The gentlebirth.org website is provided courtesy of
Ronnie Falcao, LM MS, a homebirth midwife in Mountain View, CA

Newborn Screen/PKU/Heelsticks

Subsections on this page:

• General
• Ethical Issues of Storage of Blood Samples Collected for the Newborn Screen
• Pain of Specimen Collection for Newborn Screen
• Expanded Screening/Supplemental Testing
• Timing of Newborn Screen
• Heelstick Devices/Lancets
• Heelstick Technique and Blood Sample Collection
• PKU / Phenylketonuria
• Hypothyroidism
• Galactosemia
• Using Cord Blood for the Newborn Screen
• Emotional Trauma of Newborn Heelstick

General

The Scandal of the Heelstick for the Newborn Screen

If this brutal heelstick 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 heelstick 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 newborn's 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 adult's 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 longterm 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 healthcare professionals downplay the pain to the baby of having a heelstick done - these are often people who don't actually perform the procedure themselves, but that's beside the point.  However, once transcutaneous methods become available, suddenly everyone proclaims that heelsticks are actually painful for the baby.  See the BiliCheck pages.]

Breastfeeding or breast milk for procedural pain in neonates.
Shah PS, Aliwalas LI, Shah V.
Cochrane Database Syst Rev. 2006 Jul 19;3:CD004950.

AUTHORS' CONCLUSIONS: If available, breastfeeding or breast milk should be used to alleviate procedural pain in neonates undergoing a single painful procedure compared to placebo, positioning or no intervention. Administration of glucose/sucrose had similar effectiveness as breastfeeding for reducing pain. The effectiveness of breast milk for repeated painful procedures is not established and further research is needed. These studies should include various control interventions including glucose/ sucrose and should target preterm neonates.

NOTE - I find that having the baby suck on a pinkie in a STERILE glove does a good job of calming the baby.  There's an acupressure point in the roof of the mouth that generates endorphins.

Research for newborn screening: developing a national framework.
Botkin JR.
Pediatrics. 2005 Oct;116(4):862-71.

"Despite the scope of these programs, the evidence base for a number of NBS applications remains relatively weak."

Faithful challenge newborn blood test laws - Parents argue state-mandated screenings violate religious tenets

Genetic competencies essential for health care professionals in primary care.
Engstrom JL, Sefton MG, Matheson JK, Healy KM.
J Midwifery Womens Health. 2005 May-Jun;50(3):177-83.

 Full-text article

This article reviews newborn screening tests for genetic and metabolic disorders, explores the impact of the tests on the family, and discusses implications for clinicians.

NEWBORN SCREENING REPORT ADDRESSES INCONSISTENCIES AND CONTROVERSIES (from the AAP) - This report addresses inconsistencies across state screening programs; tests are available for about 30 inherited diseases, but few states require newborn screening for them all.  This report also addresses issues of outdated technology and informed consent.

State Newborn Screen Table - a list of the different tests done in each state program.

A Comprehensive Discussion of the Newborn Screen for California  Please note that the state of California states that blood collected in capillary tubes or from IV lines may yield unreliable newborn screen results.

AMERICAN ACADEMY OF PEDIATRICS - Newborn Screening Fact Sheets (RE9632), including a chart of which states test for which diseases.

Newborn Screening for Metabolic Disorders from Neonatology on the Web

List of Oregon Tests Covered in the Newborn Screen

• Hypothyroidism --incidence is 1:4,000. This is a random rather than a recessive disease;
• PHENYLKETONURIA -- one out of 10,000 - 15,000 "caucasian" births (less common in other races) Hereditary recessive.
• HEMOGLOBINOPATHIES -- mainly a screen for sickle cell anemia (SCA). Incidence of 1 out of 400 in African American, lower in other groups; the state wide rate depends on the diversity of the local population... In Oregon it's about 1 out of 15, 000. Also tests for beta thalassemia, or hemoglobin C. (note --- The manual mentions that this is the first screening test which identifies carriers of a trait! What to do with that information is governed by law (families MUST be informed, information kept confidential, documentation of any refusal of genetic counseling etc)
• BIOTINDASE DEFICIENCY -- one out of 60,000.
• GALACTOSEMIA -- two types -- incidence is 1:60,000 for galactosemia and 1:150,000 with galactokinase deficiency. Recessively inherited.
• MAPLE SYRUP URINE DISEASE (MSUD) --one out of 150,000.

Recessive diseases may hide in families for generations, never exhibited until the "right" (wrong) partner comes along. A negative family history and several healthy children is not a guarantee of protection. Add the fact that genetic mutations can crop up and a family with no history of disease suddenly can find itself with a sick member.

Some families will look at the raw numbers and decide the odds are steep enough to forego screening. But I would hate to see them rely on their number of previous healthy children.

Science 10 April 2009:
Vol. 324. no. 5924, pp. 166 - 168
DOI: 10.1126/science.324.5924.166
 
Prev | Table of Contents | Next
News Focus
NEWBORN BLOOD COLLECTIONS:
Science Gold Mine, Ethical Minefield
Jennifer Couzin-Frankel

Health agencies launched a system 40 years ago to identify babies at risk. Now there are millions of blood samples in files that researchers want to access, raising public concern.

