Not that I have any say in the matter... I am only the Mother you know....
Now why, you ask, would I be against Newborn Screening?
First let me clarify, I don't think they should eliminate it entirely just be more selective on which tests they include.
My Argument:
Aside from the fact that the lovely PKU is oh so fun for our little ones, the results can be very unnerving AND ambiguous...
About a week ago I received a letter from the Health Department informing me that Isaiah had an elevated IRT for CF. Does this mean he has Cystic Fibrosis? No, it just means he MAY have it.... Talk about worrisome... so they have to his blood for DNA analysis. They tested his blood for the most common gene mutations (alleles) know to cause CF in Utah... He came back negative.... Good news right? Well it would be but I is from Florida... They have an entirely different set of "common alleles". And even if he tested negative for those there are still the other 1500+ alleles that can cause CF to worry about...
So what does this all mean?
Well it means for a week I have researched CF and it's symptoms... read into every "might-be symptom" I has, called the Health Department twice (oh so helpful, but that is another story) and waited to hear from my Pediatrician on what the next step is.
He most likely DOES NOT have it but I am still worried. 1 in every 3500 Caucasian babies is born with it but only 1 in every 45,000 African American babies have it.
So why I wish the CF screen (which only started being include June 1st of the year)was NOT included in little I's newborn screening?
There are many false positives (especially in the African American Population)
Most babies who have an elevated IRT do NOT have CF. (so we all get to worry together I guess)
It is unknown if early detection can even help with the prognosis
And Finally....
Unless they are willing to run all 1500 + alleles, not just the "Common Utah" ones, The test should not be included....
I just worries parents for a 5 % chance there child may have CF.
So what do you think?
5 comments:
I'm with you, its just like all the tests they want to give when you are prego, like it would change the way you love the baby or something. Why give a test that gives more incorrect results than correct ones, oh, I know to charge us for them!
I am a believer in staying away from tests that are inconclusive and just stress you out. That is why I never do the tests when I am pregnant. Let me take it as it comes not worry about it and have it never come.
So I totally see your side of the story and couldn't imagine what that must be like to have to deal with but working in the nsy I have seen it do its job. We have been able to catch babies that have tested positive (not for CF but other things) that have been able to help the baby. So I think it is an iffy subject one of those fine lines that will always go either way :)
Our nephew tested positive for CF, too. Ryan and Penny were told he absolutely had it and to start making plans on how to best help him. For about the first month of his life, he had CF. Then all of a sudden, they did another test and surprise! He didn't have it after all! Talk about a lot of worry for nothing! I'm sure they serve their purpose somehow and in some cases, but those tests really can be misleading a lot of the time. Good luck!
I don't know specifics on this particular test, but it gets me thinking. Was this test mandatory? And if so, why? I know a lot of physicians perform these tests for a lot of different reasons, and I wish the one and only reason was in the best interest of the child. Unfortunately, because the tests initially are harmless to perform, doctors feel ok to run them, especially when insurance companies refuse to reimburse them if certain tests are not run. I am not saying Isaiah and you were given the run around, I am just concerned that healthcare is broken and possibly headed down the wrong path if the government becomes the deciding factor as to what tests should be required.
Soapbox... over.
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