Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial
- Thread starter jurassic bark
- Start date
- Joined
- Feb 24, 2019
There are tons havent found any with insane parents yet though.
- Joined
- Apr 30, 2021
I don't think they need insane parents. You can say "the parents are the real lolcows" but it's not an actual rule. Even "good" parents like the South African ones who constantly resuscitated their potato are worth gawking at.
- Joined
- Sep 9, 2021
Hey, good timing!! I actually do!
Alright guys. Buckle up. I came across this page while researching a munchie and it made me drop everything so I could show you guys. Like not to be dramatic but it's a hot contender for the worst spud case I've witnessed.
Meet Havyn Joan Howard, d.b.a. Havyn's Hope. (pronounced like haven, I'm assuming) I am spoilering this photo because it is a bit jarring. The whole post isn't spoilered, but the rest is chronological and her appearance is easier to adjust to.
She just turned two yesterday, and despite what you may think, she is in fact alive and breathing (technically).
Havyn has a rare genetic disorder referred to as ALG1-CDG, which is a variation of CDG (Congenital Disorder of Glycosylation) that originates with the ALG1 gene. It causes developmental delays, seizures, low muscle tone, microcephaly, and immunodeficiency, among other issues. There are only about 40 recorded cases of this particular mutation. CDG overall has few treatment options, most commonly the goal is symptom management and comfort care. Patients rarely survive past infancy, except in very mild cases.
(here is NIH article about it)
Havyn is beating the odds, with the help of disposable income and the American health care system!! Let's take a look at how we got here.
Havyn's parents, Brigette and Ryan, are some regular middle class NPCs from rural Georgia. They do all the typical things rich southern people do, like going to church and putting Cricut vinyl decals on everything. Very average people, nothing really of note in their history (not that I looked very hard). They got married in 2020.
Brigette had a normal pregnancy for all I can tell, there's no mention of any complications but most of her posts are set to private so I wouldn't really know. Havyn was born on January 11th, 2021, and didn't seem to have many issues at first, though we're told in a later post they'd gone to the hospital for seizures a few times before, also that Havyn was noticeably not very active/alert and seemed to sleep a lot of the time.
Havyn has a brand deal almost immediately after exiting the womb!
Here are some various other pics pulled from FB of Havyn's early months. Besides the newborn pic where she looks swollen, there's not much to indicate cause for concern. She does have her eyes closed in the majority of photos.
More normal baby posts interspersed with vague Jesus shit follow for the next few months until July. Brigette posts a lot of promo for that baby clothes company but I'll spare everyone from that.
July 1st, 2021 we get the first medical update about Havyn.
Brigette says Havyn has been in the PICU for 12 days, originally with a UTI, but she now has a lung infection and has been placed on a ventilator. Havyn is also having seizures that worsened with the infection. The extreme swelling is already noticeable. She doesn't say it yet but Havyn was septic here.
July 7th we find out that Havyn has ALG1-CDG. We learn that it's very rare and not well understood. They want to find a specialist and they want to raise awareness.
Fundraiser, not really surprised, not mad about this. For now at least. And another update, they're working to drain fluid from the infections.
July 10th and the vent is coming out. Or is it? They attempt to take her off but she has too much swelling and mucus to breathe and it has to be put back in. They do more breathing treatments and more suction and try 4 different antibiotics. WBC is still high and Havyn is still having seizures. After several days she improves a little and the doctor is "proactive." She receives a blood transfusion. WBC eventually goes down.
After a couple of good days they switch from 4 antibiotics to 1 antibiotic and an antifungal. They do a CPAP trial. WBC is better. Still on the vent but getting breathing treatments and clearing phlegm more easily. She has a CT scheduled but has to wait until she can tolerate the contrast fluid.
Brigette shares that 100% of ALG1-CDG kids experience developmental delays. Havyn struggles with holding up her head and gripping toys at 6 months, but she is working with PT and OT and they celebrate the little things.
Next post says Havyn is doing better and is more alert. CT showed only a small amount of fluid. They plan to remove the drain and her central line & place a picc for home infusions. Breathing tube removal still to come.
August 5th Brigette updates that Havyn continues to respond poorly to vent removal and is unable to breathe on her own. There is not much else that can be done. They discussed their options and.......decide to have Havyn fitted with a tracheostomy AND a g-tube. Their reasoning for this is that while Havyn was in the hospital, she became more alert and responsive than ever before. She went from rarely opening her eyes or moving her limbs, all the way to exhibiting a grasp reflex and keeping her eyes open. They believe that continued care will improve her quality of life and overall abilities. Later the same day we find out surgery is postponed because Havyn has a cold.