Ethical Issues of Storage of Blood Samples Collected for the Newborn Screen

NEWBORN BLOOD COLLECTIONS: Science Gold Mine, Ethical Minefield by Jennifer Couzin-Frankel [You can purchase the article or listen to the free podcast.]

Science 10 April 2009:
Vol. 324. no. 5924, pp. 166 - 168
DOI: 10.1126/science.324.5924.166

Health agencies launched a system 40 years ago to identify babies at risk. Now there are millions of blood samples in files that researchers want to access, raising public concern.

Pain of Specimen Collection for Newborn Screen

Heel lancing in term new-born infants: an evaluation of pain by frequency domain analysis of heart rate variability.
Lindh V, Wiklund U, Hakansson S.
Pain. 1999 Mar;80(1-2):143-8.

In conclusion, the squeezing of the heel is the most stressful event during the heel prick procedure.

Physical Contact Reduces Pain And Anxiety In Newborns - full text "

Expanded Screening/Supplemental Testing

Private Sources for newborn MS/MS screening:

New technologies allow for the screening of more disorders and/or the screening of the basic set from a smaller blood sample.  Here's some information from PerkinElmer Genetics (formerly  Pediatrix Screening, Inc. and Neo Gen Screening).  Their StepOne® can identify a child's risk for more than 50 disorders of body chemistry.

Pediatricians' attitudes toward expanding newborn screening.
Acharya K, Ackerman PD, Ross LF.
Pediatrics. 2005 Oct;116(4):e476-84.

"For each condition, 8% to 41% of physicians would personally choose to test their own infant."

CONCLUSIONS: Most physicians support diagnostic genetic testing of high-risk children but are less supportive of expanding newborn screening, particularly for conditions that do not meet the Wilson and Jungner criteria.

STUDY ASSESSES EFFECTS OF EXPANDED NEWBORN SCREENING

"Despite expanded newborn screening's apparent positive impact on the health and well-being of infants with metabolic disorders and their families, questions remain," state the authors of an article published in the November 19, 2003, issue of JAMA, The Journal of the American Medical Association. Many states are now using tandem mass spectrometry, a new procedure that screens for many disorders with a single evaluation, to expand mandated newborn screening. The study described in this article was designed to assess the effects of expanded screening for biochemical genetic disorders on child outcomes and parental stress. The study compared newborn identification by expanded screening with clinical identification. The study also assessed the impact on parents of a false-positive screening result (compared with a normal result) in the expanded newborn screening program.

The study drew from a cohort of children who were identified as having any of 20 biochemical genetic disorders between February 1999 and June 2002, and who were evaluated by December 2002. The sample included 50 affected children identified by the New England Newborn Screening Program in Massachusetts and Maine or by a private screening lab in Pennsylvania and 33 affected children identified clinically from any New England state. In addition, 94 children who had a false-positive result in the expanded newborn screening program and 81 unaffected children who had normal newborn screening results were enrolled. The children received a standard medical examination. Their medical records were obtained, and measures of child functioning were assessed. A total of 254 mothers and 153 fathers were interviewed and completed the Parenting Stress Index (PSI).

The authors found that

* Twenty-eight percent of children identified by newborn screening required hospitalization at least once within the first 6 months of life, vs. 55% identified clinically.
* One child identified by newborn screening functioned in the range of mental retardation, vs. 8 children identified clinically.
* Mothers of children identified by newborn screening reported significantly lower overall stress on the PSI than mothers of children identified clinically; however, fathers of children identified by newborn screening and fathers of children identified clinically reported similar overall stress levels.
* Twenty-one percent of children in the false-positive group were hospitalized, vs. 10% in the comparison group.
* The PSI scores of mothers in the false-positive group were significantly higher than those of mothers in the comparison group; mothers in the false-positive group also scored higher on the parent-child dysfunction subscale than mothers in the comparison group.

"This study highlights some of the challenges to current newborn screening practices," the authors conclude. The findings demonstrate the need to educate parents about newborn screening before the birth of their child and the need to educate primary care and other health professionals about metabolic disorders.

Waisbren S, Albers S, Amata S, et al. 2003. Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. JAMA, The Journal of the American Medical Association 290(19):2564-2572.

Some Progress!!!  "MS/MS can reliably analyze approximately 20 metabolites in one short-duration run (i.e., ~2 minutes) and provide a comprehensive assessment from a single blood-spot specimen."

Using Tandem Mass Spectrometry for Metabolic Disease Screening Among Newborns A Report of a Work Group

Appendix Synopses of Selected Papers Presented at the Tandem Mass Spectrometry for Metabolic Disease Screening Among Newborns Workshop, San Antonio, Texas, June 2000

Timing of Newborn Screen

Balance of Risks and Benefits

We took the opportunity to send some of the blood for typing, so we already know her group if ever she needs a transfusion. [Ed.: Blood typing can be done very easily at the birth by drawing blood from the umbilical cord and/or placenta, even after the placenta is separated from the baby.]

