Bill Would Expand Newborn Screening In New Jersey

Noting the importance of early testing to detect and treat potentially fatal disorders in infants, Assemblywoman Angelica Jimenez (D-Bergen/Hudson) is sponsoring legislation that would expand the types of disorders that newborns in the state are tested for.

“Parents should have the comfort that we are checking for any abnormalities that could hinder the healthy development of their children,” said Jimenez. “Many of these diseases can lead to lifelong impairments and even death, if not detected and treated early. This bill helps babies who are born with these rare disorders a chance to have healthy lives. What parent doesn’t want that for their child?”

Currently, newborns in New Jersey are tested for hypothyroidism, galactosemia and phenylketonuria. Under the bill, the list would be expanded to include:

· cystic fibrosis, congenital adrenal hyperplasia, maple syrup urine disease, biotinidase deficiency and medium chain acy1 coa dehydrogenase deficiency;

· sickle cell disease and other blood abnormalities as determined by the Commissioner of Health and Senior Services; and

· homocystinuria and HIVseropositivity.

“The death of a child is always tragic, but especially when it was preventable. Screening for these disorders can help save lives. Early detection and proper treatment can help these babies lead normal, healthy lives. That’s reason enough to expand our screening program,” said Jimenez.

The bill has been introduced in the Assembly Health and Senior Services Committee and awaits further consideration. TLS.

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  1. Although this bill will help save lives, our own experience with the medical profession and a child with Trisomy 13, is that when doctors get their confirmation of a condition that promises what they consider to be no “quality of life,” they insist on pulling the plug.

    When it comes to the educational profession, we can never say that a child cannot learn. The medical profession is allowed to not only say that a child cannot be treated, but also therefore, he should not live.

    They are amateurs in the field of ethics and morality and yet our nation puts so much faith in their judgement.

  2. If this means more amneos, then that itself carries risks. Amneocentsisis has a risk of c”v miscarrages.

    When my wife was pregnant with my son, she was 35 years old, right at the age where the risk of c”v a miscarriage from an amneo was less than the possibility of my son having CF or another illness. Being that regardless of what we were told, we weren’t having an abortion, we declined the amneo.

  3. I believe these screenings are for metabolic disorders in which a child’s health can be saved with proper treatment from birth. For example, a baby with PKU needs a special diet or will suffer permanent cognitive consequences. The child will be fine with the special diet. There are other disorders which are currently not screened for. There is no risk of miscarriage since this takes place after birth. There is no risk of pulling the plug since these disorders are usually silent until it’s too late. Yes, it costs money, but not more money than supporting a disabled child for life.

  4. If you reread the title of the article, you would realize it is for NEWBORN screening, that is AFTER the child is born. I actually just heard a lecture from someone in the NJ Board of Health who works in the newborn screening lab who was telling us about this bill. There is no law requiring anyone to have an amniocentesis, that is up to you to have one if you would like to. Newborn screenings have been done in hospitals for years and most people never even realized. They only check for disorders that can be corrected, such as PKU for example, which can be fatal if you don’t realize the special needed.

  5. The test for cystic fybrosis has many false positives. They do it in New York and I’ve heard a quite a few stories of babies who had to go through ridiculous further testing.

  6. Isn’t it better to go thru further testing to find out your child is healthy than to be ignorant of a treatable issue c”v? Use modern medicine to your advantage! Noone is “pulling the plug” on a baby with PKU or sickle cell anemia!

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