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Old 06-02-2009, 03:33 AM
 
14 posts, read 13,961 times
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Did you know that there are over 100 disorders that can strike a newborn as early as 1 month of its birth, and in most cases leaving the child in a state of permanent mental retardation, spasticity, or can prove fatal????

However thanks to the innovative tool of neonatal(newborn) screening, newborns can now be screened for the possible occurrence of these disorders, by merely testing their urine. Early diagnosis is a key for preventing the occurrence of such life threatening conditions. According to reports, out of the 1.2 billion population of the Indian subcontinent, the mentally disabled population amounts to 1.1 million. A large portion of this number could have reduced by this simple newborn screening test that identifies the possible occurrence of several metabolic disorders which can be fatal to life.

Regardless of this, parents (and even quite a few doctors) do not offer much support for the mass establishment of such a screening procedure, due to their inability to understand the concept. In addition, cost is also a major concern. However the fact needs to be understood that when one can spend a couple of 10,000s on getting vaccines, or undergoing invitro fertilization, why can't one opt for neonatal screening that does not cost more than 5000/- and can screen for over 100 disorders? Reasons are many, however most of them are baseless.

what do you think...how far should such a procedure be encouraged as a mandatory programme (similar to the vaccines)? What all obstacles do you think will it face, in it being implemented as a mandatory programme? And lastly, your personal perspective upon the effectiveness of the programme.

Last edited by deepak1228; 06-02-2009 at 03:41 AM..
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Old 06-02-2009, 01:18 PM
 
2,861 posts, read 6,260,630 times
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Every state in the US screens newborns for some disorders. The list of disorders varies from state to state, but is primarily focused on diseases which can be reliably diagnosed in the early newborn period and have improved outcome if diagnosed before the infant is symptomatic.

In my state, the following disease are tested for: Phenylketonuria, Congenital Hypothyroidism, Maple Syrup Urine Disease, Galactosemia, Tyrosinemia, Homocystinuria, Congenital Adrenal Hyperplasia, Biotinidase Deficiency, Medium-Chain Acyl-CoA Dehydrogenase Deficiency, Sickle Cell Disorders (SS, SC, S-beta thalassemia), Isovaleric acidemia, Glutaric acidemia type I, 3-OH 3-CH3 glutaric aciduria (HMG), Multiple carboxylase deficiency, Methylmalonic acidemia, 3-Methylcrotonyl-CoA carboxylase deficiency (3MCC), Propionic acidemia, Beta-ketothiolase deficiency, Very long-chain acyl-CoA dehydrogenase deficiency (VLCAD), Long-chain L-3-OH acyl CoA dehydrogenase deficiency (LCHAD), Trifunctional protein deficiency, Carnitine uptake defect, Citrullinemia, Argininosuccinic acidemia, and Cystic Fibrosis.

Every newborn is screened unless the parents object for religious reasons.
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Old 06-02-2009, 05:12 PM
 
Location: Maine
650 posts, read 1,926,865 times
Reputation: 553
Quote:
Originally Posted by deepak1228 View Post
Did you know that there are over 100 disorders that can strike a newborn as early as 1 month of its birth, and in most cases leaving the child in a state of permanent mental retardation, spasticity, or can prove fatal????

However thanks to the innovative tool of neonatal(newborn) screening, newborns can now be screened for the possible occurrence of these disorders, by merely testing their urine. Early diagnosis is a key for preventing the occurrence of such life threatening conditions. According to reports, out of the 1.2 billion population of the Indian subcontinent, the mentally disabled population amounts to 1.1 million. A large portion of this number could have reduced by this simple newborn screening test that identifies the possible occurrence of several metabolic disorders which can be fatal to life.

Regardless of this, parents (and even quite a few doctors) do not offer much support for the mass establishment of such a screening procedure, due to their inability to understand the concept. In addition, cost is also a major concern. However the fact needs to be understood that when one can spend a couple of 10,000s on getting vaccines, or undergoing invitro fertilization, why can't one opt for neonatal screening that does not cost more than 5000/- and can screen for over 100 disorders? Reasons are many, however most of them are baseless.

what do you think...how far should such a procedure be encouraged as a mandatory programme (similar to the vaccines)? What all obstacles do you think will it face, in it being implemented as a mandatory programme? And lastly, your personal perspective upon the effectiveness of the programme.
We had a homebirth with my fourth child and opted not to do the newborn screening tests. As with any "mandatory" program, such as with vaccines, there are usually ways to opt out if you wish.
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Old 06-02-2009, 08:30 PM
 
Location: chicagoland
1,636 posts, read 3,657,201 times
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Quote:
Originally Posted by 2girlsand2boys View Post
We had a homebirth with my fourth child and opted not to do the newborn screening tests. As with any "mandatory" program, such as with vaccines, there are usually ways to opt out if you wish.