Absolutely everything that happens to a newborn is putting something into its emotional system that will indeed last a lifetime.  The studies done on circumcision pain show that severe pain in a baby's first days does have long-term consequences, and they're bad.  This is important to remember when you're trying to assess the balance of risks and benefits of any procedure done to the newborn.  Fortunately, babies cry to let us know clearly when they're in pain.

In the U.S., the hospital routine is to do the "PKU" just before the baby is discharged.  This tends to be at around 36 hours, and this timing is pessimal - the baby tends to be very dehydrated, so it can take quite a long time of stabbing the baby (up to a half hour) in order to get the necessary blood samples.  Nursing often isn't yet well established, so it can't always comfort the baby, and the trauma of a half-hour of torture can disrupt the beginnings of a good breastfeeding relationship.

In addition, when done at 36 hours, there's still a fairly high false negative rate for congenital hypothyroidism (6-12%).

All of this is to say that the timing of the PKU is critical.

Having done and seen too many traumatic PKUs at 36 hours, it's clear to me that the very small benenfit isn't worth the certain trauma to the baby's psyche and the breastfeeding relationship.  In addition, the false sense of security from a negative result may cause the parents and the midwife to discount early signs of hypothyroidism that was missed by the test.

And . . . this balance shifts dramatically when the PKU is done at 6 days . . . the optimal time in terms of accuracy.  Many midwives do offer good evidence-based care in this regard, and they wait until the baby is about a week old.

But sometimes homeborn babies are transported to the hospital or taken to see the pediatrician before 6 days, and there can be a lot of pressure from the state to get a newborn screen done before the baby leaves their clutches.

I agree that there is value in doing the newborn screen when the trauma can be minimized and the accuracy maximized.

It's great to have the baby's blood type, and this can also be gotten from cord blood.  Actually, cord blood will also detect the most severe cases of PKU, but it will miss the milder cases. Then again, breasted babies receive such low levels of phenylalanine in the breastmilk that milder cases of PKU may not be detected if the baby is already getting mature breastmilk.  The issues are complicated.

I would say the info from the hospital is wrong. Most of the new tests are accurate after 24 hours, they are testing the marker differently now. But the test is now independent of feeds. I would ask the actual lab doing the tests what they are using etc. as it probably differs somewhat from state to state etc. Information like that will just convince people they should formula supplement in the early days.

If this is so, why does my state require two tests? The state officials told me it is because the first test done at the hospital at 24 hours is not accurate and that a second test is very important. The guidelines for the home birth babies is a first test at a week and a second test at 4-6 weeks old. The state actually seems happy that we wait a week for the first test and never give any of the parents who refuse the second test a problem....unlike the hospital babies who they follow through with until the second test is done.

The lab that does our testing is in Oregon, and I believe it is the western regional testing site....and all they do is metabolic screening tests.

Ok, so now I feel like I'm really off the mark. We have always told moms that the reason for waiting to do a PKU was because the milk had to be in and the baby on protein >24h. Now I read the following. I read this post (below) on the perinatal nursing list. So what is the right answer?

concerning a discussion on PKU testing:

Actually, I don't do them at all right now since I'm not working yet since the move. [GRIN] But at my last facility, we were told by the CA Dept. of Health, whichever bureau was responsible for the newborn screening, that they can be accurate as soon as 6 hrs. after delivery, as long as the baby has had a breast or bottle feed to receive protein. (And yes, colostrum is highly concentrated protein, despite the fact that a lot of our staff did not think it sufficient.) Our neonatologists and pediatricians struggled with that one, though, even after a good lit search was done that seemed to back up the health dept. guidelines. So we compromised and did them just prior to discharge-- anywhere between 12 and 24 hrs. I don't have the citations now, since moving, but I was convinced.

The book I have "The Wisconsin Health Care Professionals' Guide to Newborn Screening" says that the following tests may be affected by timing:

• Congenital Adrenal Hyperplasia - False positive results may occur if sample is collected before 24 hours of age.
• Congenital Hypothyroidism - Needs to be at least 24 hours of age.
• Galactosemia - Needs to be at least 24 hours of age. The effects of feeding is minimal. They say free galactose levels are somewhat dependent on a lactose load before sampling, but at birth classical galactosemic babies have elevated galactose-1- phospate levels. They say they can detect galactosemic babies in the absence of a lactose load.
• Phenylketonuria - Needs to be at least 24 hours of age. There is a minimal feeding effect here too. Without typing the whole thing out, it looks to me like the baby having fed would increase the rate at which they can pick up this disorder by a little bit.

