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?
