1. Newborn Screening:
Because you touch the future everyday

2. Purpose of Newborn Screening
Screens for congenital and heritable disorders
These disorders may cause severe mental retardation, illness, or death if not treated early in life
If treated, infants may live relatively normal lives
Results in savings in medical costs over time

3. If Untreated, Disorders
Can result in:
Growth problems
Developmental delays
Behavioral/emotional problems
Deafness or blindness
Retardation
Seizures
Coma, sometimes leading to death

4. Texas Newborn Screening Facts
Texas has been screening newborns since late 1963, pilot & beta testing done. It was required by law in 1965.
PKU was first test available by using dried blood spot. Texas now tests for 27 disorders.
All disorders are autosomal recessive disorders except Congenital Hypothyroid.
CH has higher incidence in Hispanic females. Nationwide rate 1: 3,500; Texas rate 1:1,800

5. Texas Facts Continued
Texas is 1 of 8 states currently requiring 2 NBS tests. Many states recommend 2nd NBS. NBS Program identifies about 10% of diagnosed cases on 2nd NBS.
DSHS Lab processes specimens per day.

6. Changes in NBS Program
Lab and Case Management have gone to 6 day work week. Only “Panic Codes” will be called out on Saturdays
DSHS Regional staff increased to assist in locating hard to find infants and referring to additional programs
Lab using mailbox to speed up delivery of specimens

7. Abnormal/Normal Results
Normal results: Mailer will be sent out by regular postal service. Typically received in submitting facility in 10 working days
Abnormal results: Health care provider notified as soon as result is available and provider is located.
Web Based system: NBS results available online when NBS completed-approx. 5 working days after receipt of specimen.

10. Abnormal Specimen Case Management will send:
Lab results for that disorder
ACT sheet specific to that disorder
FACT sheet for families
List of Specialists

11. Abnormal Results for each disorder
Panic Codes
are reported to RN in NBS Case Management
RN will notify MD ASAP. If MD unavailable RN will notify mother
Abnormal Codes
Health Tech will notify MD or facility
Mother notified by letter

14. Estimated Expansion Statistics
Approximately 412,000 births a year
Approximately 800,000 specimens a year collected
Follow-up on approximately 15,000 abnormal screens a year
Approximately 620 diagnosed cases per year
Program will also identify about 300 secondary target disorders.

15. Sickle Cell Trait
Newborn Screening Program began notifying parents of Sickle Cell Trait in December 2007.
Program will identify approximately 10,000 infants with Sickle Cell Trait per year.
Significance of Trait may need to be explained to parent.

16. Things Parents Should Know after Abnormal Screen
This is a screen. There are presumptive positives & false negatives
The newborn screen is designed to detect babies at risk before they have signs and symptoms
Early detection and treatment results in prevention of irreversible complications
There is often no family history. Siblings may not have history of any screened disorders

17. Criteria for screened disorders
Disorder occurs with significant frequency
Test are inexpensive and reliable
Effective treatment/intervention exists
If untreated, baby may die or develop severe retardation
Affected baby may appear normal at birth
American College of Medical Genetics guidelines

18. Texas babies are mandated to have 2 newborn screens
The first screen at hours or before leaving hospital, whichever is first
The second screen at 1-2 weeks of age
Premature and low weight babies are required to have screens in same time frame
Take first screen before transfusion

19. This tear off sheet goes to parent:
To remind them to get #2 screen
To give to pediatrician

20. Doctor will be able to call into Lab’s Voice Response System or online data system to access results of 1st screen.
Dr Will be able to cal

21. Forms ask for (in military time):
Time of birth
Time of collection

22. Circle #3 if any previous screen was abnormal.
Enter DSHS Lab # if possible.

23. No additional blood spots required.

25. MEDICAID vs PAID Use Medicaid Collection Card if:
Mother is on Medicaid
Medicaid is pending
Charity
You do not know if mother is on Medicaid

26. “UNSAT”: THE TOP 5

27. #5 Do not use Expired Forms Check Form Serial # Rotate stock
Order new forms before old forms expire
Destroy expired MEDICAID forms
Send expired PAID forms back to DSHS lab for credit
WILL NOT BE ABLE TO ACCEPT WRONG YEAR ON CARD

28. #4 Avoid Contaminants Waste first drop of blood
Do not touch filter paper
Dry flat 3-4 hours
Do not put in plastic bag

29. Common Contaminants EDTA Alcohol Do not use purple capped tubes
Be careful of hand lotion
Fingerprints will leave amino acids
Alcohol
Wipe dry after cleaning

30. #3 Mail specimen within 24 hours Do Not Batch
Eliminate unnecessary Stops
If someone is on vacation- assign to someone else

31. #2 Date of Collection Other Demographic information is Important
Specimen cannot be processed without date of collection
Do not punch or cover up barcodes
Date of Birth/time of birth
Other Demographic information is Important
Mother’s name, address
good phone # for to call if abnormal
Get MD’s name if possible

32. #1 Get a good Blood Spot! Use proper lancet: approx 2.0mm
Must soak through to other side of filter paper
Get a good blood spot before moving onto the next spot
Do not scratch or abrade paper
Call the Lab for questions or problems

34. Newborn Hearing Screening
Hearing screening program
Performed at birth facilities
Follow up by audiologists
Referred to Early Childhood Intervention if hearing loss is found
About 3 babies per 1000 are born with hearing loss

35. Resources Available for Parents
Newborn Screening Pamphlets may be ordered online. Available in English, Spanish & Vietnamese and are provided free of charge. Please call or NBS Program if other language is needed.
March of Dimes Video available in English and Spanish.
NBS Website.

36. Resources for Providers
NBS Pamphlets
Collection and Newborn Screening Program Video
Collection posters
NBS Newsletter
NBS website
Power Point presentations on Collection
Online Provider Education
On-site In-Services

38. THE END