1. NewBorn Screen, as you all know, does not screen just for PKU.
2. PKU is not a time sensitive test(within reason), it is necessary yes/and no for the baby to digest protein for the test to be accurate.... that has changed dramatically. Now let me explain, even 7 years ago when i met with the newborn screen board they said that the PKU would most likely be accurate even if the baby had not fed. Only a few false positives would be an issue with a baby that had not digested protein. I was told that the tests they were (then) using were increasingly sensitive and that they were more concerned that the test be done earlier for the sake of the other 5 tests -two of which(Lewis and I remember to be) critically time sensitive. Those being Galactosemia(24 to 48 hour time sensitive) and Congenital hypothyroidism(this is not always critical in time but can be), the other tests which i do not remember the time period on them are Maple Syrup urine disease, Biotinidase deficiency, Homocystinuria and of course Phenylketonuria.
3. so the importance of timing is not the PKU but the other screens. I was requested by the board to ask the midwives to do the PKUs on the 24 hour visit if they would-I was taught at the Maternity Center El Paso TX to do them at 5 days so that is what I had been doing for years.
4. they said it was better to get the screens in and warn parents of the possibility of false positive, which of course i did already adamantly warn my parents that for every positive PKU that came back fewer than one in fifty would be positive and/or they just screwed up at the lab and dropped the thing on the floor and wanted a new sample but never ever to worry if it comes back positive first time.
5. Now here is something that I bet some of you don't know!! They were quite concerned that many of the homebirth parents were not doing PKUs-the other midwives were having only a 50% "compliance" rate. I explained that that depended on the midwife and how they present the information, my clients did them,(i also am proud of my method so the baby doesn't cry) i only had 3 not do a PKU in my entire practice. But they wanted to know how to get the folks to do them. Well I explained that most folks don't want to "stick" their baby after this nice peaceful homebirth (one of the reasons i hated having to do them earlier than the 5 days) one of the pediatricians piped up that they could just do the test on the cord blood!!!!!! I asked why in the world they did not do that anyway??? He said because the test was more expensive that way- All of something like 30$$ vs 12$$. So I passed that on to the parents and local midwives. It needed to be set up with the hospital ahead of time-but these folks were so concerned to be sure every infant was screened /they said they felt that if parents felt that strongly then they would waive the fee. So anyway you all might want to contact the newborn screening dept where you are and check out the cord blood test and the fact that this was 7 years ago i am sure the test are even more advanced, especially the sensitivity of the PKU.

It was a while back but i found myself one morning facing a whole board of medical "experts" who had gathered to examine the state newborn screening program. I thought i had been invited to talk to a woman Carol Walters who was director of genetic screening and the program coordinator for Newborn Screening Program(she liked homebirth and me). I walked in the room-had been called to take the place of another midwife who was at a birth and there i was at round table of 15 to 20 medical practitioners/pediatricians/neonatologist etc. all meeting concerning the re-organization of the newborn screening of the state!!!

I spoke with the director of medical genetics and the newborn screening laboratory for Childrens Hospital of the University of Pittsburgh Medical center. Dr Jan Bruck. I spoke at length with her about newborn screen and performing PKUs. So the good news is that was correct that PKU's can be done on cord blood!!!!!! Now let me qualify that. PKUs done on cord blood will miss a very rare PKU baby/the more mild case. So The Newborn screen dept suggests that for parents who do not want to do a heel stick on the babe that a safe and non-traumatic way to screen adequately is to use cord blood directly onto the card. A severely affected infant will show positive for PKU with cord blood, the cord blood PKU card should then be followed by a PKU urine test at 4 to 6 weeks. Dr. Burke assured me that then you would catch the otherwise milder case of PKU that may not be picked up by cord blood. Now another possible scenario she mentioned is that the mothers blood could also be drawn at birth and fill a separate card with. You would then need to ask the lab for numerical values for the assay on the PKU. Should the babies numerical value exceed the mothers even if they are within normal limits this would be suspicious. And another PKU test should be done. This would not seem to be the choice of practice since Dr. Burke seemed to think that the cord blood test combined with PKU urine test at 4 to 6 weeks was as accurate.

Perhaps if you were concerned about loosing track of the parents for some reason this could be requested. Most of the other 35 (yes she said 35) tests they now do should be fine on cord blood, but I would like to call her on Monday to verify that again, she did say so but I was not as specific as I would like to have been. I am also going to have her fax me information and studies.

A couple of other interesting things that she mentioned: she in 25 years has never seen a positive African American PKU babe.

PKU if far more common than the one post I read earlier- and of course it is race reference related but it for general numbers runs more on the line more like one in 10,000. Though we can not make a decision base on skin pigment but truly the baby must be lighter" than both parents to suspect PKU, but that is a hard judgement to make.

So I hope some of you find this helpful, it is my experience that the newborn screen folks are genuinely concerned about the lack of "compliance" (ohh how I hate that word-and no I do not think it should be a law) with the out of hospital birth parents. But I also do think there is a misunderstanding about the "PKU" aspect of the test. This is not their greatest concern but they are highly concerned with catching a rapid deadly diseases early like galactosemia or severe cases of congenital hypothyroidism. All of which the cord blood would be accurate for. PKU does tend to have other symptoms and most home birth parents do see a pediatrician or family doc at some point who may suspect/or you yourself as a midwife may suspect the baby is in trouble with phenylalanine disorder. So the PKU should be represented as a screen for numerous metabolic and other disorders-all of them rare but some very dangerous.

