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I don't understand the point of opting out of a routine testing for newborns. I kind of understand opting out of vaccines. People don't trust them, autism, whatever. But if your child had a genetic disorder that could be treated, why wouldn't you want to find out ASAP and start the treatment?
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.
Ref: miasmommy
How rare do you think is the incidence of these diseases? According to facts, some of the diseases occur at a low rate of 1 in 2000 newborns. And in any case, I believe that statistics has got nothing to do with an individual. If an individual is affected, then he can't come back and question the statistics.
And additionally about the insurance problems, well if you feel that getting a secured insurance is important, don't you think securing the life of your newborn via the screening programme is equally important???
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
Sure...a simple urine test? Why not. The more info I have to prepare myself (and my family) the better.
Ref: Danielle
Thatz the spirit. Perhaps its because of people like you that countries have started recognizing the importance of screening programmes as a mandate...However more effort is required to establish such a programme within countries like India.
How rare do you think is the incidence of these diseases? According to facts, some of the diseases occur at a low rate of 1 in 2000 newborns. And in any case, I believe that statistics has got nothing to do with an individual. If an individual is affected, then he can't come back and question the statistics.
And additionally about the insurance problems, well if you feel that getting a secured insurance is important, don't you think securing the life of your newborn via the screening programme is equally important???
Thatz the spirit. Perhaps its because of people like you that countries have started recognizing the importance of screening programmes as a mandate...However more effort is required to establish such a programme within countries like India.
I work in the medical field...
Seriously though, if I new what problem was going to occur with my newborn,,,why not have the appropriate medical staff standing at my side when I deliver? To intervene right then and there? Give my baby the best chance at beating whatever ailment presents? Of course! Give me all the info I need to prepare myself, my family and my doctor...
another point is that if the child has these concerns they will develop and they will show ....... you'll have to deal with it at some point and probably when they are still very young in age
and when you deal with it you'll still be "in the system" so to speak, so any perceived problems are still going to present themselves as it pertains to insurance, etc
i see no reason to not get as much of a jump as possible
Seriously though, if I new what problem was going to occur with my newborn,,,why not have the appropriate medical staff standing at my side when I deliver? To intervene right then and there? Give my baby the best chance at beating whatever ailment presents? Of course! Give me all the info I need to prepare myself, my family and my doctor...
But for all but about five or six of the disorders they test for it isn't even known whether the treatments help. And many times a baby will test positive but never show signs of serious disease. I've read that there is a fear that children with mild versions of illnesses will be treated needlessly and aggressively for more serious forms and suffering horrible health consequences because of those treatments!
If you look back at the PKU testing some of the babies who tested positive where treated for a disease they didn't even have. In fact they had a DIFFERENT disease where a different MUCH safer treatment should have been used. instead many children suffered because of the "diet" treatment for PKU when they didn't even have it thanks to the test.
IN the 1960s or 70's, every hospital in the country screened premature babies for acidic blood and treated them with bicarbonate of soda.
However it was discovered that babies who got bicarbonate of soda actually did worse and, in particular, had more brain hemorrhages, which can cause devastating brain damage!
And what about parents who are paying a co-pay or out of pocket? These tests can cost anywhere from $70 ot $200 not to mention the cost for uneccesary treatments listed above!
If some of these diseases are genetic wouldn't you see a person possibly in your own family with them? And if you were high risk for passing them down of course it would be benificial to screen.
As long as these tests are NOT mandated I see no problem with a parent deciding it is best for their family/babies.
You can sugar it however you want to...but I personally would error on the side of early intervention and being prepared then nothing at all. Why forgo a simple urine test? A totally non invasive test that could indicate potential problems with a newborn? So what...you have a medical team waiting in the wings to help your newborn if need be...if not, they leave. How could you refuse that help? I would hate to be a mother who just delievered a sick baby waiting a good 5 mins for team to show up and help....that 5 mins could be the difference between a normal healthy baby and one who suffers an anoxic event...no thanks.
I will take my type A information and be ready for whatever is tossed my way.
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Quote:
Originally Posted by deepak1228
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.
Why mandate the testing? I think that many, if not most, high risk pregnancies will have an amniocentesis, but if the parents are of prime age and do not have risk markers, it doesn't necessarily make a lot of sense mandate a considerable extra expense that is prone to false positives and isn't completely without risk.
Last edited by jimboburnsy; 06-03-2009 at 02:46 PM..
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