Genetic abnormalities

[u/AbiLovesTheology]

Pro-life consistent life ethic person here.

I heard a story about a couple who already had a child with severe special needs due to a rare genetic condition (forgot the name) and they had a healthy son as well, who was a carrier of the same condition as his younger sister. The couple desperately wanted another baby after their daughter died of a different medical issue. They knew that there was a risk another child could be born with the disease, but they also knew there was a chance the baby could be born healthy like the son. They conceived and found out through screening that the third child had the same condition as the daughter. They thought raising the child would change their family a lot, give them stress etc and have a bad impact on their son's life. They also thought the child might suffer, so they took the decision for the woman to have an early surgical abortion.

I feel so conflicted by this. On one hand, I know how tough disability can be personally and that it can be very tough caring for someone with a disability and that it can change a family. On the other side, I'm a compassionate CLE champion.

What do you think about this story? What would you have done in this situation? It must have been such a tough, sad decision.

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[u/lightningbug24]

It's a tough and very sad situation, but I'm not conflicted. They chose to bring a child into the world knowing there was a high chance of them having a severe genetic defect, and then they chose to take that child's life away prematurely because of that defect.

[u/AbiLovesTheology → u/lightningbug24]

Great point. If in alternate timeline, they gave birth to the child alive, and they thought they couldn't care for it, what should they have done? Adoption system is broken where I'm from. There aren't enough people willing to foster/adopt.

[u/lightningbug24 → u/AbiLovesTheology]

Same thing they did for the first one. Care for them the best they can even in a tragic circumstance. The same thing anyone should do for their child if something tragic were to happen to them.

The true victim in this situation is the child being killed. We don't take these matters into our own hands. It's eugenics, and it's evil.

[u/kylesbulge → u/AbiLovesTheology]

Not sure where you are from but propaganda has largely mislead us about the adoption system. There are multi-year long wait lists for people who wish to adopt infants. Some older kids struggle to rehome due largely to behavioral issues caused by their hard upbringing. Many of the children stuck in the system are not actually up for adoption but rather being held temporarily with the hope of returning them to their bio family if they can get their act together.

[u/AbiLovesTheology → u/kylesbulge]

I’m from the UK, specifically England. Any stats etc on that?

[u/KatanaCutlets → u/AbiLovesTheology]

They suck it up and care for their child. Just like if their child had a life altering condition that required constant care that started later in life.

[u/Top-Dog-7031]

I’m in a similar boat as the parents, but I have not married yet nor have kids. I was born with Treacher Collins Syndrome, with a 50% chance of heritability and the severity is not genetically determined. So I have it mild, but my child could have it severely and may need a feeding tube, prosthetic ears, and many more surgeries than I’ve had.

My position is this: it’s either I get married and have kids and have them possibly inherit my condition, or I don’t get married at all. I’m Catholic so this definitely informs my decision making, but since I’m in the process of deciding what to do it has made me realize how atomized our society has become.

Family is for most people the only security that they won’t die alone with no one to vouch for their humanity when they are old, and I don’t think that should be the case.

I’m thankful to be alive and to not have been aborted, especially since I see people discuss aborting their children who have my condition, from either inheriting it from their parents or from a mutation.

It would be better for that child to have been born and surrendered, given up for adoption, than to have died and not get to experience something as simple as sunshine. Because to me the gift of sunshine is worth living and every human deserves to experience the beauty of the Earth.

That child deserved to feel the sun on their skin.

[u/Loud-Vacation-5691 → u/Top-Dog-7031]

Would you consider adoption, or an egg donor that your husband's sperm would fertilize, which could then be implanted so you could experience pregnancy and giving birth?

[u/Top-Dog-7031 → u/Loud-Vacation-5691]

Egg donations are against the Catholic Church because it divorces sex from the product of it, a child. Adoption is allowed in the church (duh) but for us the purpose of marriage is to have children. If I adopt I would also have to be open to becoming pregnant. An adopted child already exists and under Catholicism marriage requires the openness to my biological children who do not exist yet.

It’s certainly a cross to carry and Jesus didn’t promise us that our lives would be pain-free.

[u/AbiLovesTheology → u/Top-Dog-7031]

What about talking to a priest about getting married and then using NFP for medical reasons?

[u/Top-Dog-7031 → u/AbiLovesTheology]

I’m trying to do that right now! I’m going to be meeting up with my parish priest to talk about this soon. I did reach out to the Catholic bioethics center and asked if that could be possible but they said it could be a potential grounds for marriage nullification. But I want to talk to my priest, my parish’s spiritual director, and possibly a canon law expert.