Heelstick Devices/Lancets

The devices listed here cannot cause nerve damage because they can only penetrate a pre-measured depth to the level of the capillaries only.  It is not only the nerves that you have to worry about. Because the old-fashioned lancets are used "free-hand" so to speak, the risk of inadvertently penetrating too deeply and hitting a tendon/nerve is great as is the risk of a needle-stick accident to the person drawing the lab and/or the baby, baby's sibling, etc. .  Believe me, there have been several law suits won against the use of lancets (though I admit they were hospital based cases as homebirth families are not prone to sue,...Thank God.) These devices cost more than freehand lancets, but they are safer and cause far less pain to the baby so for the extra $2.50, it is a small price to pay.

Tenderfoot - New Technology Makes Heelstick Bearable to Baby and Midwife As Well

Here's their Skin Incision Products Catalog with the technical specifications for the different devices.

BD Genie™ Safety Lancet - this works great for me!  I choose the size depending on the baby's weight.

BD QuikHeel™ Safety Lancet.

Nicky® & Little Nicky® Infant Heel Incision Devices - lowers cost versions of the Tenderfoot.

Heelstick Technique and Blood Sample Collection

Infant Heel Puncture from Alliance Laboratory Services

Newborn Capillary Blood Collection Methods Using the BD Microtainer® Quikheel™ Lancet

The baby I did a PKU test on last week slept through it - honestly!!  I've never had one sleep through before, but this one did.  I'm now using the Tenderfoot and it bleeds really well, esp. if the foot is warm.  I use a wet disposable diaper, heated VERY briefly in the microwave (be sure and check temps before you wrap the baby's foot!) around the foot for at least 5 minutes (usually while I'm filling out the form).  Then mom holds the baby upright over her shoulder to let capillary blood flow downwards while I do the "blood-letting."  Usually, babies object briefly to the poke, but then settle down quickly.  I don't have to squeeze or milk or anything using this technique.

I do not know why I had so much trouble with them, I bought them from Moonflower (years ago) and they are available from Cascade, I do believe, BUT... I could not get enough blood with them, and you only get one shot .  [Editor:  It seems very likely that the author is confusing the Tenderfoot with a Microtainer or Accucheck style spring-loaded pointed lancet.  The Tenderfoot wasn't around "years ago".]  if you need to repeat, the one you used cannot be reset, you must use a new one .  That gets kind of expensive ( I do almost all of my own "pku" tests) .  I never had good luck with the pointed spring-loaded lancets (like the ones for checking blood sugars) .  They only go straight in and straight out and you kind of have to get lucky to hit a capillary in order to get blood. When I was using either of these methods, I had to do repeats (costly and caused more pain to the baby and parents and me).

 I have developed my own technique for using the good cheap old flat lancet .  I simply make a very deliberate cut straight into the heel and as I am pulling the lancet out, I shift it slightly to the side so to make certain that I get a 1/16th or so long slice cut .  I never have to repeat, I get plenty of blood, and many of the babies have only a very slight reaction to the pain of it .  (what a relief) . I always talk to the baby and tell them what I am going to do (they always listen to me - I can tell) and why we are doing it .  I always use a very warm wet cloth around the foot to prepare it, and I always ask the mom or dad to hold the baby like they are going to burp the baby so that the leg is dangling below the heart .

I have tried the tenderfoot, and did not have good luck with it. I know another practice nearby that uses them, and the student I had last year, who had also had a placement there, felt that their method was much harder on the baby too. I usually do a good poke with my lancet, and rarely have to repoke. I find that it is not just the poke, but I seem to have a way of milking the leg to encourage blood flow that makes it fast a therefore less traumatic. Seem to have taught it to the 2 students I've had so far, but I don't know exactly what I do.

For what it's worth, my technique for doing heelsticks (with the Microtainer - which is not a pointed lancet, but a knife like the tenderfoot, except that it can be reused): soak a disposable diaper in very warm water, squeeze it out enough to stop dripping
Swaddle the baby snugly with one foot out, and wrap that foot in the diaper, using the tapes to fasten it around the ankle.
Have mom or whoever is up for it hold baby upright while you fill out the forms.
Explain it to the baby.
Have baby held upright facing you, and (VERY important) don't let the holder flex that leg at the thigh. (cuts way down on blood flow)
After preparing the foot, dorsiflex the foot, place the device firmly against the foot and push the plunger and rock it through about a 30 degree arc before withdrawing it.
Hold the baby's calf and milk it to increase blood flow, try a little firm pressure above and/or below the site if you need to. Never squeeze the heel - causes bruising and may mess up the test (according to our State Lab).
If blood flow slows before all the circles are filled, rub up the puncture site with an alcohol wipe to break up the clot -just be sure to wipe it with a plain gauze before you attempt to get any more blood for the test.
If all else fails, remember it's more humane to do another stick if the first is not flowing well than to keep mashing away at a "dry hole" .

