Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial

Interesting, I assumed the stuff in the tubes had to be sterile. I don't know why it won't let you quote me, I haven't blocked anyone. Yes, it was a dick move on Gwen's part and all because muscle relaxers aren't nAtUrAl.
Nah. The contents of your stomach aren't sterile, nor is the food you eat. Same for spuds.
 
@Sparkling Yuzu It won't let me quote you, but while the muscle relaxants were stupid to omit, putting non-sterile things in the g-tube is fine. I'm not even sure how many tube feeds are actually sterile vs clean.
Let's not forget that only Claire had a feeding tube. Gwen Fartley never had one put in for Lola, because, and I quote, "It would have made her look sickly". She even straight up admitted once she didn't want Lola to get a feeding tube because giving her the bottle was the only "normal" thing they could do with Lola. Make no mistake, Gwen was a sadist. Only her needs mattered.
 
One day, Null got tired of seeing walls of text being quoted for an equally retarded response; so he placed an character limit on which posts can be directed quoted
good news is you can just highlight the section of the long post you want to quote and it will come up with a "quote / reply" button for that selection of text
 
I posted a Washington Post article about the case in A&N:
More sensible comments that realize her poor brain was toast than I thought.

Going to guess the idiot posters decided not to interfere, as their lack of brain would have been highlighted.

It's fucking disgusting. They knew, from 11-14 weeks gestation, she would be disabled. But still, they persevered.
They knew they could have an abortion and end their daughter's pain. But still, they persevered.
They knew she'd be born and die in a hospital, barely ever leaving. But still, they persevered.
They took it to court with no hope of winning against a disorder that's a death sentence. But still, they persevered.
And what did they get? Exactly what they would have got a year ago.
 
Did they? I'd not heard about that, I'd assumed she was seemingly normal at birth until she started having seizures.

Given that Indi's specifically mutation is apparently extremely rare and always fatal in infancy or very early childhood, I would assume normally in those types of cases palliative care and hospice would start after a fatal diagnosis. Unfortunately the parents refused to accept the situation and CC got involved and made it even worse.

Didn't Alfie Evans also have a fatal mitochondria disease? I think that was the one whose brain was described as liquefied.
Little is known about mitochondrial disease, and I don't think the overall syndrome was identified until very recent years. I first heard of it in the late 1990s, when I was temping at a pharmacy where a toddler customer had just died from it. I knew this, and can repeat it here, because his obituary requested donations to the Mitochondrial Disease Foundation. This place was just one of many that took good care of him right up until the day he died, IIRC at home because that's where his family had cared for him, and his death was quite sudden.

I follow a YouTube channel called "Life With a Vent" which is a woman who had a lifetime of vague health problems and finally got her diagnosis when her condition crashed during her 2nd or 3rd year of medical school, and TBH I can't believe she's still alive. She still seems to have a decent QOL regardless.

I suspect that many of these mutations are things you have to be specifically looking for - that most of them do not show up in routine tests
 
With as rare as the specific mutation Indi had is, would that have been able to be diagnosed prenatally? I know genetic screening has gotten a lot cheaper and easier in the past decade, but would such a rare condition be able to be screened for before birth?
It's possible, but not likely, especially for a first pregnancy with no relevant family history. People think of genetic testing as a monolith, but there are multiple methods for identifying mutations. This is an excellent explanation from the United States National Institutes of Health, but in short, it's extremely costly and onerous to screen a person's entire genome for a mutation, and most of the genetic testing conducted is not comprehensive.