August 11th Havyn has surgery to place the trach and gtube. She has a seizure after. It's the first time in more than 3 months that her face has no tape on it.
August 22nd 2021 Havyn's Hope Facebook page is started. The first post is an intro and the first full health summary we get. Havyn had her first seizure the day before she turned 3 months old. (April 10th) June 19th she was admitted to the hospital, but it turned out to not be "her typical admission" which is a week for med adjustment. Here we get confirmation that the UTI turned septic which led to multiple infections.
Havyn is 1 of 40 recorded ALG1-CDG cases in the world. The doctors "have no idea what's in store," but Brigette knows she has to spread awareness.
Brigette says here that Havyn's disorder is neurological, and I'm not sure if that's an intentional mistake or not. It's a congenital genetic disorder, it's not neurological. It's true that there's no treatment for CDG, but the prognosis is somewhat understood from what I can tell, depending on the severity. I find it very unlikely that no one had a talk with them about what to expect.
I also noticed that Brigette never discusses Havyn's brain activity or cognitive potential. You'd think a doctor would want to look into something like that but we never really hear anything. It's just never discussed in specifics.
Couple days later Havyn moves to TICU (I had to look it up, it's the technology-assisted ICU at Children's of Atlanta) where they will work with her on building strength and spending time off the vent as well as teach the parents everything they need to know about the machines. They will be headed home after all their "check-offs" but there's no timeline. Also Havyn is the Boss Baby. Still having seizures, none of the normal medicines have worked so they're trying the others.
After a little over a week she moves back to PICU with vomiting and seizures and elevated WBC. CT scan showed fluid around the brain but not in it. On 9/11 Havyn turns 8 months old and salutes the troops.
September 17th, day 90 of hospital admission. Back in TICU and fluid is slowly decreasing. Havyn gets Clonidine patch and blood pressure meds. Zofran helps with feeds. Havyn had a really good PT session where she held her own head up for a few seconds and picked it up when it tipped forward. Also had tummy time.
A week later Brigette takes Havyn outside for the first time since her admission. Then we get a CDG awareness post. Havyn is developmentally closer to a 2 month old at this point. She can sometimes track with her eyes. When she discharges, they will have 13 (thirteen) specialists to follow up with, not including her therapists. Cha-ching. Also, both Havyn's parents carry this gene, so Havyn's condition was a 1 in 4 probability.
There was a community fundraiser event.
And October 12th Havyn goes home. For 26 hours, and then returns to the hospital for uncontrollable seizures. The culprit? Another UTI! Same shit different day but IMO this is the visit that fully spudded Havyn. Seizures at any age can fuck someone up, but in fresh babies it's especially dangerous. From here on out her appearance only declines further.
The clown costume is Brigette's first Halloween costume, apparently. Have you noticed a living doll theme yet here? You'll notice it.
That second photo is really something.
Havyn "hangs her first Christmas ornament." Thanksgiving is spent in the hospital again, uncontrollable seizures, but don't worry! We still get Thanksgiving outfit pics. Get ready for Christmas.
Note, I know keto is a fad diet but I actually think Havyn may be part of the group that can actually medically benefit from it. Not 100% sure though because IDK shit and also her brain is made of fried potatoes which is not usually fixable.
For December I'm going to put most of the pics under a spoiler because they're just hospital updates with different stupid Christmas outfits. Havyn is clearly having the time of her life.
I did you all a favor here and cropped out the bottom of this one.
Available spoilered in case anyone wants to see what fully deconditioned baby feet look like!
December 13th, 2021 Havyn debuts her new wheelchair. We get a video of her "playing" in her new chair.
Genuinely sad FB post.
Anyway here comes Christmas and we have some real horror content starting to emerge. This is just the beginning!
The juxtaposition with Havyn and a regular alive baby is wild.
OMG she's reading!!!!!!!!!!!!
Again, it's just. Too much.
This post is already super long, so I'll start up another one to guide us through 2022. It only gets vastly more horrifying from here. leave you with my favorite set of Havyn photos from 2021. Cheers!
(this is my first ever write-up of this size & detail before, I am very eager to share. Tips & criticisms are welcome!)
Alright guys. Buckle up. I came across this page while researching a munchie and it made me drop everything so I could show you guys. Like not to be dramatic but it's a hot contender for the worst spud case I've witnessed.
Meet Havyn Joan Howard, d.b.a. Havyn's Hope. (pronounced like haven, I'm assuming) I am spoilering this photo because it is a bit jarring. The whole post isn't spoilered, but the rest is chronological and her appearance is easier to adjust to.