I asked at the hospital to "opt out" and they looked at me like I was crazy. Somehow they talked me into doing yet another thing I didn't want to do

I'd do a homebirth for sure if my home was cuter

I'm not sure I like the screening idea. It might effect my child's eligilbility for health insurance in the future. They would have to agree to NOT do so. That's the problem with these screenings for people in general the whole dna thing. Once they know they can use it against you. That's scary.

Those diseases are EXTREMELY rare too. I'm not sure if I'd take the chance to screen for a disease my child probably doesn't have, especially since many of them are passed down and they don't run in my family.
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Old 06-02-2009, 08:38 PM
 
8,938 posts, read 15,865,392 times
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shouldn't affect health coverage in the least as long as you keep coverage in force - by far a small risk when compared to things like cystic fibrosis that have been shown to be much more manageable when found earlier and treatment starts at an early age

sadly, if your child has any of those screened diseases there is a chance they won't live long enough to have their own health care
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Old 06-03-2009, 09:56 AM
 
43,012 posts, read 89,044,931 times
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The option to opt out wasn't even available to me. Mine were tested before I made it to my room from delivery. I wouldn't have objected anyway.
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Old 06-03-2009, 10:59 AM
 
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I opted for some tests, like Phenylketonuria, not for others, like Hepatitis (I had already been screened, so I knew I was negative).
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Old 06-03-2009, 11:03 AM
 
Location: Pittsburgh, PA
2,868 posts, read 8,449,644 times
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Sure...a simple urine test? Why not. The more info I have to prepare myself (and my family) the better.
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Old 06-03-2009, 01:12 PM
 
14 posts, read 13,961 times
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Default Ref: pinetreelover

Quote:
Originally Posted by pinetreelover View Post
Every state in the US screens newborns for some disorders. The list of disorders varies from state to state, but is primarily focused on diseases which can be reliably diagnosed in the early newborn period and have improved outcome if diagnosed before the infant is symptomatic.

In my state, the following disease are tested for: Phenylketonuria, Congenital Hypothyroidism, Maple Syrup Urine Disease, Galactosemia, Tyrosinemia, Homocystinuria, Congenital Adrenal Hyperplasia, Biotinidase Deficiency, Medium-Chain Acyl-CoA Dehydrogenase Deficiency, Sickle Cell Disorders (SS, SC, S-beta thalassemia), Isovaleric acidemia, Glutaric acidemia type I, 3-OH 3-CH3 glutaric aciduria (HMG), Multiple carboxylase deficiency, Methylmalonic acidemia, 3-Methylcrotonyl-CoA carboxylase deficiency (3MCC), Propionic acidemia, Beta-ketothiolase deficiency, Very long-chain acyl-CoA dehydrogenase deficiency (VLCAD), Long-chain L-3-OH acyl CoA dehydrogenase deficiency (LCHAD), Trifunctional protein deficiency, Carnitine uptake defect, Citrullinemia, Argininosuccinic acidemia, and Cystic Fibrosis.

Every newborn is screened unless the parents object for religious reasons.
That is quite a good list. Frankly speaking what I believe is, the more the number of disorders that you can screen your child for, the better it is. And particularly when the tests are being done via only urine sample. By the way, the commonest technology that is currently used to test the newborns is by using their heel-prick blood, a technique that can lead to septicemia. In addition, this technique can only detect a max of 40-60 disorders. However, the one with urine can detect more than 100 disorders. There is a company called Preventine LifeCare in Mumbai which specializes in this technique
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Old 06-03-2009, 01:17 PM
 
14 posts, read 13,961 times
Reputation: 18
Quote:
Originally Posted by 2girlsand2boys View Post
We had a homebirth with my fourth child and opted not to do the newborn screening tests. As with any "mandatory" program, such as with vaccines, there are usually ways to opt out if you wish.
Ref: 2girlsand2boys

i accept that you can opt out of all the medical procedures, and still have a healthy child. However, considering the current global scenario, with so much of genetic, environmental problems around, the probability of "things" going very wrong is extremely high.
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