Update - There is a new device for getting blood from the baby that many midwives say is significantly more humane than older methods. It's the Tenderfoot device, and more comments are recorded in the Midwife Archives section on Newborn Screen/PKU/Heelsticks. After I've had a chance to try them out, I'll revise these pages accordingly.
Typically, the blood sample is taken from the baby's heel by means of a heelstick. This is a procedure in which a small blade is jabbed into the baby's heel so that drops of blood will collect and drip onto the test paper. The test paper usually has five one-inch circles which must be filled with blood; this can take 30 minutes in a dehydrated baby at 24 or 36 hours, or it may take just a minute or two in a well-hydrated baby at day 5 or 6.
[Newborn Screening
Program FAQ from the California Department of Health Services and their
information page - About
the Newborn Screening Test: Important Information For Parents.]
How do you compare the certain pain of a heelstick to the 1 in 4000 chance that the baby may benefit from this test? If you could somehow connect all the risk with all the benefit in one baby, what would it look like? Suppose each baby who would benefit from this test would only benefit if they had 4000 heelsticks? 4000 heelsticks is about one heelstick a day for each day of the first ten years of a child's life. What would that baby choose? Having seen a number of horribly traumatic heelsticks, I think the choice I would make if I were that baby would be to live a life with the consequences of hypothyroidism or retardation from PKU rather than to live each day in dread of the next torture session. But this choice changes if the heelstick can be done more humanely.
My thoughts on this subject change frequently, and I cannot pretend to know the answer for parents making this choice for a specific baby. Right now, if I were making this decision for my own child, I think I would choose to have the heelstick done to collect blood for the newborn screen only if the heelstick can be done humanely. This is ideally a heelstick done at day 6 by someone who is willing to take the time to warm the baby's heel and wait for the baby to be in a sleepy state so that the experience of pain is minimized.
Some midwives claim that the test can be performed with very little
discomfort to the baby. The
process they describe involves feeding the baby and warming the baby's
heel so that the blood flows easily; this approach requires about a half
hour of preparation, and the stabbing/bleeding event takes relatively little
time. If you are taking your baby to an institution where the practitioners
do not have the half hour to spend warming the baby and waiting until the
baby is fed and relaxed, you can make a point of doing this yourself before
the test.
In addition to the direct physical risks, there is a secondary physical risk in disruption of the breastfeeding relationship. If the heelstick is done when the baby is quite young, the trauma caused by the heelstick could cause difficulties with breastfeeding and deprive the baby of the superior immunological and nutritional qualities of breastmilk. This risk can be minimized by postponing the heelstick until the mother's milk has come in, and the mother/baby breastfeeding relationship is well established (usually by day 5 or 6).
One of the risks that standard medical research tends to overlook is the risk of emotional trauma to the baby caused by a brutal, prolonged heelstick. In the first hours after birth, the baby is making a number of physiological adjustments; in particular, the baby must start getting all its fluids from the liquids ingested into the stomach instead of from the umbilical cord. During the changeover period in the days immediately after birth, it is very common for a baby to be mildly dehydrated. Although this mild dehydration is not usually a threat to the baby's health, it can make getting a blood sample from the heelstick very difficult because the blood is not flowing freely. When caregivers share their "secrets" to getting blood from a newborn's heel at 24 or 36 hours, they are usually talking about stabbing deeper or more times in order to get the blood to flow more freely or more quickly.
Despite repeated, deep stabbing, getting a blood sample for the newborn
screen from a dehydrated baby at 24 or 36 hours can take up to a half hour
in which the baby's screams indicate that the baby perceives this procedure
as very painful. Given that this pain is being intentionally inflicted
by another human being, this may seem like brutal torture from the baby's
point of view. For a baby who is only 24 hours old, this can represent
2% of the baby's entire extrauterine life. Given the way in which
humans tend to remember traumatic events, this kind of trauma very early
in a baby's life can alter a baby's behavior or future emotional development.
I have also seen firsthand how this experience affects the mother-baby
bond; mothers watching their baby tortured must disconnect emotionally
from their baby in order to remove themselves from the intense pain.
I cannot imagine how much the baby's trust is damaged by having this test
performed while her mother does nothing to stop the pain.
[Pioneering work in the field of Birth Psychology and Birth Trauma is being done by members of APPPAH, the Association for Pre- and Perinatal Psychology and Health.] Some related articles and abstracts are available online:
Babies Remember Pain by David B. Chamberlain Ph. D.
My granddaughter Bevin, at age 2, while talking about her birth experience, asked her parents, "Why did they poke me with a thing?" Her mother asked, "What thing?" "Like a pencil," she said. "They hurted me." She was probably referring to the heelstick. . .A couple of pioneering works in the area of infant pain:
Pain
in infancy: neonatal reaction to a heel lance.