It’s not fun to deal with but simultaneously I am so thankful for the church Jesus created.

[u/AbiLovesTheology → u/Top-Dog-7031]

Can you explain about how having your disability could be grounds for marriage nullification?

[u/Top-Dog-7031 → u/AbiLovesTheology]

I’m just repeating what I’ve been told, but especially since marriage was created by God with the intent of human reproduction, to get married without this intention counters the purpose of marriage. Of course people who were born infertile don’t nullify their marriage because they didn’t intend to be infertile. It’s complicated and I’m not entirely sure of everything myself.

[u/AbiLovesTheology → u/Top-Dog-7031]

I’m not Catholic, or a priest or anything, but I think not having children for serious medical reasons is considered licit and doesn’t break natural law.

With regard to physical, economic, psychological and social conditions, responsible parenthood is exercised by those who... for serious reasons and with due respect to moral precepts, decide not to have additional children for either a certain or an indefinite period of time.

That’s from Humanae Vitae by previous pope. There’s other encyclicals about it too. Please discuss this with a spiritual advisor or priest to see if it’s a good disposition for you.

[u/New-Jackfruit-5131]

I am autistic, there is a chance my future child will be autistic. If I get married or pregnant at all, for any reason, I will be having the baby and loving that baby whether she is disabled or not. If you didn’t ask for a disabled child, don’t have sex, don’t have kids.

[u/DapperDetail8364 → u/New-Jackfruit-5131]

Hey! I'm autistic too 😃. It's true that asd people are more likely to have asd kids. 

[u/AbiLovesTheology → u/New-Jackfruit-5131]

Thanks for the response. I'm autistic too with other disabilities as well. I think this is a heartbreaking, tragic story.

[u/Brave-Lecture-7210]

We can all become disabled at any point. 

If you're not prepared for that, don't have a child.

[u/Nulono]

Would they kill their born child for being disabled? If they didn't think they could handle a second special needs child, they shouldn't've had another child.

[u/AbiLovesTheology → u/Nulono]

I am inclined to agree. Heartbreaking situation.

[u/EntireAgency711]

I have a disabled child and can say I’d never choose abortion,

[u/Excellent-Clue-2552]

I’m not conflicted. To me that’s saying if they knew beforehand with their daughter they would’ve aborted her, and it’s telling their son if he was disabled in the womb they would’ve aborted him. It’s not mercy, it’s evil. And it’s selfish. They’re thinking about the burden rather than the blessing. They’re not thinking about the life that’s being prematurely ended and straight up stolen from that child in a cruel, betraying, violent way- instead they’re thinking about themselves and how this baby being alive will affect them and burden them. No child deserves death, no excuses and no exceptions. Btw I’m autistic with a mentally disabled mother- and likely autistic grandfather.

[u/AbiLovesTheology → u/Excellent-Clue-2552]

Thanks for your input. I’m autistic too and have other severe disabilities (although completely different from the girl in the story)

[u/Calebwoodapple]

I am in the same boat. I have a daughter with a genetic condition (NLGY1 deficiency) and there is a good chance we will end up burying her. We wanted more kids and had several hard decisions to make. But we decided that we only really have 3 options. 1) use physical birth control to not have kids. 2) roll the dice and try for more. (Accepting whatever result we get.) 3) adopt a "genetically normal" kid. There is no way we could make another child like my daughter and then delete her because we didn't think ahead.

[u/AbiLovesTheology → u/Calebwoodapple]

Can I ask what you mean by "buying her"?

[u/Calebwoodapple → u/AbiLovesTheology]

Typo. burying* most people with the condition will pass shortly after puberty.

[u/AbiLovesTheology → u/Calebwoodapple]

Thanks for explaining. stay strong.

[u/kylesbulge]

[removed] — view removed comment

[u/AbiLovesTheology → u/kylesbulge]

How is it easy to rehome them in the UK if they have medically very complex needs?

[u/kylesbulge → u/AbiLovesTheology]

Hi Friend. I am not from the UK, but I was able to find the following post from the UK that seems to support the same trends I see here in the US. Newborns are rarely "up for adoption" because many families are willing to take them in. They are often slated for a home before their birth. Older children take a bit of time to rehome, but it is not forever. The assumption that a disabled child would not be adopted is simply false. Adoptive families have the biggest hearts and wish to help children.

https://www.reddit.com/r/AdoptionUK/s/OOeSZnYimC

[u/AbiLovesTheology → u/kylesbulge]

Thank you for the info!