Wednesday, January 18, 2012

what expecting moms should know: newborn screening tests

Let me begin by saying this: I do not believe that my way is the best way for you and your baby. Each mother and father needs to make the right decisions for their child. But, in order to make the right decisions, we all need to have the right information at our disposal. That is why I am writing about these topics. Note: I am not an expert and I am the mother of one child. I know I do not have all the answers. With that being said, please feel free to comment or email with any questions or concerns. I'd be happy to respond!

A few months ago I wrote this post. I will be posting on each topic in more detail over the next month.

Our first topic of discussion: Newborn Screening Tests

The Newborn Screening Test, you may know it as the heel prick test, is done on every infant born in a hospital in the United States. It's a test usually performed between 24-48 hours after birth (but can be done up to 7 days after birth). As the parent, you are not required to be notified of it and no signature or consent is needed from you for it to be administered.

What is it? It is a blood test to determine if the infant has any metabolic diseases or other disorders that are difficult to detect otherwise and can be treated. For a full list of the conditions tested for, click here.

note: Screening tests do not diagnose illnesses. They identify which babies need additional testing to confirm or rule out illnesses. Good screening tests have a low false-negative rate (if the test is normal, the child should be healthy), but may have a high false-positive rate (as many affected children as possible should test positive, even if this means many healthy children also test positive).
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Why should I worry or care? It sounds like a good test When I stated above that the test is administered, what I meant by that is: your baby's blood (your personal property) is taken in order to perfom a test. Once the test is performed, in most states, the blood sample, to include your child's DNA, is stored by the state's health department. That means, the state/government maintains possession of it without your knowledge or consent.

For information on how long your state retains these blood samples, see this chart. Please note that some states, including California, hold blood samples indefinitely. That means for as long as they want to or decide to; most likely forever.

What are they doing with all of these samples? The simple answer is: probably nothing. But in many situations they are being used for experiments and further testing. You can read more here.

What are my options if I don't want the state to retain my child's blood? This answer depends on the state in which you reside. Some states, including Minnesota and Texas, allow you to sign a Directive to Destroy. In those cases, once the blood has been tested, the state health department then destroys the sample (usually within a year).

If your state does not offer such an option, you can opt to have your child's blood tested by a private company. You can discuss this option with your pediatrician before the baby is born (please interview pediatricians ahead of time, more on that later).

We used Baylor Health Care System here in Texas. You can order a Newborn Screening Kit here. They only store the blood samples for 1 year. We had Isaac's blood samples taken at the hospital. The forms were then signed and sent by our pediatrician. All of the information and instructions are in the packet that Baylor supplies. I couldn't find any other companies to perform the test, but I'm sure there are others. If you find one, please let me know! Note: if you decide to use this option, be sure that your pediatrician is on board before your baby is born.

Here's the bottom line on this one: While I may sound like a conspiracy theory nut; suggesting that the government is storing our DNA in warehouses to use as identity trackers, blah, blah, blah, that is not my intention. I am however, saying that the government does not have the right to take your personal, private property, i.e. your child's blood (which contains DNA) without your prior knowledge and consent. In other situations your blood cannot be taken without a warrant. How is this any different? As a parent, I feel that it is imperative that I protect my child in every way that I can. This is one of those ways in which I feel the need to do so.

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For information on other newborn procedures done in the hospital such as eye ointment, vitamin k shot and the hepatitus B vaccine, check back later this month. I had originally planned to discuss those in this post, but there is just so much information to share!

Again, if you have any questions or comments, please leave them here or email me: ihaveapinkbag [at] yahoo.com [dot] com

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