I think these comments are good, esp. holding the baby upright .  We also use the yellow microtainers .  But to warm the foot have found something better .  I buy a box of the handwarmers from Costco .  These are little packs that are to be used in your gloves .  Keep the foot warmer .  Found that wet heat evaporates faster .  The hand warmers are a dry, chemical heat .

I have to agree .  I have settled on the "nasty" steel lancet pokers. Have *never* hurt a baby, but I learned from a master who worked in a nursery for several years, and considered it a failure if I had to poke more than once :) I heat the foot, poke and twist as I'm doing the stab, and the babies, by and large, bleed beautifully .  Very rarely do I have to do it more than once .  However, the other secret is a well-hydrated baby .  Beware the day three baby in a primip .  They just *won't* bleed.

I too use the tenderfoot devices .  I love them!!! They are MINIMALLY painful and get excellent results as they are designed to cut to, and only to, the level of the capillary bed.

The Tenderfoots are SAFER for the baby as well .  There have been several cases of permanent nerve damage to babies who had to undergo repeated sticks for bili levels where the old lancets were used .  Lancets, no matter what the shape, size, etc. should no longer be used .  They are a legal liability even if they are a fraction of the cost .  Because the Tenderfoots have a guaranteed level of penetration, and a protective case that prevents accidental needle sticks, they are the only way to go .  Most of our Chicago area hospitals have changed over to using them exclusively .

We use the tenderfoot, and there is a trick to it .  You have to hold the device firmly to the heel, and then depress the button, but don't pull the device away immediately like you do a regular stabbing lancet .  This produces the best results for me .  I also had trouble with this until someone told me the trick.

I agree...there is a trick to the Tenderfoot .  When used properly, it works great, most of the time in one stick .  You DO have to press very firmly and HOLD it there for a second after popping the button .  When I first used them, I crabbed about them, and I had to sometimes use 3 of them each time until I got the hang of it .  I think I wasn't pressing it firmly enough against the heel to get the poke it is capable of .  But as I do think they are safer and I had heard about the studies citing nerve damage to babies from lancets, I persevered .  You also have to get the right spot on the foot .  Since the casing is rather large compared to a lancet, it can be difficult at first to see that one is poking at the right site .  If used properly, I do think they work great, but I still get an occasional baby that just doesn't bleed .  My method is to first warm the heel with a latex glove filled with water while filling out the paperwork .  A warmed heel definitely increases blood flow .  I never milk the leg .  When I was in training, I observed a couple of midwives who milked the legs, and sometimes, these babies ended up with bruised legs.

With a Tenderfoot, I have noticed that some babies don't even notice they've been poked and don't cry at all (although sometimes it's the crying that makes the blood flow so well!).

Yes! The Tenderfoot has to be used following the guidelines .  Additionally, the device has to be held so that the "slice" is vertical (up and down) on the sole of the foot. It bleeds better that way .  If you hold it so the "slice" is across the heel, it hurts more and bleeds less! At any rate, you will not have to "milk" the baby's leg/foot and it will not cause scarring or nerve damage as the lancets have been known to do!

How to do the Almost Perfect PKU

When I do heelsticks, we warm the baby's heel for five minutes with a warm washcloth wrapped in a disposable diaper. I use the yellow Microtainer Safety flow Lancets available from Cascade. Before I stick, the baby either Mom or Dad holds the baby upright so that the foot is completely down. I press the Microtainer Lancet against the foot hard before depressing the blade. When the blade is depressed, I hold it in position for a second or two. As soon as I remove it the foot starts bleeding like crazy, and I just drip it onto the circles. I never have to squeeze as long as the baby is upright.