Owens ME, Todt EH
Pain 1984 Sep;20(1):77-86
Pain
expression in neonates: facial action and cry.
Grunau RV, Craig KD
Pain 1987 Mar;28(3):395-410
[ NOTE - The State of California's Newborn Screening Program uses normal ranges of test results based on blood obtained with heelsticks only. Thus they would consider that blood for the newborn screen is only appropriately obtained via heelstick. They specifically exclude the use of IV lines or capillary tubes in the collection of blood for the newborn screen. Given this serious restriction, it would be nice if they put more energy into supporting humane collection of blood for the newborn screen by educating parents and healthcare providers about ways to reduce the baby's experience of pain from this procedure.]
The baby's experience of pain caused by the collection of blood may be reduced by drawing blood as in a traditional venipuncture instead and by using topical anesthetic at the site of the venipuncture.
[The
routine sampling procedure for PKU should be changed. Venous puncture is
less painful than heel lancing].
Larsson BA, Norstmo A, Guthenberg C, Olsson GL, Danielsson P, Hagenfeldt
L, Elander G, Larsson A
Lakartidningen 1997 Dec 3;94(49):4625-8 [Article in Swedish]
"Because it is unnecessarily painful, however, this form of sampling
in newborns has recently been questioned. There is reason to recommend
sampling from a dorsal hand vein as the method of choice for PKU screening
purposes."
Venipuncture
or heel lancing for neonatal blood testing.
Rao G
J Fam Pract 1998 Aug;47(2):93-4
"Venipuncture is more effective and less painful than heel lancing
for blood tests in neonates."
Alleviation
of the pain of venipuncture in neonates.
Larsson BA, Tannfeldt G, Lagercrantz H, Olsson GL
Acta Paediatr 1998 Jul;87(7):774-9
"EMLA significantly reduces the pain caused by venipuncture on the
dorsum of the hand and does not complicate puncture of the vein."
NOTE - More skill is required to perform a newborn venipuncture than a newborn heelstick, and this skill level may not be available in all facilities that perform newborn screening tests. Also, according to the California Department of Health Services, blood collected from a dorsal hand vein yields phenylalanine levels lower than if collected from the heelstick; providers interpreting the results of the test must be alert for high levels still within the normal range for a heelstick, understanding that the Program cutoff levels are based on heelstick levels. Thus a sample collected from the baby's dorsal hand vein might be evaluated as normal by the Program but truly indicate a problem. [See Newborn Screening News - Special Bulletin (11/97) ]
Unfortunately, topical anesthetic creams do not appear to lessen the pain of a heelstick:
Does
a local anaesthetic cream (EMLA) alleviate pain from heel-lancing in neonates?
Larsson BA, Jylli L, Lagercrantz H, Olsson GL
Acta Anaesthesiol Scand 1995 Nov;39(8):1028-31
In addition to reducing the pain of the experience itself, the baby's experience of pain may be reduced by swaddling afterwards (and perhaps even during):
Swaddling
after heel lance: age-specific effects on behavioral recovery in preterm
infants.
Fearon I, Kisilevsky BS, Hains SM, Muir DW, Tranmer J
J Dev Behav Pediatr 1997 Aug;18(4):222-32
Some tests are less accurate when done before 5 days of age, and it is often recommended that a repeat test be done at 1-2 weeks of age if the first test was done before 72 hours. Some of the diseases tested for have such obvious symptoms that the baby would exhibit symptoms even before the test results are available (galactosemia, hypothyroidism).
For families that choose to have the Newborn Screening Test performed on their baby, they may want to obtain the maximum benefit for the baby with the minimal discomfort. For these families, the best approach is to locate a sympathetic care provider who will take the time necessary to minimize the trauma to the baby, and arrange to have the test performed when the baby is six days old. Families should make inquiries and arrangements before the birth, as the timing of the tests is important.
Ideally, families could locate a care provider who would come perform
the test in their home, so as to avoid exposing the immunologically vulnerable
newborn to germs in the hospital or provider's office.
Different states test
for different diseases, although all states test for PKU (Phenylketonuria)
and hypothyroidism, and most states test for galactosemia and hemoglobinopathies.
