Tuesday, March 22, 2011

Calling all Texans

Charlie was saved from severe mental damage because he had a heel prick right after he was born.

These few drops of blood tested him for PKU along with several other diseases and disorders. Because it was caught early we can treat it with a special diet and he can lead a normal healthy life. If it wasn't for that test and the early intervention it led to, he would have gradually become brain damaged and never progressed beyond the mental capacity of a two-year old. By the time he would have been showing signs of PKU irreversible damage would have already occurred. I didn't know about PKU before that test was taken. If it had been optional and was not explained to me I might have skipped it. Charlie would have paid a high price for my ignorance.

I don't think I can express on this blog how grateful I am for that mandatory newborn screen test.

If you live in Texas, know someone in Texas, or just care about children, read the following and do something. Thank you!

This is what is going on:

Newborn screening is under attack in Texas! Two bills are in pending in the Texas legislature (HB 2110 and HB 411, and its companion bill SB 507) that will radically change the way newborn screening is conducted. We need to stop these bills to help save babies' lives!

HB 2110 will make Texas the only state in the country to require parents to opt-in for screening services. There is no provision requiring education for prospective parents about newborn screening. This new opt-in policy and the lack of prenatal education about newborn screening will result in children missing the screening tests and suffering unnecessarily, becoming disabled, or dying.

HB 411 (and its companion bill in the Senate, SB 507) contains provisions that will make it very difficult for the state to add in diseases to the newborn screening program. Research is now occurring for muscular dystrophy, lysosomal storage disorders, certain ataxias, SCID and many more diseases. These babies deserve saving too! This bill needs amending to add provisions for prenatal education about newborn screening and state storage and use of leftover samples to save more babies' lives.

Newborn screening is an amazing program that saves countless tiny lives every year. Don't let Texas' babies suffer!
Here are three ways you can help:
1. Sign this petition and tell the Texas legislators to put babies first! Save Newborn Screening in Texas and Help Save Babies Lives!
2. Call the Tx House Public Health Committee members and tell them that you oppose HB 411 and HB 2110. If you get a chance, let us know how your calls went. TX House Public Health Committee Members - phone numbers.
3. Join other Newborn Screening Advocates at the capital in Austin on Tuesday, March 22 at 2pm and throughout the day on Wednesday, Mar 23. There is a House Public Health Committee meeting Wed at 8am. Please come if you can. Your voice is needed!

1 comment:

Karen said...

Thanks for posting this Katie! I had no idea. I signed the petition and asked my TX friends to read your blog post. Love you bunches!