How to do the Almost Perfect PKU

1. tell mom ahead of time when you will do PKU and what to have on hand.
2. the things you need, electric heating pad (I almost always used heating pad) or electric blanket, An electric blanket actually does better if it gets really warm, but it is clumsy and if it is summer a little too hot for mom to sit with baby for as long as it takes...but if you are really determined to get the best blood flow it is good.
3. the heel lancet -- now, I prefer the metal single point kind, wish I could remember what they were called -- they have the one sharp point in the middle and the edges are sharp too. The new spring load ones I found to be brutal and I do not like them, as you can not have the human touch with it. Never use the ones that you do a finger stick with, they are too little.....silly they are so little.
4. alcohol and cotton/put chux pad on moms lap in case of extra blood drops.
5. now be prepared to spend at least a half hour on this project. Move slow keep baby and mom relaxed and quiet. Sit mom upright on couch or in bed where she is comfortable with babe in arms. If baby is asleep let him sleep if he wants to nurse let him nurse. Pre heat heat pad/or heating blanket as soon as you arrive to the home. Now take preheated pad or blanket on medium-high. You need to judge the heat carefully. Now have baby wear only a diaper and a long sleeve shirt(to be warm) you are aiming at bringing up the babies body temperature just slightly. A cotton hat can be on baby too only if babe likes them, to help the "cooking" process go faster! (just a little humor). Now wrap the baby snugly but comfortable in the heating pad/blanket from arms down and a comfortably tight around the foot you intend to use. It is best with a heating pad to use a light receiving blanket between the babe and the heating pad/the pad should already have a cover!.( Make sure you use a good, new one, (one that someone has around the house for years could have frayed inside electrical stuff etc.) I always kept my own, though I asked parents to buy one for birth kit-good for after birth contractions and keeping baby warm after birth/and some of you must have also had one at the birth site for warming the receiving blankets....) Now the mom/or you should strategically maneuver her hand inside the whole shebang resting a couple of fingers on the thigh of the leg you do not intend to use. It is very important for both of you to monitor that the baby does not get too hot. Now get the rest of your stuff laid out so that you can act quick once you do the heel stick. I usually laid it down next to the moms leg. You should have wiped the babe's heel with alcohol early before you start heating him. Do it with as little alarm as possible, like warm the alcohol pad first in your hand. Now you sit and wait? How Long? Well the baby will get a little sweaty and feel really warm/not just his leg but his whole body especially from his tummy down, this will also make him very sleepy. When he is a little sleepy, droopy, little puppy probably now nursed, really warm, and totally limp and relaxed, now is the time to move on to next stage-this is necessary for success and TAKES time. The baby's skin should not be so red that you fear you exposed him to enough heat to cause a minor burn-but should be flushed on the leg you have held the heating pad to for procedure. You should have calmly been doing the rest of your normal midwife/mom chit chat during this time to keep the mom relaxed of course speaking quietly(good to have cleared room of all other folks-not good to have the little ones watch-they get bored with the time it takes-so discuss this ahead of time with the parents to have someone to take other kids out of room.)
6. OK time to stick babe. Have mom gently move babe from nursing position to over shoulder position-you can take pad off now (only if ready to do stick right away) nor should you wake or disturb baby/ act slowly but waste no time. DO NOT TOUCH THE FOOT YOU WILL STICK until you do it. Now have card ready on moms lap. Have your hands as warm as possible if you are wearing gloves have held them in the heating pad too just before heel stick or run warm water over them. As soon as you have taken off pad and babe is in position/Mom should be holding babe with one hand under babies bottom and other on back for comfort gently/remember you still hope to have a sleeping baby. Now choose your spot(outside quadrant of heel) put two fingers on babies ball of foot and thumb one inch above heel and slightly without baby waking flex foot for heel stick. Now with the metal lance make the heel stick using the lance at a slight angle. One quick as lightening stick where the main point penetrates and one side point also penetrates not as deeply. As soon as you have stuck the baby do nothing. Back off do not rush to get blood. Do not touch baby let the baby react to the insult with no further interference.

Since I started doing PKUs this way 8 out of 10 babies slept though the whole thing, one would whimper and then go back to sleep and the last would start to cry and we put him to breast and he then nursed through the test.

One birth I did was for a home health care nurse who had to treat neonatal jaundice at home. She did heel sticks for many situations and when I did the heel stick for her daughter without a whimper she was amazed. She asked all the nurses in her home health care squad to come one evening and learn the technique from me. Well I hope someone/or some little baby benefits from all this long winded stuff.

Everyone has a slightly different technique when it comes to doing it, and that you will work out, in the end, what's best for you.  Personally, I don't like to do PKU's while baby nurses, in part because I don't like to hurt babies while they're nursing, and in part because I'm getting older and I need to protect my back, so don't like to do contortionist acts if possible.

I get the baby nicely padded on a table (kitchen table or change table) with blankets and a receiving blanket, and welcome mom or dad to participate.  I tell them that the baby will cry a bit, but that they can give the baby their finger to suck while I'm working, which will make the baby feel better.  I warm the foot well (hot cloth, covered with a plastic bag to keep the heat in), while I'm getting stuff ready to go.  I use plain lancets, not the spring-loaded kind.

Really important points are to do the PKU when the baby is well-hydrated.  I won't do it unless the baby is demonstrating that it's doing okay this way (peeing and stooling well, starting to gain), unless, of course, we're getting to that day 5 point.  Also, be very careful about the location of the heel puncture.  Although the diagram suggests that there is a wide range of possible locations, I find that if you flex the baby's foot, and pick the outer border about a cm above the point of the heel (nice fat pad there), they bleed very nicely, and don't seem to mind the poke too much.  The puncture should be done firmly (hard to do the first few times), but not, of course, with real aggression.  I also twist the lancet almost a quarter turn as I'm poking, which seems to help further with bleeding.  Be very careful not to hang onto the baby's ankle so firmly that you're cutting off circulation....a common beginner's mistake.  Just sort of dangle the foot in your hand.

The baby does cry, of course, but this is where I tell parents to give them a finger to suck, if they want.  I talk to the baby while I'm doing it, too, sympathetically, but not in such a manner as to have the parents think that this is the worst thing that could ever happen.

It takes some experience, of course, but I practically never have to do a heel puncture more than once, and I've often had the whole thing done in well under a minute.  The longer and more drawn out the process, the more tense for the parents (and baby).  I do point out that some babies get royally ticked about having their foot restrained by my hand and that's what's making them cry.

