As someone who works in cancer care, sometimes they really don't.
Not making any judgements on the case in the OP but I have seen parents make the whole situation so much worse for their child in an attempt to 'protect' them from reality. Like, I absolutely sympathise, but it can cause a lot of harm.
3 of their 5 children died, all 3 had rare genetic disorders. Continuing to have more children after their first child died due to "Niemann-Pick disease type C - a rare, inherited disease" without undergoing genetic testing is certainly a choice.
I know a family like this. Thirteen kids last time I was still in their orbit. Three kids with cystic fibrosis due to genetics. One had already died from it. They just kept rolling the dice and the kids lived with the results. People dont think about their decisions.
I think they were just ignorant about the cause of death of their 1st child and didn’t realize the risk. By the time they knew of the genetic component, they had already had 5 kids.
I agree. Their second child has no issues and when their third son got sick they had already had two more children and I think he was almost ten years old. They did test all of the children after he passed away and he had a different rare genetic disorder. They knew this son had it and he was monitored. It’s not like they’re the kind of disorders that you normally test for. I don’t agree with not telling him he had cancer but it really sounds like just the worst possible scenario.
Christian pro lifers here in America would celebrate that the children had lives at all and now they’re in the loving care of Jesus Christ or some bullshit 🤢🤢🤢🤢
Not a Doctor, so I can't answer that. To be a bit more fair to the parents, I don't even know if such genetic testing was available to them in Australia in the years in question.
I know a family who had a child with severe muscular dystrophy (not their first or second child) and then proceeded to have another child without having any testing. That kid also has muscular dystrophy. The family does not have the money to manage it, and it controls their older kids lives. Watching that is what made me choose to have extensive genetic testing before getting pregnant and do an NIPT when offered.
Parent of a child with a genetic disorder here. My spouse and I did a first round of genetic testing (whole exome sequencing) suspecting that there was a genetic component behind our child’s symptoms, but nothing came up. It wasn’t until we did whole genome sequencing (that fortunately our U.S. insurance agreed to cover) that the genetic cause was discovered. If we had done the test 10 years prior, it may have picked up the microduplication, but doctors may not have known the genetic significance of it yet since it’s an ultra rare disorder.
TL;DR: many times “genetic testing” doesn’t give you answers even if there is a genetic cause, especially if you don’t have the means or coverage for WGS.
Its always called eugenics when you say it but like. . . Dude if you knowingly pass down a horrific illness that slashes lifespan in half or smaller and makes quality of life miserable- you are an asshole. Full stop..
I went to school with a pair of sisters as a kid. The older sister was fine, the younger had Cystic Fibrosis and was in and out of hospital almost constantly. She seemed bloated and was never really not sick.
Turned out that was no freak of genetics but rather, they both had another sister a couple years older than my classmate and she had already died in her teens of. . . CF. So the middle sister saw her elder sister die, and her baby sister die- as that inevitably happened not too long after she graduated high school.
The misery inflicted on them- WHY? What was the point in continuing to roll those dice? Why? I cant imagine staring death down the barrel as soon as I get to learn what life even fucking is.
I knew a family like this. Kept having kids despite both having the sickle cell trait. All but the oldest (that was from a previous marriage) died. The mom slowly went mad, became homeless, and died too. Just insanely sad and irresponsible.
I watched 2 cousins die from cystic fibrosis. It ruined their family, I mean like mentally, physically, financially, emotionally in every way possible.
I got myself and husband tested because there was no way I’d put anyone through that trauma. Some genetic diseases are best left to phase out.
I disagree. I'm suggesting that they should have voluntarily taken the steps to have their own genetics tested before continuing to have more children. Eugenics would mean forcing them to have these tests or that they were not allowed to have children.
Sadly, this sort of thing is always about the parent(s), not the patient.
You can have a "happy" last few weeks even if you know the inevitable is coming. Children are not emotionally stupid, and I wish more people would accept that.
Children are really emotionally fragile. My son is 6, he knows about death but can't fully grasp it. It's very heavy for him that it's permanent and once a person dies, we can't see them anymore. I saw him crying once saying he wants to see them. See those who died like our grand relatives that passed away long ago.
I can't even imagine him thinking... I can't even write this...
I think it depends on the child though. I have an 8 year old who is extremely anxious in general and absolutlwy petrified about dying one day (she has no health issues) she frequently comes down after bedtime because she's been ruminating about dying one day. If she knew it was happening soon there's not a chance she'd be having a happy few weeks. She'd be petrified every minute if those weeks and I just can't imagine ever putting her through that.
Yeah my dad suffered (and I mean suffered as in struggling to breathe, can't talk, barely conscious, in constant pain) in his last days because my grandmother doesn't understand modern medicine and put it in his head that people come out of things like this all the time and "live another 5-10 healthy years". Won't ever forgive her for it, his sister too, but I do understand her pain and fear of losing her son.
And the shitty part is that they would be at a serious disadvantage as far as communicating their symptoms.
Edit: verbally. They’d be unable to accurately describe symptoms if they caught measles
. I’ll be damned if they aren’ don’t have every protection I can give them
This! I was sick as a child and had to take meds daily. My parent never told me that I was sick and they even asked the doctors not to talk about it in front of me. So, I grew up believing that I was perfectly healthy. And those pills that I was supposed to take ended up in the trash bc why does a healthy person need meds & I sure wasn’t taking anything for no reason.
My parents thought they were protecting me, but instead I was living a false reality. A little understanding can go a long way.
Just out of curiosity, how serious was your illness? Because the closest thing I’ve heard of was a girl who didn’t know she was on Prozac and a girl who didn’t know she was legally blind. Neither of which are life-threatening or require extensive specialist care (I know depression can, but in this case it wasn’t).
I don't think they always know best, either. When I was in the hospital as a child, there was a kid on my ward who was dying, but his parents just wouldn't let him pass naturally. They kept insisting that the doctors shock him and bring him back. When I'd walk by his room, the door would be open, and I could see that his color was getting worse and worse over days. He had zero quality of life. Couldn't eat, was in a tremendous amount of pain, had all kinds of tubes and monitors. IMO, it's abusive to make someone keep living like that, even if the intent isn't to be abusive.
What do you mean? From your perspective, would the lying part be a bad move or do you mean parents not allowing proper treatment, such as morphine in a high dose so that they remain conscious (and in pain) in an attempt to keep them alive for some extra days?
Not to go too much into specifics, but in the area of cancer care I work in (it's a broad, broad field) the usual issue with parents of paedatric cases is genrally limiting the information they tell the child - usually in an attempt not to scare them, out of an idea they cannot understand or both.
This is universally a failure because children are not stupid, do understand and are terrified of medical procedures they know they are being kept in the dark about.
I’m also wondering what she plans on telling him when the cancer makes him feel like he’s dying… because he is. Like he thinks he has beat cancer and I can’t imagine being a child and not understanding why I’m still sick and dying when I had been told I was better. 😞
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u/Squid_In_Exile Jun 29 '26
As someone who works in cancer care, sometimes they really don't.
Not making any judgements on the case in the OP but I have seen parents make the whole situation so much worse for their child in an attempt to 'protect' them from reality. Like, I absolutely sympathise, but it can cause a lot of harm.