Havyn has a rare genetic disorder referred to as ALG1-CDG, which is a variation of CDG (Congenital Disorder of Glycosylation) that originates with the ALG1 gene. It causes developmental delays, seizures, low muscle tone, microcephaly, and immunodeficiency, among other issues. There are only about 40 recorded cases of this particular mutation. CDG overall has few treatment options, most commonly the goal is symptom management and comfort care. Patients rarely survive past infancy, except in very mild cases.
(here is NIH article about it)
Havyn is beating the odds, with the help of disposable income and the American health care system!! Let's take a look at how we got here.
Havyn's parents, Brigette and Ryan, are some regular middle class NPCs from rural Georgia. They do all the typical things rich southern people do, like going to church and putting Cricut vinyl decals on everything. Very average people, nothing really of note in their history (not that I looked very hard). They got married in 2020.
Brigette had a normal pregnancy for all I can tell, there's no mention of any complications but most of her posts are set to private so I wouldn't really know. Havyn was born on January 11th, 2021, and didn't seem to have many issues at first, though we're told in a later post they'd gone to the hospital for seizures a few times before, also that Havyn was noticeably not very active/alert and seemed to sleep a lot of the time.
Havyn has a brand deal almost immediately after exiting the womb!
Here are some various other pics pulled from FB of Havyn's early months. Besides the newborn pic where she looks swollen, there's not much to indicate cause for concern. She does have her eyes closed in the majority of photos.
More normal baby posts interspersed with vague Jesus shit follow for the next few months until July. Brigette posts a lot of promo for that baby clothes company but I'll spare everyone from that.
July 1st, 2021 we get the first medical update about Havyn.
Brigette says Havyn has been in the PICU for 12 days, originally with a UTI, but she now has a lung infection and has been placed on a ventilator. Havyn is also having seizures that worsened with the infection. The extreme swelling is already noticeable. She doesn't say it yet but Havyn was septic here.
July 7th we find out that Havyn has ALG1-CDG. We learn that it's very rare and not well understood. They want to find a specialist and they want to raise awareness.
Fundraiser, not really surprised, not mad about this. For now at least. And another update, they're working to drain fluid from the infections.
July 10th and the vent is coming out. Or is it? They attempt to take her off but she has too much swelling and mucus to breathe and it has to be put back in. They do more breathing treatments and more suction and try 4 different antibiotics. WBC is still high and Havyn is still having seizures. After several days she improves a little and the doctor is "proactive." She receives a blood transfusion. WBC eventually goes down.
After a couple of good days they switch from 4 antibiotics to 1 antibiotic and an antifungal. They do a CPAP trial. WBC is better. Still on the vent but getting breathing treatments and clearing phlegm more easily. She has a CT scheduled but has to wait until she can tolerate the contrast fluid.
Brigette shares that 100% of ALG1-CDG kids experience developmental delays. Havyn struggles with holding up her head and gripping toys at 6 months, but she is working with PT and OT and they celebrate the little things.
Next post says Havyn is doing better and is more alert. CT showed only a small amount of fluid. They plan to remove the drain and her central line & place a picc for home infusions. Breathing tube removal still to come.
August 5th Brigette updates that Havyn continues to respond poorly to vent removal and is unable to breathe on her own. There is not much else that can be done. They discussed their options and.......decide to have Havyn fitted with a tracheostomy AND a g-tube. Their reasoning for this is that while Havyn was in the hospital, she became more alert and responsive than ever before. She went from rarely opening her eyes or moving her limbs, all the way to exhibiting a grasp reflex and keeping her eyes open. They believe that continued care will improve her quality of life and overall abilities. Later the same day we find out surgery is postponed because Havyn has a cold.
August 11th Havyn has surgery to place the trach and gtube. She has a seizure after. It's the first time in more than 3 months that her face has no tape on it.
August 22nd 2021 Havyn's Hope Facebook page is started. The first post is an intro and the first full health summary we get. Havyn had her first seizure the day before she turned 3 months old. (April 10th) June 19th she was admitted to the hospital, but it turned out to not be "her typical admission" which is a week for med adjustment. Here we get confirmation that the UTI turned septic which led to multiple infections.
Havyn is 1 of 40 recorded ALG1-CDG cases in the world. The doctors "have no idea what's in store," but Brigette knows she has to spread awareness.
Brigette says here that Havyn's disorder is neurological, and I'm not sure if that's an intentional mistake or not. It's a congenital genetic disorder, it's not neurological. It's true that there's no treatment for CDG, but the prognosis is somewhat understood from what I can tell, depending on the severity. I find it very unlikely that no one had a talk with them about what to expect.
I also noticed that Brigette never discusses Havyn's brain activity or cognitive potential. You'd think a doctor would want to look into something like that but we never really hear anything. It's just never discussed in specifics.
