PKU, what is it? Vital Information about the "NBS" New Born Screening Test

Sickle-Cell: 1 of the tests in the "PKU" (Phenylketonuria test) or NBS "New Born Screening Test, tests for the presence of Sickle Cell Anemia- the "sickle" cells are the ones that are not round. As you see here. Anemia is: a condition marked by a deficiency (lack of) of red blood cells or of hemoglobin (the protein which helps carry oxygen in our blood), resulting in pallor (an unhealthy pale appearance) and weariness (tiredness). www.fruitofthebelly.com

The PKU is just one of the many tests done in the comprehensive Newborn Screen, aka NBS

Although people who've been working in newborn health care for a long time may refer to the Newborn Screen as "the PKU" because that was the first test done on newborns and because that is often more meaningful to parents than "the NBS" or "the Newborn Screen", they usually mean the Newborn Screen, and they are often referring to the heel stick done to collect the specimen that is sent to the lab to perform the Newborn Screen test.  In fact, although the PKU disorder is one of the most important tested for in the Newborn Screen, hypothyroidism is the most common.  If you, as a parent, have been told that your child has an unusual result from the Newborn Screening, please consider the following: 1) In many states, including California, the Newborn Screen was just recently expanded to include testing for 76 conditions.  For many of these conditions, researchers are still working hard to determine normal values, so some normal babies with borderline results will require further testing just to confirm that everything is normal.  2) Even if there is a definite problem, it is most likely that the problem is something other than PKU.  If you're not sure what the exact concern was, you can ask for a copy of the lab results from the Newborn Screen and discuss them with your baby's health care provider.  The really happy news is that most conditions detected by the Newborn Screen are treatable so that your baby has a very good chance of living a normal, healthy life.
Here is the California booklet, Important Information for Parents about the Newborn Screening Test.

---

The Scandal of the Heel stick for the Newborn Screen

Doing a heel stick for the newborn screen is so unpleasant for the technician that few will volunteer for the job.  The best way to clear out a lab is to announce that you need someone to do a NBS heel stick - suddenly everybody needs to go to lunch or wash their hair.  Imagine what it's like for the newborn!
If this brutal heel stick were truly necessary, our society could justify the short-term trauma with long-term health benefits.  However, it doesn't take much thinking to realize that the primitive heel stick hasn't changed in some thirty-odd years, and there's got to be a better way.  Scientists can clone farm animals and send humans into space, but we're still slicing and dicing newborns' heels to test their blood for various very rare metabolic problems.  Medicine has already developed tests to assess the newborns blood for glucose levels and signs of infection with a much smaller amount of blood.  Why are we still having to slice a baby's heel open and milk the baby's leg to fill five one-inch circles with baby's blood?  [The alternative to milking the leg is to use a scalpel to create such a long incision that it bleeds freely.  This incision is relatively painless, and the technician doesn't need to milk the baby's leg in a painful way, but the incision is the equivalent of a two-inch long incision on an adults heel.  After seeing this technique performed, I was wondering when they were going to suture the cut.  This has got to be painful in healing.  Other practitioners use the scalpel to create a deep puncture wound that can actually cause long term bone or nerve damage.]
I'm not sure, but I suspect that much of the reason we're still using primitive technology is that the Newborn Screen Programs are generally state run and so lack funds for research and development of more humane techniques.  Some soft-hearted doctors have invented heel-slicing devices that are somewhat more humane - they use a small spring-loaded scalpel to slice the surface rather than a lancet to puncture the tissue; this is less painful and causes less physical and emotional trauma.
But the basic question is why our technology can't perform the newborn screen with a much smaller amount of blood.  We can send vicious criminals to the gas chamber on a single drop of blood - why can't we do better than this for the most fragile and precious members of our society?
I include this opinion piece here to try to start some intelligent dialogue among parents and care providers.  Let's find a better way for our babies!
[As an interesting aside, you'll hear many health care professionals downplay the pain to the baby of having a heel stick done - these are often people who don't actually perform the procedure themselves, but that's beside the point.  However, once trans cutaneous methods become available, suddenly everyone proclaims that heel sticks are actually painful for the baby.

------------------------------------------------------------------------------------------------------------

Introduction to the "New Born Screening test" or PKU is covered in my Childbirth classes- here at Enlightened Birth & Doula Services. However if you would like a free digital copy of the States explanation of the test, please just let me know. I'll happily email you a copy. Also, some alternative information that will help us push for a less violent test on the newborn. It's a possibility that at least 1 of the tests can be done from the initial cord bloods. The good news is that if you feel you'd like to get this test done because you have concerns, you can get it done ASAP at any time through your pediatrician's office or current healthcare provider. There's also rumors that perhaps parents can get tested for the genetic disorders this test screens for on baby, to see if either parent is a carrier- if not, then you have a little more data to base your decision on, as the likely hood of the child having them decreases.