Preconceived Notions and Infant Heel Stick Screenings: Privacy Rights v. Early Diagnosis

Before your child is born, you have preconceived notions about how you will do things: what your child will and will not eat, drink, play with, watch, wear, etc, etc, etc. For instance, before Darling 1's birth, we thought it was terrible to allow a child of any age to sleep in the parent's bed. We would never consider such a thing. Never, never, never! I don't know how this opinion was formed necessarily, but nonetheless, our child was going to sleep in his crib, period! OK, flash forward, Darling 1 is born (the light of our life!); we go home from hospital; time for bed; feed the baby; change the baby; rock the baby; place baby in crib; go to bed, right? Wrong! Try again, and again, and again. Crying from exhaustion, collapse into bed with child on chest, voila, baby is asleep! And that, folks, is how Darling 1 began sleeping in the parent's bed. Not to say that we did not repeatedly try to get Darling 1 to sleep in his crib in the ensuing months and year; we did. It just never worked until we got him his own bed (not crib) when he was 20 months old. Darling 2 has been better at sleeping in his crib; that is to say, at least he starts out in his crib each night. Of course, at this very moment, as I sit in my bed writing this post, he is sleeping in my bed next to me, having already migrated from his crib. In the end, we did what was right for our family in order for us to get sleep. I'm certainly not saying it is right for everyone, but it was for us. Come to think of it, many of our preconceived, prior-to-birth notions have not stood the test of time. Sometimes we are influenced by the "chatter" of society, religion, politics, celebrities, etc that feed into our need to be "right", accepted, cutting-edge or whatever, but that doesn't mean it is the best choice based on all the facts. And that is what I think is happening when it comes to parents choosing to opt out of the infant heel stick screening.

 

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…

 

Anna

 

* Today's photo was not taken by Darling 1.

 

Comments

[jenny]

Anna-
This was a great article! I am definitely in favor of newborn screening. It's how we determined that Sammy has hearing loss (many states do not require newborn hearing screening, but MN does). We were also able to rule out one of the infectious causes of hearing loss by using the newborn bloodspot that they had saved at the MN Dept of Health. I was so thankful we had done the heelstick test so they had this on file.
Jenny

[Anna]

Jenny
Glad you liked it. I did not realize you were able to use the blood spot in connection with figuring out the origins of Sammy's hearing loss, interesting! Just another reason not to opt out - or destroy the blood spot!!!
Thanks for your comment!
Anna

[M. Gail Stotler, B.S.N., R.N. / Vein Access Technologist]

PLEASE see the Infant Heel Stick WARNING article - it scientifically describes how the current method is not science based and IS causing serious temporary and permanent injuries to the infant. WASPaLM thinks this subject has merit. Please check it out.

The infant heel stick does not have to be painful or injurious. The new method is science based - utilizing, believe it or not, GRAVITY to make for a better bloodletting, better sample and no injuries.

See Vein Access Technologies.com and check out the article.

[Sherin Higgins]

I have mixed feelings now about screening as my grandaughter was hospitalized for 4 1/2 weeks and poked prodded and x - rayed, not to mention, very invasive biopsies and internal testing, all the while, showing classic symptoms of hypothyroidism. The doctors were asked by family members if it could be hypothyroidism, only to be told she tested negative at birth. We did not know at the time that they should be retested as a false negative can show up at birth (but the Drs. should!!!) We were sent home with her on a feeding tube and told she would outgrow it hopefully. The first day home, her mother went online and was horrified at what she found! She demanded a retest be done and she was EXTREMELY hypo! Early diagnosis is crucial, and all she needed was a heel prick and an $8.00 perscription! We are now concerned for not only what damage may show up down the line from later diagnosis, but also from the invasive testing, and toxins that were put into her system! The preliminary results gave the Drs. a false sense of security. Restesting should also be mandatory! Especially when showing symptoms! This has been a horrible ordeal for ALL involved, but especially for our sweet grandchild.