Preconceived Notions and Infant Heel Stick Screenings: Privacy Rights v. Early Diagnosis
OK, I know what you are thinking. I said I was going to write a post on child abuse prevention since April is the month designated as such, and this does not sound like anything to do with child abuse. Well, maybe it's a stretch, but in my mind it is abusive to refuse to screen your child for metabolic and genetic disorders. On Wednesday, I will have tips and websites regarding child abuse prevention, but I think this is an important issue to think about today. I recently read "The Test That Saved My Baby's Life" written by Kate Ledger, an article about infant heel stick screenings in Parents magazine. The information in this article both surprised and concerned me. I have established that I like to be informed, ask lots of questions and do lots of research about everything in my life; however, I never questioned the heel stick screening done at the hospital within hours of both of my sons' births. I knew why it was done and took it for granted that everyone would want to have such a screen performed on their kids too. I like to cover my bases. This screen covered my bases by informing me whether there were markers of any of the 50 plus metabolic and genetic disorders present in my infant's blood. That is information that I wanted to have. So, it never entered my mind to opt out of this screen. According to the Parents article, there are a growing number of parents that are opting out based on privacy rights. I am a very private person and always very watchful about my family's privacy rights being violated (I know that sounds crazy coming from a person who writes a blog, but it's true!), yet I am even more concerned about my kids' health and any preventative measures I can take to protect them from illness and disease.
A heel stick screen, performed within 48 hours of a baby's birth, can prevent chronic illness, severe disability or even death. It is a simple procedure: Medical staff cleans the infant's heel with antiseptic, makes a microscopic puncture, and draws a few drops of blood onto a piece of paper, making a "blood spot." My experience has been that this procedure is always performed in the middle of the night when mother and child have finally drifted off to sleep, as are the weight checks, hearing screening, pain medicine dispensing, etc. I have never figured out why they do that to a new mom and infant, but nonetheless it is a very important screen and worth being woken up for in the middle of the night.
Statistics show that one out of every 1,500 babies born will develop one of the disorders detectable through newborn screening. Since most newborns appear normal, there is no way of knowing if the child has a metabolic or genetic disorder until outward symptoms appear. By then, it may be too late to halt or reverse the effects. Testing is recommended also because there may be no history or knowledge of genetic disorders within a family.
All 50 states plus the District of Columbia require the infant heel stick screen by law. The number of metabolic and genetic disorders screened for varies by state, with some states testing for 21 conditions and others for 50 or more. The March of Dimes would like to see all babies in all states screened for at least 29 specific disorders, for which effective treatment is available. You can check which tests are routinely screened in your state by asking your health care provider, going to your state health department website or visiting the National Newborn Screening and Genetics Resource Center website.
So, what is the problem? It's the law; it saves babies lives; it's a good thing. Well, there are some organizations that are using scare tactics to get parents to opt out (if that is an option) or avoid, if possible, these life-saving screenings. While states do keep the blood spots for a designated number of years and use it for further research and testing purposes, there is not a giant DNA stockpile of blood spots being kept by the federal government to conduct genetic profiling to be used to discriminate against certain individuals at some time in the future as one group would have soon-to-be parents believe. The Minnesota Department of Health Newborn Screening website provides detailed information about who has access to the blood spots, the vital statistics attached to the blood spots, what is done with them, etc. Minnesota does use the blood spots for genetic and metabolic disorder research, but only under very specific guidelines, including removing all identifying information from the blood spots used. You can check with your state's Department of Health for details concerning your state.
While some jurisdictions do allow parents to opt out of the screening by filling out a form, many states don't allow this. Each state has its own specific requirements. For instance, Maryland actually requires parental consent for the infant screen to be done, but it is the only state with such a condition. If you are concerned about privacy rights, another option is have the screen done, but request that the state destroy the blood spot card once the screen results are returned.
The point is; infant heel stick screenings are too important to skip. I don't think the anti-infant screening organizations are advocating for a child's death or for genetic and/or metabolic disorders to go undetected, but that is exactly what the result of foregoing a screen could be for your child. There are numerous excruciatingly sad stories about normal looking, acting and developing infants and toddlers that died or became very ill due to an undiagnosed disorder that could have been prevented by such a screening. Don't let your child be one of those stories.
I would love to hear any heel stick screening diagnosis and treatment stories. On Wednesday, I will post tips on child abuse prevention and provide a few helpful websites, as I said I would do. Over and out…
* Today's photo was not taken by Darling 1.
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