The most common initial strategy is testing for mutations in a single gene or group of genes of interest. Of course, this requires that the clinician have some idea of what the problem is. For example, a child with drug-resistant seizures might be tested for a mutation in several genes known to be associated with childhood-onset intractable epilepsy, or a newborn with multiple congenital anomalies suggestive of a particular syndrome might be tested for a mutation only in the causative gene. Without actual evidence to point the way, it's tantamount to a wild goose chase, especially considering how exceedingly rare a disorder such as combined D2/L2 hydroxyglutaric aciduria is, with fewer than 150 cases ever reported in the world. I would wager that the vast majority of family physicians or even pediatricians have likely never heard of it, and it would almost certainly not have been on their radar even once the seizures manifested. Even if there were concerns prior to Indi's birth, it would be quite extraordinary for anyone to initiate the kind of testing needed to identify such an incredibly rare disorder. Medical students are taught to think horses instead of zebras for a reason.

If single gene or panel testing results are negative, more comprehensive testing may be done, which I assume is how Indi was diagnosed. The available evidence suggests that D2/L2AD is inherited in an autosomal recessive manner, which just means that a proband must inherit two mutated copies of the SLC25A1 gene, one from each parent, in order to be affected. Each time Indi's parents conceive, they have a 25% chance of producing an affected offspring with mutations in both copies of the gene, a 25% chance of producing a healthy non-carrier with two normal copies, and a 50% chance of producing an asymptomatic carrier with one mutated copy and one normal copy.

Because the disorder and its causative mutation have now been identified, should Indi's parents choose to have another child, it will be much simpler to test subsequent pregnancies. Really, this is one of the cruelest things about devastating genetic disorders. Sometimes, it takes losing a child to save the ones who come after from immense suffering.
 

Thought this article would be relevant to this thread. The woman interviewed for the piece had three brothers die as children and has one severely disabled adult sister. The parents’ take on things? God’s will 🤷‍♀️

It references a U.K. research project called Born In Bradford (Bradford is a city in the north of England with a large Pakistani population) which found that, ten years ago, 62% of babies born were to Pakistani parents who were first or second cousins. Needless to say, the instances of stillbirth, infant death and severe disability were way above the national average.

Ten years later, the figure has gone down to a mere 46%.
 
Thought this article would be relevant to this thread.
the saddest take away from that article was "Growing up, Aisha had the added responsibility of being a carer for her siblings, while her peers were free to play or study."

As we've seen over and over in this thread (and ones like the Hartleys), the poor functioning siblings are often ignored in favour of the special needs child/ren.
 
I think there's actually been a short documentary posted ITT about Pakistani/etc immigrants in the UK having kids with fucked up genetic conditions due to cousin marriage. Good it sounds like the issue is slowly declining.

Not like UK royals didn't have the same issue until relatively recently (like the Queens sisters).
 
I think there's actually been a short documentary posted ITT about Pakistani/etc immigrants in the UK having kids with fucked up genetic conditions due to cousin marriage. Good it sounds like the issue is slowly declining.

Not like UK royals didn't have the same issue until relatively recently (like the Queens sisters).
This is one i have watched a few times. Its infuriating that they refuse to admit that generations of cousins marrying has any consequences but are outraged at people being so "racist" for stating the facts of generations of first cousins marrying

 
This is one i have watched a few times. Its infuriating that they refuse to admit that generations of cousins marrying has any consequences but are outraged at people being so "racist" for stating the facts of generations of first cousins marrying


There's a similar phenomenon happening within the FLDS communities. There's so much inbreeding and cross breeding, so the tree is more a circle. Fumarase deficiency (Fumarase deficiency causes encephalopathy, severe intellectual disabilities, unusual facial features, brain malformation, and epileptic seizures due to an abnormally low amount of fumarase in cells. It can initially present with polyhydramnios on prenatal ultrasound.)

But they're not seeing it on ultrasound as they don't have them! But they're happy to get the govt gimmes
 
Ten years later, the figure has gone down to a mere 46%.
Are Pakis getting better...?
are outraged at people being so "racist" for stating the facts of generations of first cousins marrying
I'm a proud racist against cousin-fuckers.
But they're not seeing it on ultrasound as they don't have them! But they're happy to get the govt gimmes
Lol, niggers. Have some pride and care for your genetic stock and the health of your community.
 
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