System Break-down
On one hand newborn screening has been a great success for public health.  But on the other, especially in the eyes of families whose children are the ones that fell through the cracks, it is a massive failure.  There are numerous problems in the current screening programs.  Although disorder expansion has been the "poster child" for problems in newborn screening, needed improvements are not limited to just adding more disorders to the test.

How Can this Happen . . . Again?
When 9-day-old Tyler died unnecessarily in 1998 from undiagnosed galactosemia, his NBS test results arrived a few days after his death - obviously not soon enough. His parents were told that Tyler's preventable and unnecessary death was so rare - something that "never happens" and has "never happened before." Yet Tyler's tragic story did happen again - not once, but twice, to two different American galactosemia families, in a recent 6-month period. That is, twice that we know of. And in all three of these cases, their disorder was screened for in the newborn screening test. Many ask how this could happen.  These children were lost because their newborn screening results were delayed in one way or another. Precious time can be wasted in many ways.

Time is wasting

"While we continue to talk and talk and talk, children are dying." -Robin Haygood, mother of Ben, who died from undiagnosed MCAD at 2½ years old

Although many state programs are discussing changes within NBS programs, parents feel they are spending too much time talking and not enough time doing.

What We Can Do
It is necessary to improve the existing screening system to make it more effective in protecting the lives of our newborn children.  Efforts must be made to make the system more "visible" to the legislature, which is ultimately responsible for changing and funding the improvements, and to educate parents and professionals that supplemental screening is available.

"In addition, we can turn to the health care industry to step up to their responsibility in newborn screening by demanding that doctors and hospitals offer supplemental newborn screening, use courier or overnight delivery services and treat every screening test as if it was the one," says Tera Mize, co-founder of Save Babies Through Screening.  "It's time the healthcare industry stepped up to the plate and did what we expect of them - to give our children good care."

Every Second Counts
Every second counts in the life of an affected child. It is imperative that newborns are screened comprehensively for inherited disorders without delay and that the tests arrive at the laboratory as soon as possible. Even a minor delay can cost a child his or her life. It is very apparent that every newborn screening test must be treated as if it is the test of a child whose life is depending on it - as this is exactly what the case may be.

PROBLEMS IN SCREENING:

Batching
Numerous collection facilities (hospitals, pediatrician's offices, health departments, etc.) participate in a practice called "batching". "Batching" means they don't send the tests to the laboratory until they accumulate a certain number of tests or they only send them out on a specific day of the week. An example of this is facilities that only send tests when they have at least 10 specimens so they can mail them all at once or if they only mail specimens out on Fridays. This saves cost for postage in the eyes of those who partake in this practice. The practice of batching causes delays in the laboratory receiving the tests, wasting precious time in an affected child's life - time that an affected child may not have.

Delays in Transport
There is also need to devise a better plan for transporting the specimens from the collection location to the state lab where analysis of the tests occurs.  Precious time is also lost due to delays in the regular mail system.  

Use of the regular mail provides no real tracking of specimens and lost tests can sometimes go unnoticed. Tests lost in the regular mail system may never be found. Regular mail is the culprit of why many tests have slow arrival to the laboratory. Some tests have been reported to take weeks to arrive. Tests sent through the regular mail are also exposed longer to heat and humidity, which affect the tests' reliability and accuracy. The majority of states currently use the regular mail in their newborn screening programs. 

Development and funding of a plan for an overnight courier service for transporting the NBS would eliminate mailing delays and lessen the occurrence of tests damaged due to improper handling.  

Some states are already moving to implement changes that will help cut down on mailing delays.  In fact, the state of Wisconsin uses UPS priority delivery for the specimens in their state.  In addition, hospitals in some metro areas voluntarily use courier services instead to help facilitate the arrival of their tests to the laboratory.

Expand the Disorders Screened For
Although every state in the US has a newborn screening program, the disorders screened for in each state's test varies from state to state.  The state in which your child is born will determine what disorders are screened for.  For instance if your child was born in the state of California in the year 2001, he/she would have been screened for 4 disorders.  Yet, if he/she had been born in Massachusetts instead, he/she would have been screened for 28 disorders.

Many parents are outraged that discrepancies such as this exist and are demanding that all states screen for all detectable disorders.  As increasing the number of disorders literally requires "an act of congress" (which can take a long time), private laboratories across the US have started to offer supplemental screening to the public.  Therefore, no matter in which state a child is born, the baby can receive full-spectrum screening.  Click here to find out more about supplemental screening.

Inadequate Education
Most parents, and even some private practitioners (nurses, OB/Gyns, midwives, pediatricians), lack any kind of education about newborn screening.  Proper education would help each understand their responsibility in newborn screening and what they can do to see that it works as it should - every time.  

Distribution of information to expectant parents explaining the screening program and metabolic disorders would help parental understanding of the importance of the testing.

Laboratory Hours Are Insufficient
Improvements need to be made at the state laboratory that analyzes the newborn screening tests, as well.  The present operational hours of most state newborn screening laboratories does not effectively meet the need for the quantity of tests analyzed each year.  By increasing the hours of operation to include night, weekend and holiday coverage, unnecessary delays would be avoided.  Currently, specimens accumulate in most state laboratories over weekends and holidays.  Specimens arriving on a Friday afternoon of a holiday weekend will have to lie in wait until Tuesday or after, wasting days of precious time.  Affected children do not have this time to spare.

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