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Heartaches we can prevent.

In 1984, the Saturday Evening post Society spearheaded a vigorous crusade to require mandatory testing of newborns for galactosemia (Jan./Feb. 1984). With screening and early treatment, the severe mental retardation and possible death from galactosemia can be avoided.

Prevention is the key. A single drop of blood and a simple test can detect the hereditary disorder, which occurs once every 30-40,000 births. Time is of the essence-a positive test result is a medical emergency.

The same small blood sample from a heel prick to test for phenylketonuria (PKU) and hypothyroidism (two of the most common causes of mental retardation) also can be used to test for galactosemia. The test, when combined with tests for the other genetic disorders, is inexpensive, just 21 cents per baby in New York state, for example.

Defects in galactose metabolism are characterized by elevated blood galactose resulting from a block in the conversion of galactose to glucose. Many affected infants die as newborns. Many more may die between two and three years of age of liver cirrhosis. Survivors are usually retarded.

The best solution is to detect galactosemic babies immediately after birth. Days count ! Once identified, immediately eliminating milk and other dairy products from the infant's diet can prevent disastrous mental impairment. Parents also can thus be warned that their future children could suffer from the disorder. In the past, as many as one-third to one-half of families who eventually had a galactosemic child diagnosed already had suffered the loss of one infant from the disease.

The Society continues its commitment to saving innocent children and rescuing their families from the heartbreak of a mentally retarded child.

Seven years ago, 25 states did not require screening for this debilitating and potentially deadly disease.

With the help of a friendly lawyer and a sympathetic state senator we had a bill drawn up for Indiana in no time at all. We sent members of the legislature copies of our article, "A Mentally Retarded Baby Is Forever." On the day of the voting, Dr. Richard Shriner, the neonatologist who appeared in our article, went to the Statehouse to testify in behalf of the mandatory test. The bill passed the House and Senate unanimously! It was so easy, we decided to send copies of our Indiana bill and our magazine article to all the states that didn't yet require this test. That was 1984 and today, all but I I states mandate the test for this dreaded hereditary disorder.

We need your help in urging legislators in Alabama, Arkansas, Hawaii, Louisiana, North Dakota, Pennsylvania, South Carolina, South Dakota, Tennessee, and Washington to enact this law. The state of Mississippi will mandate testing in the near future. According to Daniel Bender of Mississippi's state department of health, all infants should be tested beginning in July. Last year six cases of galactosemia were referred to the University of Mississippi Medical Center at Jackson.

If you live in any of the states not testing and want to help, we'll send you a copy of our Indiana law that you can give to your legislator, who will introduce it to your state legislature. Please show your legislator a copy of our 1984 Saturday Evening Post article and the galactosemia article on page 26 of the magazine you are reading. Then if you send us a list of all your state senators and representatives, the Post Society will mail each of them copies of our articles and the Indiana bill.

As an update on the happenings in Indiana, the young neonatologist in our 1984 article has now been made the Chief of Pediatrics for Riley Hospital for Children at the Indiana University Medical Center. Since his help in getting the bill passed, there have been six Indiana newborns discovered with this disease, the most lethal of milk intolerances.

In 1989, 47 infants in Indiana were found to carry the galactosemia trait, although none of these developed the disease.

In Indiana the heel prick test is done 48 hours after birth, or at the time of the mother's discharge if she doesn't remain in the hospital for 48 hours. The blood stain on the "blotter paper" is sent to one of three regional labs where the test is completed within 72 hours, and results are sent to the physician of record. The physician is legally responsible for notifying the parents to the result.

Since the galactosemia test results are sent to the physician, he or she decides how to handle a case involving adoption or other cases requiring anonymity. If physicians cannot find the parents, they may consult the State Board of Health and local health and welfare departments for help in tracking them down and making a house call.

Help is needed to continue the campaign to save innocent lives from a lifetime of disappointment.

For a copy of sample legislation that could be introduced to your state legislature and a copy of the article on galactosemia, write to: The Saturday Evening Post, P.O. Box 567, Indianapolis, IN 46202.
COPYRIGHT 1991 Saturday Evening Post Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991 Gale, Cengage Learning. All rights reserved.

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Title Annotation:push for mandatory testing of newborns for glactosemia
Author:SerVass, Cory
Publication:Saturday Evening Post
Date:Jan 1, 1991
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