PS sorry in advance for my shitty video archiving
Couple days later Havyn moves to TICU (I had to look it up, it's the technology-assisted ICU at Children's of Atlanta) where they will work with her on building strength and spending time off the vent as well as teach the parents everything they need to know about the machines. They will be headed home after all their "check-offs" but there's no timeline. Also Havyn is the Boss Baby. Still having seizures, none of the normal medicines have worked so they're trying the others.
After a little over a week she moves back to PICU with vomiting and seizures and elevated WBC. CT scan showed fluid around the brain but not in it. On 9/11 Havyn turns 8 months old and salutes the troops.
September 17th, day 90 of hospital admission. Back in TICU and fluid is slowly decreasing. Havyn gets Clonidine patch and blood pressure meds. Zofran helps with feeds. Havyn had a really good PT session where she held her own head up for a few seconds and picked it up when it tipped forward. Also had tummy time.
A week later Brigette takes Havyn outside for the first time since her admission. Then we get a CDG awareness post. Havyn is developmentally closer to a 2 month old at this point. She can sometimes track with her eyes. When she discharges, they will have 13 (thirteen) specialists to follow up with, not including her therapists. Cha-ching. Also, both Havyn's parents carry this gene, so Havyn's condition was a 1 in 4 probability.
There was a community fundraiser event.
And October 12th Havyn goes home. For 26 hours, and then returns to the hospital for uncontrollable seizures. The culprit? Another UTI! Same shit different day but IMO this is the visit that fully spudded Havyn. Seizures at any age can fuck someone up, but in fresh babies it's especially dangerous. From here on out her appearance only declines further.
The clown costume is Brigette's first Halloween costume, apparently. Have you noticed a living doll theme yet here? You'll notice it.
That second photo is really something.
Havyn "hangs her first Christmas ornament." Thanksgiving is spent in the hospital again, uncontrollable seizures, but don't worry! We still get Thanksgiving outfit pics. Get ready for Christmas.
Note, I know keto is a fad diet but I actually think Havyn may be part of the group that can actually medically benefit from it. Not 100% sure though because IDK shit and also her brain is made of fried potatoes which is not usually fixable.
For December I'm going to put most of the pics under a spoiler because they're just hospital updates with different stupid Christmas outfits. Havyn is clearly having the time of her life.
I did you all a favor here and cropped out the bottom of this one.
Available spoilered in case anyone wants to see what fully deconditioned baby feet look like!
December 13th, 2021 Havyn debuts her new wheelchair. We get a video of her "playing" in her new chair.
Genuinely sad FB post.
Anyway here comes Christmas and we have some real horror content starting to emerge. This is just the beginning!
The juxtaposition with Havyn and a regular alive baby is wild.
OMG she's reading!!!!!!!!!!!!
Again, it's just. Too much.
This post is already super long, so I'll start up another one to guide us through 2022. It only gets vastly more horrifying from here. leave you with my favorite set of Havyn photos from 2021. Cheers!
(this is my first ever write-up of this size & detail before, I am very eager to share. Tips & criticisms are welcome!)
Attachments
I'm guessing that they aren't talking about her mental status because she isn't expected to live long enough for anyone to need or want that information.
I went down a rabbit hole a couple days ago about mitochondrial disease, and that may explain a LOT of people, disabled or not, chronically ill or not, who have persistent strange symptoms.
I went down a rabbit hole a couple days ago about mitochondrial disease, and that may explain a LOT of people, disabled or not, chronically ill or not, who have persistent strange symptoms.
- Joined
- Jul 6, 2022
- Joined
- Sep 9, 2021
Hi everyone, let's continue Havyn's Horrors.
She starts off 2022 by "tasting" a lollipop and turning 1 year old. Also, starting here I've included some comments as the Havyn's Hope FB page has begun to gain some traction, mostly among the boomer crowd.
First birthday party gives us another one of my all-time favorite Havyn pics.
Brigette makes a heartfelt birthday post and we can see the martyr complex already taking root here.
Very interesting post to take note of. Brigette lets us know they're looking for a different urologist for Havyn. I wonder why.
Havyn gets an eye exam and we find out that her eyes work fine, it's just her brain that's the problem. Y'know, just the thing that makes the eyes work.
I enjoyed this comment.
Brigette celebrates a birthday and Havyn gets glasses. For what, I'm not exactly sure.
Of course there's a tshirt campaign.
Macabre family photos.
In February Havyn goes all the way to Philadelphia to see a doctor who specializes in CDG. Cha-ching. Havyn might be used for experiments because she's so unique and rare.