TIMING – Severe cases of PKU can be detected from cord blood; milder cases may not be detected in a breastfed baby until the mother’s milk has been in for at least 48 hours. Levels of phenylalanine in mature breast milk (after several weeks) are so low that mild cases of PKU would not be detected. Some parents opt to have the cord blood tested and then to retest the baby with a urine test at 4-6 weeks of age, figuring that the cord blood test will detect severe cases, and the urine test at 4-6 weeks of age will detect mild cases before they cause permanent damage. (This approach works particularly well for breastfed babies because mature breastmilk is naturally low in phenylalanine; in fact, it is so low that very mild PKU may not be detected at 4-6 weeks. So parents taking this approach may want to consider re-doing the urine test after the baby has started eating solid proteins.)
NOTE - The newest tests for PKU disorder are sensitive enough that they can accurately detect PKU from cord blood. [From the Newborn Screening News, the newsletter of The California Newborn Screening Program, Summer, 1996, p. 7]
Question: How long after a protein feed must we wait before collecting the NBS specimen so that the PKU screen is valid?However, the very next paragraph ignores this information:Answer: A protein feed is not necessary before collecting the NBS specimen. A newborn has been receiving phenylalanine in utero. California's laboratory testing methodology is a very sensitive quantitative one that does not require a further protein challenge. Therefore, follow the guidelines as outlines in this newsletter for collecting specimens after 12 hours of age.
Question: I noticed the NBS specimen collection form has a box for CORD BLOOD, does this mean that we can use cord blood rather than stick the newborns?So, the materials from the state are a little schizophrenic on the subject of cord blood. This is somewhat ironic, because the test that provides unreliable results from cord blood is the test for hypothyroidism, which still provides unreliable results for the first few days after birth, which is when most babies are tested. Waiting two days after birth to test for hypothyroidism doesn't provide greatly increased reliability; test results would be nearly as reliable if all newborn screening were done from cord blood.Answer: NO! You should only submit cord blood to the NBS Program if a newborn has been transfused prior to the heelstick NBS collection. If you still have available a nonhemolyzed cord blood specimen that is also free of clots, you can spot it on the filter paper, identify the specimen as cord blood and report the specimen collection date and time to be the same as the birth date and time. The combination of a cord blood specimen (valid for the galactosemia and hemoglobin screens) and the 24-hour post transfusion specimen (valid for the PKU and hypothyroidism screens) will allow you to obtain a complete screen for a transfused newborn.
According to the California Department of Health Services, galactosemia can be detected from cord blood. [See Newborn Screening News - Summer, 1996 ]
TIMING – The timing is almost irrelevant, as symptoms of the disease
frequently appear before the test results are available. Symptoms
include cataracts, failure to thrive, vomiting, diarrhea, hypoglycemia,
jaundice, liver damage, and an enlarged spleen. Severe cases can
be detected from cord blood; milder cases may not be detected unless the
mother’s milk has been in for at least 48 hours.
TIMING – Newborn thyroid levels fluctuate the first few days, so screening before 72 hours may yield false results. It is possible to test cord blood, although the expected values for T4 levels at birth, 24 hours and 72 hours are all different. As with older children and adults, newborns exhibit symptoms of hypothyroidism, such as low body temperature, constipation, hypoactivity, lethargy, poor feeding. In addition, hypothyroid newborns often have a large posterior fontanelle, respiratory distress, blue skin tone, abdominal distention or vomiting, edema and jaundice after 3 days of age. Programs relying on blood collected before 48 hours will have a false-negative rate of about 10%, i.e. they will fail to detect problems in 10% of newborns. "It is highly desirable that the blood be collected when the infant is between 2 and 6 days of age. . . .6% to 12% of patients with CH are normal on the initial screening test and abnormal on a repeat test." [American Academy of Pediatrics - Newborn Screening for Congenital Hypothyroidism: Recommended Guidelines (RE9316)]
Epidemiology
of congenital hypothyroidism.
Klett M
Exp Clin Endocrinol Diabetes 1997;105 Suppl 4:19-23
Neonatal screening in early discharged neonates mostly is not recommended before day 4.Although the false negatives described above are more serious because they provide a false sense of security, false positives can also create a great deal of stress for a family with a new baby. Testing before Day 6 has a higher rate of false positives because the baby's TSH levels naturally fluctuate significantly in the first few days and may register as abnormally high.
[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.
According to the California Department of Health Services, hemoglobinopathies can be detected from cord blood. [See Newborn Screening News - Summer, 1996 ]
TIMING – Testing can be performed on cord blood or blood collected at
any time.
Information from the Midwife Archives
* Many families may have religious beliefs that prohibit performing a test that causes certain pain and risk of infection in a newborn, even if the test could detect a very rare, preventable disease. Or they may believe that alternative methods of testing or assessing the baby are the best way to fulfill their religious responsibilities to protect their baby from harm.
This information provided by Ronnie Falcao, LM MS