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re: Mom bathes 1-year-old son with rare skin disorder in bleach to keep him alive
Posted on 6/22/18 at 7:49 pm to WestCoastAg
Posted on 6/22/18 at 7:49 pm to WestCoastAg
I guess it would depend on the severity. A quick google search can show that some babies look MUCH worse than others with this.
Years ago...babies were not expected to live long with this at all. Modern medicine has made it possible for them to live longer.
Years ago...babies were not expected to live long with this at all. Modern medicine has made it possible for them to live longer.
2
Posted on 6/22/18 at 7:56 pm to lsunurse
Do you know if this can be diagnosed pre birth?
Posted on 6/22/18 at 8:35 pm to HoustonChick86
Quick google shows a research article saying this...
So looks like it could be possible
quote:
Harlequin fetus is a rare and mostly fatal form of congenital ichthyosis that can be diagnosed by fetal skin biopsy in patients with a family history of the disease. More recently DNA analysis of amniocentesis and chorion villus sampling materials have also been utilized. We report a case of prenatally diagnosed congenital ichthyosis with no previous family history. Diagnosis was mainly achieved by 3D and 4D ultrasonography findings such as diffuse scaling of the skin, digital contractures, flattened rudimentary external ear, nasal hypoplasia, everted eyelids, typical fish mouth appearance, macroglossia, and persistently open fetal mouth.
So looks like it could be possible
Posted on 6/22/18 at 8:37 pm to lsunurse
Thanks. I really didn't want to Google. I don't do well with sick baby stories.
Posted on 6/22/18 at 8:41 pm to HoustonChick86
Yeah this is not something you want to do an image search of then. Many of those poor little babies look like burn victims.
Posted on 6/22/18 at 8:47 pm to lsunurse
Agreed. Poor kid/parents are suffering. I don't wish this on anyone
Posted on 6/22/18 at 8:48 pm to lsunurse
Posted on 6/22/18 at 8:48 pm to DavidTheGnome
God loves the little children right?
Posted on 6/22/18 at 9:16 pm to lsunurse
Is it worth it though? That kid has to be in constant pain.
Posted on 6/22/18 at 9:16 pm to DavidTheGnome
The only solace I can take from the video is that his skin looks much better, although that may typical. I'm just hopefully that's a sign of improvement.
My 21 month old son ended up hitting his head hard on a table this evening, leaving an immediate bump, and nearly splitting it open. He was back to his normal self a minute or two later, but for that little bit of time, I just felt absolutely horrible for the little guy. So if little bump on the head can cause that feeling, I can even fathom what that mother has fine through.
My 21 month old son ended up hitting his head hard on a table this evening, leaving an immediate bump, and nearly splitting it open. He was back to his normal self a minute or two later, but for that little bit of time, I just felt absolutely horrible for the little guy. So if little bump on the head can cause that feeling, I can even fathom what that mother has fine through.
This post was edited on 6/22/18 at 9:18 pm
Posted on 6/22/18 at 9:17 pm to EyeTwentyNole
quote:
God loves the little children right?
This is said with a fundamental lack of understanding of the human condition thanks to the original sin.
Posted on 6/22/18 at 9:34 pm to lsunurse
quote:
this is not something you want to do an image search of
Posted on 6/22/18 at 9:48 pm to Korin
quote:
Is it worth it though?
I believe that is not my call to make though. If I was pregnant and found out my unborn child could have this...I could not in my heart abort the child. Considering my history...it's a miracle in itself that I'm pregnant....I'm not gonna throw away a baby just because they are considered "defective". If I carried the baby to term my job as a mother is just to simply love and care for my baby.
There are articles of people that had this condition ad grew up...one of them is now a mother herself. I'm sure that woman is glad she was given a chance at life. So it shows that there is some hope for these children. Will their lives be like normal, healthy children? No. Does that make their lives less precious? Absolutely not.
Posted on 6/22/18 at 10:26 pm to DavidTheGnome
I see one of the updates on the GoFundMe page suggests that the mother has bought (or is close to buying) a "nano bubbler," whatever the hell that is, and allegedly it will allow them to stop the bleach baths.
This post was edited on 6/22/18 at 10:27 pm
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