We get some CDG info and a video of Havyn making a sound with her trach valve.
Havyn is apparently working on lifting her head and weight bearing on her hands and knees. I am pressing X to doubt.
Another hospital trip with uncontrollable seizures. And a baseball game! With custom shirt.
Havyn spends more time around a healthy baby and it's unnerving.
Brigette starts going hard for CDG awareness and wants to make shirts.
Brigette and some other moms take their kids and the spud to the Cabbage Patch Kids museum. Havyn gets her own Cabbage Patch Kid. You can't make this shit up.
Havyn celebrates one month seizure-free and we see some photos from PT. Also Easter. She really looks like a dead person at this point.
Another doctor search post, this time we find out directly that Havyn's GI doc is no longer interested in treating her. I wonder why. Also worth noting that the doctor most frequently recommended is the one who currently refuses to treat her any longer. He might be onto something.
Havyn does OT and has a picnic outside.
Brigett turns up the CDG-warrior-mama-sacrifice-fighter-inspirational bullshit. Wishes a happy mother's day to all the hardworking, selfless, loving mothers out there! Totally don't mean me haha!
Leaning further into the disabled-warrior-baby persona she wants to fill so badly, Brigett posts a bunch of CDG infodumps. I'm not going to summarize them because I didn't read them because I don't care.
Brigette takes a break from CDGposting to tell us about Havyn's trach and why she has it.
In between all these we get a video of Havyn having her head held up just out of frame, very Robyn-esque.
Update about another ER trip, return home, jerkoff post for disability moms.
In June, Havyn goes swimming or something.
Grotesque.
Then Havyn paints a duck and her fans go wild for it.
What? You say the pool excursion wasn't horrifying enough? You think Havyn should go to the beach???? You sick fuck, how on earth could anyone possibly-
Yeah, they took her to the fucking beach.
Alright guys I'm going to bed. I'll bring you the rest tomorrow.
Edited like 3 times for formatting because I'm gay and stupid
She starts off 2022 by "tasting" a lollipop and turning 1 year old. Also, starting here I've included some comments as the Havyn's Hope FB page has begun to gain some traction, mostly among the boomer crowd.
First birthday party gives us another one of my all-time favorite Havyn pics.
Brigette makes a heartfelt birthday post and we can see the martyr complex already taking root here.
Very interesting post to take note of. Brigette lets us know they're looking for a different urologist for Havyn. I wonder why.
Havyn gets an eye exam and we find out that her eyes work fine, it's just her brain that's the problem. Y'know, just the thing that makes the eyes work.
I enjoyed this comment.
Brigette celebrates a birthday and Havyn gets glasses. For what, I'm not exactly sure.
Of course there's a tshirt campaign.
Macabre family photos.
In February Havyn goes all the way to Philadelphia to see a doctor who specializes in CDG. Cha-ching. Havyn might be used for experiments because she's so unique and rare.
We get some CDG info and a video of Havyn making a sound with her trach valve.
Havyn is apparently working on lifting her head and weight bearing on her hands and knees. I am pressing X to doubt.
Another hospital trip with uncontrollable seizures. And a baseball game! With custom shirt.
Havyn spends more time around a healthy baby and it's unnerving.
Brigette starts going hard for CDG awareness and wants to make shirts.
Brigette and some other moms take their kids and the spud to the Cabbage Patch Kids museum. Havyn gets her own Cabbage Patch Kid. You can't make this shit up.
Havyn celebrates one month seizure-free and we see some photos from PT. Also Easter. She really looks like a dead person at this point.
Another doctor search post, this time we find out directly that Havyn's GI doc is no longer interested in treating her. I wonder why. Also worth noting that the doctor most frequently recommended is the one who currently refuses to treat her any longer. He might be onto something.
Havyn does OT and has a picnic outside.
Brigett turns up the CDG-warrior-mama-sacrifice-fighter-inspirational bullshit. Wishes a happy mother's day to all the hardworking, selfless, loving mothers out there! Totally don't mean me haha!
Leaning further into the disabled-warrior-baby persona she wants to fill so badly, Brigett posts a bunch of CDG infodumps. I'm not going to summarize them because I didn't read them because I don't care.
Brigette takes a break from CDGposting to tell us about Havyn's trach and why she has it.
In between all these we get a video of Havyn having her head held up just out of frame, very Robyn-esque.
Update about another ER trip, return home, jerkoff post for disability moms.
In June, Havyn goes swimming or something.
Grotesque.
Then Havyn paints a duck and her fans go wild for it.
What? You say the pool excursion wasn't horrifying enough? You think Havyn should go to the beach???? You sick fuck, how on earth could anyone possibly-
Yeah, they took her to the fucking beach.