The babies I have done have squawked a little, but settle right down once it's over.  Usually they'll nurse then (which is an excellent opportunity to see how *that's* going).  I always give the baby a nice cuddle after I've poked them and apologize.  Only seems like the right thing to do :-)  I also usually mention at some point that we're being mean to be kind, in the long run. 

I just want to thank everyone for their great advice. I've just come home from a delightedly successful PKU! After warming baby's foot with a heated up oat bag, I decided to get the mom to hold the baby over her shoulder, and held that microtainer pressed down for a few seconds before pulling it away. Baby just let out a little squawk and then went to sleep, and this baby has been so fussy I was sure she'd really complain! She bled beautifully (how morbid that sounds!), I didn't even need to massage her calf at all, just waited for the drops to form and drop down in the circles. Minimal fuss and stress, wonderful! Of course, it could all just be a fluke, but I'll stick with this technique for now and see if that's what works best for me.

PKU / Phenylketonuria

The National Coalition for PKU and Allied Disorders

Congenital Hypothyroidism

Congenital hypothyroid screening using cord blood TSH.
Wu LL, Sazali BS, Adeeb N, Khalid BA.
Singapore Med J. 1999 Jan;40(1):23-6.

[Neonatal screening for congenital hypothyroidism].
Moslinger D, Frisch H, Strobl W, Stockler-Ipsiroglu S
[Article in German]

As TSH is physiologically high during the first 2 days of life, the trend to early hospital discharge will result in a significant increase of the recall rate in future.

Neonatal screening in early discharged neonates mostly is not recommended before day 4.

Galactosemia

False Positives

Yes, we've had two false positives, and each time the Health Dept. recommends bringing the baby to the hospital immediately.  They draw more blood, and results are back in about five days.  They are required to recommend that the babies take a special formula and avoid breastmilk all together.  When I ask, they agree that the baby would really look sicker at this point if it were truly galactosemia.  They have a legal obligation to recommend that the mom stop breastfeeding, but moms can really do whatever feels right for their baby.  However, it is important that they appear compliant and carry the special formula out the door with them so they don't get reported for noncompliance.  What an awful thing if a false positive resulted in the child being removed from the home because the mom continued to breastfeed!

The Tyler For Life Foundation is dedicated to raising the awareness of inborn errors of the newborn.

Regarding the tylerforlife.com site, this is indeed a tragedy. However, I'm not sure I would use this as an example of the importance of the newborn screen.  The baby died at 9 days of age, and not from galactosemia, even though he apparently also did have galactosemia.

Copied directly from the Web site: "His death resulted from e-coli spinal meningitis and septicemia."

The web site does say that babies with galactosemia are more susceptible to e. coli infections.  I haven't tracked down the veracity of that claim, but I can easily see three other factors that were probably more significant than galactosemia:

• Day 1   Hospital
• Day 2   Released to home
• Day 4   Tyler re-admitted to the hospital for jaundice
• Day 8   Tyler released to home
• Day 8   Ten hours later, Tyler becomes critically ill and is re-admitted
• Day 9   Tyler succombs to spinal meningitis and septicemia

He was not breastfeeding, so he had a compromised immune system

He presumably got a vitamin K shot, and recent research shows that higher clotting factors double the mortality rate from bacterial meningitis.

I can easily believe that both the hospital staff and the parents want to believe that he died from galactosemia, rather than consider the more likely factors of a hospital-acquired infection, formula feeding or the vitamin K shot.

I appreciate their dedication to the well-being of newborns, but I'd like to see the zeal directed towards the areas where it can do most good - encouraging breastfeeding, discouraging unnecessary vitamin K and keeping healthy newborns out of the hospitals.

Using Cord Blood for the Newborn Screen

In general, cord blood is not suitable to provide the blood sample for the newborn screen because it is taken before the baby has taken breastmilk (or alternative) into the digestive tract.  Phenylketonuria is a difficulty in digesting the protein, phenylalanine, and galactosemia is a difficulty in digesting the milk sugar, galactose.  The toxic metabolic byproducts cannot be detected until at least 12 hours after the baby has taken in a good feed.

Although the mother's thyroid hormones and TSH do not cross the placenta, the mother's thyroid-stimulating immunoglobulins may cross the placenta and affect the baby's thyroid levels.  This may lead to a false negative on the test for hypothyroidism done on cord blood.  This test actually is not very reliable before Day 4, even though it's routinely done at Day 2 for most hospital births.

Cord blood does provide accurate test results for blood levels that are not affected by feeding.  For example, the baby's blood type can be accurately assessed from cord blood, as well as sickle cell disease and other hemoglobinopathies.

Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies - National Institutes of Health Consensus Development Conference Statement - April 6-8, 1987 - " . . . cord blood samples can be used for neonatal screening [ed. - for sickle cell disease]. The hemoglobin components within these samples (especially Hb Barts) are more stable . . . "

Emotional Trauma of Newborn Heelstick

From a Sacred Birthing Point of View