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PARENTS CORNER • Last updated September 2, 2017

The Price of Life:
Simple Tests Can Save Lives

Information from Parenting Report
by Sheryl Gay Stolberg, and
People Magazine August 2, 2004

You may have heard on television or local print news about the March of Dimes campaign for newborn testing. There are no national standards for testing. The March of Dimes recommends nine basic tests. It is reported that 70% of all babies born in the US, approximately 2.7 million children, do not receive this minimum number of tests.

Since the 1960's all stated perform some newborn testing. The most common congenital disorder is PKU, which can be detected with a heel prick blood test. All states currently perform a heel prick to test for PKU. The heel prick can be used to screen newborns for 60 diseases, but few states test for more than four. California currently tests for four, but has legislature pending to mandate testing for 61.

Activists in the field would like to see the testing greatly expanded beyond the basic nine tests. We have special machines that can detect roughly 00 different genetic anomalies with just a simple blood sample. The testing machines are widely available in the United States. What is not available is the $40- $80 in the states’ budget, per child, for performing the test.

This lack of testing results in illness that could have been prevented, or even death of several thousand children each year. It should be noted that only a small percentage of babies will have one of these rare disorders. The financial cost of treating or caring for each child with one of these illnesses is hundreds of thousands of dollar per year.

The emotional cost to families is incalculable. Parents and grandparents see the $40-$80 fee as minuscule compared to the suffering and tragedy of children being permanently impaired physically and or mentally or deceased. Symptoms can appear without warning in otherwise healthy appearing infants and toddlers. The symptoms, vomiting, lethargy and seizures, are easily mistaken for a cold, flu, or upset stomach. Most of these "inborn errors of metabolism", as they are called in the medical profession, can be treated with diet, drugs or a combination.

The Basic Nine Tests, recommended by the March of Dimes

  • Phenylketonuria (PKU)- retardation
  • Congenital Hypothyroidism- slows growth and brain development
  • Maple Syrup Urine Disease- potentially lethal metabolic disorder
  • Homocystinuria- retarded brain development
  • MCADD- sudden seizures, coma, respiratory failure and death
  • Biotinidase Deficiency- hearing loss and coma
  • Sickle Cell Anemia- sometimes fatal blood disease
  • Congenital Adrenal Hyperplasia- disturbs kidney development and function
  • Glactosemia- can cause blindness and retardation

How to Get Your Baby Screened

Ask your OB-GYN or pediatrician if your hospital offers expanded newborn screening. If your hospital does not, here are some resources to contact.

The labs send out kits that are used to collect the sample and mailed back for analysis.

What You Can Do

Contact One, the Tyler for Life Foundation www.tylerforlife.com 770-947-3638

Provides a state by state listing of newborn tests, state health office address and various links to support groups and other materials.

Julie Loe

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Last modified: September 2, 2017