Alright guys I'm going to bed. I'll bring you the rest tomorrow.
Edited like 3 times for formatting because I'm gay and stupid
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- Joined
- Jul 6, 2022
A few thoughts:
- There is a non-zero chance that Havyn's beachside bikini pics are floating around paedo ring photo collections
- I wonder if Robyn tried to get a head harness for Luna Buna but her huge skull wouldn't fit
- Despite being told Havyn's brain cannot interpret signals going into her eyeballs, they want glasses (more echoes of Luna)
- Is she so chubby because of steroids or related to her condition?
- I wonder if she barely ever looks conscious because the antiepileptic meds she needs to stop her seizing just make her constantly drowsy, or if it's also just related to her condition
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- Joined
- Apr 30, 2021
I'm guessing overfed bc both parents are obese.
Cakecankles
kiwifarms.net
- Joined
- Jul 19, 2019
Notice the two fans on her in last beach pic, bet she can’t regulate her temp.
- Joined
- Nov 18, 2020
I think there's a greater than non-zero chance. I really struggle to believe anyone looks at that and thinks, "Man, that kid looks pretty hot."
I don't think Robyn knows, because they definitely have these for giant water noggins, and if she knew, I'd have seen several photos of one with hot-glued energy crystals on Luna.
The rest I'm 100% with you on.
- Joined
- Oct 4, 2019
Mitochondrial disorders are a tricky one and I would have no idea if this is the case generally or not, but of the several young men I have worked with in a social care capacity who had unknown mitochondrial disorders, more than one went through periods of low consciousness/awareness that was attributed to the MD rather than drugs or other coexisting conditions they had. So while that's not a definitive yes applicable to every case (IANAD), it certainly is possible.
ed for clarity/correct englishing
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- Joined
- May 5, 2020
I'm having a hard time with the Havyn posts. I'm not seeing lolcow material. Parents seem to have done things correctly, didn't cause this kid's issues, didn't know about being gene carriers, are following treatment plans, aren't really posting any more than other special needs parents and don't seem in denial at all. Well, maybe wrt the glasses. She's only 2, the things being worked on in OT & PT are appropriate for her condition. (PL that I haven't really shared here before, but I was a pediatric OT in my working life) Info on ALG-1 looks like it may be fatal within childhood, but that doesn't mean that you don't treat or provide therapies. She at least shows some awareness and small voluntary movements unlike Luna, or the goblins, or shit, what's thanatropic dwarfism baby's name. Yeah, she's not pleasant to look at, but meh, just a spud look, not "grotesque" as you called her. I guess I just don't see the obnoxiousness in this family like our others.
- Joined
- Sep 9, 2021
Havyn doesn't progress. The therapies are meaningless. The doctors told her mother that she can't survive without a ventilator, and most parents would make the humane decision to remove the tube and allow her to transition naturally. Instead they're choosing to artificially prolong her life with expensive treatments that we don't even know she's conscious for. Havyn's mother is more interested in her newfound identity as a Disabled Child Mama Savior and her child's capabilities as a Living Doll than anyone's real quality of life, including hers and her husband's. You can't just fix a mitochondrial disease. Havyn's body has already been destroyed by her illness.
I think there's something incredibly obnoxious about toting around a corpse of a child and expecting everyone to play along and pretend there's nothing deeply wrong with it.
- Joined
- Nov 18, 2020
Accepting your precious, wanted child is broken beyond any intervention is a bitter pill to swallow. It makes sane people do mad things. Sometimes it destroys them.
It's human to want your child's life to have meaning. These people aren't doctors. They're still clinging to hope, and the price of what you're proposing is to take their hope away. I'm not saying you're wrong, but I'm letting you know the cost. That's the sort of thing that makes some people go for the rope. I believe they need to do that on their own time.
- Joined
- May 5, 2020
So, she's like any other mom of a special needs kid. If the trach (haha, my autocorrect changed that to tranch) placement was a fight with the doctors, your post doesn't show that.
She not lolcow material.
I really really hope this thread doesn't devolve into posting just spuds that you can't look at without cringing. The kids can't help that. This thread is for obnoxious parents who are in denial and think they know way more than the doctors who actually give a shit about their kids quality of life.
Edit: gotta add this. Therapies are not just for progression, they address making regression as small as possible. Usually to keep caregiving the child without difficulty.
- Joined
- Nov 18, 2020
Also, there is nothing wrong with giving Havyn a trach so she can live out her days with her family. Why does she need to die in a hospital so it's more inconvenient and expensive and heartbreaking for everyone?
