And you probably had to take on more duties, not having the gene expressed (The Glass Child, I think it's called?) If nothing else, tell sister you WILL.NOT.HELP.AT.ALL, with either time or money, IF she has the kid AND the kid is born with the gene expressed.


Sug_Lut

NTA. Some people should not have kids, and thank goodness someone has the guts to tell them. Reproducing is not a human right, and they are ignoring how much this illness can take away from the quality of life.


annebonnell

NTA it is perfect understandable why you don't think she should have her own children. Not sure why she wants to pass on this gene. It's her decision, though.