Allo Vera
kiwifarms.net
- Joined
- Oct 6, 2019
Stumbled across this baby on IG. Brooke lost the genetic lottery. She was born with Congenital Hemophagocytic Lymphohistiocytosis. It’s an autosomal recessive disorder, meaning both parents are carriers. They obviously didn’t know any of this before she was born.
But GOD, I don’t think I’ve ever seen a more hopelessly sick looking baby in my life.
But GOD, I don’t think I’ve ever seen a more hopelessly sick looking baby in my life.
- Joined
- Sep 9, 2021
Here's the last part of Havyn's timeline up to now; sorry I shouldn't have tried to write-up more when I was overdue on sleep lol.
July 2022 finishes up with more doctor's visits, tests, scans, money money money money money. Must be nice. Went swimming with a cousin.
Havyn's therapy is increased to three days a week. I really just do not see the benefit. Brigette thinks we'll see Havyn standing with AFOs soon. I'm really curious about whether they have insurance paying for therapy. Hell, I'm curious about how they're paying for all of this anyway. (NOTE as of Jan 2023 there was no further mention of the AFOs and I don't believe I have seen them in any photos.)
CDG moms know more than a nurse with a license! Havyn has another ear infection, more anitibiotics. Then we find out that Havyn is getting a bronchoscopy, port placement, and bone marrow aspiration, all in one day. The port is needed because Havyn's veins are "so little" (more likely that they're blown IMO) and the bone marrow aspiration will hopefully give information to help them treat her platelet and anemia issues.
The procedures do not go as expected. The bronchoscopy doesn't find anything "super concerning," just a portion of Havyn's airway has gone soft and makes it harder to breathe. During the port placement, the surgeon couldn't find the vein and accidentally collapsed part of Havyn's lung instead. Things like this make me hope Havyn is not conscious to know all this is happening to her. She also caught another cold while in the hospital.
Weather changes trigger more seizures. I am very curious what "super alert and aware" looks like for Havyn at this point because we never see her with open eyes anymore. Spud warrior.
They went 93 days without having to call 911 but Havyn's seizures became uncontrollable with medicine. She gets slapped with some kind of Super Antibiotic and may have another CT scan.
We find out the issue; apparently four different types of bacteria had been festering in/around Havyn's trach site. She's improved and they plan for the port placement and bone marrow draw before discharge. We learn a little more about how difficult it has become to place IVs on Havyn so the port will be very beneficial.
They get to go home and Havyn is bouncing off the walls.
Halloween and a new tshirt campaign, including a messy bun with sunglasses because.... who knows. Brigette wanted it.
Brigette lets us all know that GOD picked her to be a Parent Of A Medically Complex Special Needs Child. She has watched medical teams perform CPR on her baby but GOD was actually the one who brought her back. She was given a choice between palliative care and a trach, but GOD sent her a sign: she saw a kid with a trach in the elevator. At the children's hospital. GOD is the reason for all of this, and nothing else. OK.
Havyn hangs another ornament for the start of the Christmas season and sits in a chair. I can't.
Merry Christmas! We're primed for another season of funky fresh 'fits but end up with mostly just pajamas. Fine by me though because I'm sure PJs are a lot comfier than frilly pants.
Christmas comes, Havyn leaves out cookies for Santa.
IDK man.
Now we've made it to January 2023. Havyn slept through therapy on one day and gave reactions to different activities. We get another video. The therapists seem genuinely wonderful and caring.
Birthday post. Havyn keeps them on their toes! No new pics in the post so I didn't include any of them.
And that's where we are now. I absolutely felt like an asshole writing this but I think that overall, the decisions made regarding Havyn's care haven't been for her benefit or comfort whatsoever. I certainly feel for her parents and her family, but it doesn't sit right with me that someone with little to no quality of life and no prognosis is having thousands upon thousands of dollars poured into their care, suffering through countless invasive procedures and bodily infections, just to languish around in coordinated outfits and bows. She's their "sweet warrior" but they choose to decimate her body further and further for the sake of feeling like they didn't give up. I just don't like it.
July 2022 finishes up with more doctor's visits, tests, scans, money money money money money. Must be nice. Went swimming with a cousin.
Havyn's therapy is increased to three days a week. I really just do not see the benefit. Brigette thinks we'll see Havyn standing with AFOs soon. I'm really curious about whether they have insurance paying for therapy. Hell, I'm curious about how they're paying for all of this anyway. (NOTE as of Jan 2023 there was no further mention of the AFOs and I don't believe I have seen them in any photos.)
CDG moms know more than a nurse with a license! Havyn has another ear infection, more anitibiotics. Then we find out that Havyn is getting a bronchoscopy, port placement, and bone marrow aspiration, all in one day. The port is needed because Havyn's veins are "so little" (more likely that they're blown IMO) and the bone marrow aspiration will hopefully give information to help them treat her platelet and anemia issues.
The procedures do not go as expected. The bronchoscopy doesn't find anything "super concerning," just a portion of Havyn's airway has gone soft and makes it harder to breathe. During the port placement, the surgeon couldn't find the vein and accidentally collapsed part of Havyn's lung instead. Things like this make me hope Havyn is not conscious to know all this is happening to her. She also caught another cold while in the hospital.
Weather changes trigger more seizures. I am very curious what "super alert and aware" looks like for Havyn at this point because we never see her with open eyes anymore. Spud warrior.
They went 93 days without having to call 911 but Havyn's seizures became uncontrollable with medicine. She gets slapped with some kind of Super Antibiotic and may have another CT scan.
We find out the issue; apparently four different types of bacteria had been festering in/around Havyn's trach site. She's improved and they plan for the port placement and bone marrow draw before discharge. We learn a little more about how difficult it has become to place IVs on Havyn so the port will be very beneficial.
They get to go home and Havyn is bouncing off the walls.
Halloween and a new tshirt campaign, including a messy bun with sunglasses because.... who knows. Brigette wanted it.
Brigette lets us all know that GOD picked her to be a Parent Of A Medically Complex Special Needs Child. She has watched medical teams perform CPR on her baby but GOD was actually the one who brought her back. She was given a choice between palliative care and a trach, but GOD sent her a sign: she saw a kid with a trach in the elevator. At the children's hospital. GOD is the reason for all of this, and nothing else. OK.
Havyn hangs another ornament for the start of the Christmas season and sits in a chair. I can't.
Merry Christmas! We're primed for another season of funky fresh 'fits but end up with mostly just pajamas. Fine by me though because I'm sure PJs are a lot comfier than frilly pants.
Christmas comes, Havyn leaves out cookies for Santa.
IDK man.
Now we've made it to January 2023. Havyn slept through therapy on one day and gave reactions to different activities. We get another video. The therapists seem genuinely wonderful and caring.
Birthday post. Havyn keeps them on their toes! No new pics in the post so I didn't include any of them.
And that's where we are now. I absolutely felt like an asshole writing this but I think that overall, the decisions made regarding Havyn's care haven't been for her benefit or comfort whatsoever. I certainly feel for her parents and her family, but it doesn't sit right with me that someone with little to no quality of life and no prognosis is having thousands upon thousands of dollars poured into their care, suffering through countless invasive procedures and bodily infections, just to languish around in coordinated outfits and bows. She's their "sweet warrior" but they choose to decimate her body further and further for the sake of feeling like they didn't give up. I just don't like it.
- Joined
- Sep 9, 2021
I agree with you, and I don't mean to sound callous with my opinions. I'm hoping that the end of my timeline will give some more insight to why I feel Brigette is more cow than not. I went back and forth with whether or not I felt Havyn's case was a good fit for this thread. I decided to post because of what I feel is Brigette's attempt to make Havyn's condition into a personality trait and a social media-worthy lifestyle, and her desire to continue Havyn's care for what I believe is self-serving reasons. I also think it's significant that Havyn has had more than one doctor (at the state's leading children's hospital) refuse to treat her further. I think her mother is in denial about the state of her condition and is choosing to prolong that denial rather than to prioritize the comfort of her child.
I don't necessarily think it was a wrong choice to place the trach, and I can never presume to know what it's like to be a parent in that situation. I can't even imagine. But I think it gave Brigette an avenue to hope for a miracle recovery in Havyn that just won't happen. She's not living like Havyn's days are numbered, she's living like Havyn is a regular kid with a manageable chronic illness and I don't think it's healthy for anyone involved.
I'm not asking this to be argumentative, I'm genuinely not educated on it and I have a different perspective. How can you tell whether therapy is effectively slowing regression/having any benefit when the level of function was minuscule to begin with? Even in her first 6 months, I don't believe Havyn reached many normal milestones. I personally think that the myriad of seizures and infections in her first year did a lot of damage & put a limit on her cognitive potential in the first place (this is mostly based on anecdotes from my own life).
Is it the kind of thing where you'd rather do it and not need it than to never try at all? It definitely makes sense that you wouldn't want to assume on the side of lesser potential but I'm used to adult PT/OT where they can pretty easily tell whether you're gonna get better. My issue with the therapies is more what I said in my last comment, Brigette seems to have the idea that Havyn can make a big turnaround in her condition with enough help, but that doesn't seem to be the case. I really appreciate your insight, even if it turns out I'm making an ass of myself.
(edited cuz I double posted woops)
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