NEWBORN SCREENING NEWS WINTER 2013

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#Texas Pulse Oximetry ProjectTable of Contents

DSHS Begins Screening for Severe Combined Immunodeficiency - Ribbon Cutting

Congenital Hypothyroidism

83rd Legislative Session

Texas Healthy Babies

TXPulse Oximetry Project - An Educational Strategy to Implement Newborn Screening for Critical Congenital Heart Disease

NBS Nurses Work Holidays

Providing Needed NBS Benefits

Improving Hearing Screening for Little Texans

DSHS Begins Screening for Severe Combined Immunodeficiency (SCID) - November 30, 2012

Ribbon Cutting SCID

Grace Kubin - Laboratory Director (cut)
Susan Tanksley - Laboratory Operations Unit Manager
Jennifer Garcia - Parent
Debra Freedenberg - NBS Medical Director
Rachel Lee - Biochemistry and Genetics Branch Manager
David R. Martinez - NBS Unit Manager

Congenital Hypothyroidism  

Congenital Hypothyroidism is one of the more common disorders found in Newborn Screening in Texas. The thyroid gland, which is primarily responsible for metabolism, extracts iodine from the food we eat and uses it to produce thyroxin (T4). If the thyroid gland is absent, or is unable to produce enough thyroxin a person’s growth and development will be affected hypothyroidism). This is especially true for normal brain development and function in infants.  

Many parents are surprised to learn their baby has an abnormal newborn screen indicating possible hypothyroidism. The baby looks normal, so parents are not aware of potential problems. When the Department of State Health Services Laboratory analyzes the newborn screen, the abnormal results is sent to the Clinical Care Coordination (CCC) Team.  A CCC team member immediately notifies the physician of the abnormal results and suggests either:

  • A repeat screen (if results are from the initial screen) and/or
  • Confirmatory serum testing.

Testing includes obtaining measurements of T4, Free T4 and Thyroid Stimulating Hormone (TSH) levels. If tests indicate the baby may have hypothyroidism, the child is referred by their Primary Care physician to a Pediatric Endocrinologist for diagnosis. With timely testing and treatment many problems associated with a low or non-functioning thyroid gland can be avoided. Newborn Screening truly saves babies lives.

Paula Geurin, RN BSN, Manager - Endocrine, Biotinidase and Cystic Fibrosis Team

Texas 83rd Legislative Session

Texas Capital

DSHS Information for Legislative Session - January 8 through May 27, 2013

  • March 8, 2013 - Deadline for filing bills
  • May 27, 2013 - Last day of session

Texas Healthy Babies

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Someday Starts Now is a new campaign to reduce the number of infant deaths and preterm births in our state by promoting healthy lifestyles for people who may someday decide to have a baby. Someday Starts Now is part of the state's Healthy Texas Babies initiative, which focuses on reducing prematurity and decreasing the number of babies who die during their first year of life.

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Educational Opportunities - Grand Rounds, Community Health Worker Training, Continuing Education

Texas Pulse Oximetry Project (TxPOP) - An Educational Strategy to Implement Newborn Screening for Critical Congenital Hart Disease

Critical Congenital Heart Disease (CCHD) is the leading cause of death in infants less than one year old. In the United States, about 7,200 infants (2/1000 live births) are born annually with CCHD and at least 300 infants are discharged undiagnosed. Newborn screening using pulse oximetry can identify infants with this birth defect. Screening for early diagnosis and timely intervention of CCHD can significantly reduce morbidity and mortality among newborns.

In July 2012, an educational initiative was funded by the Texas DSHS NBS Unit. The purpose of the initiative is to evaluate system infrastructure, create an educational module and train healthcare professionals for CCHD screening. The project is a collaborative between The University of Texas Health Science Center at San Antonio (UTHSCSA), Baylor College of Medicine and Texas Children’s Hospital (TCH). 

The educational initiative identified 13 rural and metropolitan birthing facilities. A needs assessment tool was created to evaluate each site by reviewing existing resources, identifying key stakeholders and
determining their ability to implement an educational module. A robust, comprehensive educational program was standardized to prepare health care facilities to implement early CCHD screening utilizing pulse
oximetry. The newborn screening educational module for CCHD included curriculum development,
objectives to educate health care professionals and patient communication methods. A train-the-trainer
seminar was held in San Antonio, November 2-3, 2012 for professionals chosen to be champions of the project in their respective facility. An educational tool kit was produced that included a clinical algorithm for screening and intervention, information pamphlets for families, videos, slide presentations, and
posters. All 13 facilities were provided with the CCHD training and the participants received continuing education credits. The effectiveness of the training utilizing the educational tool kit was evaluated through pre- and post-tests. This standardized educational module will then be used in all birthing facilities throughout Texas.

Once the trainings are completed, UTHSCSA, BCM and TCH will begin monitoring the effectiveness of the program with the assistance of a data analyst from the Texas Health Institute. Data collected will be used to evaluate the impact of the educational sessions and materials on the CCHD screening process and to capture information on short-term health outcomes. The first positive screen was identified at
University Hospital in San Antonio and the infant received immediate successful surgery.

NBS Nurses on Duty During the Holidays

NBS Nurse Julia Y

Julianna Ybarbo, RN Endocrine Team

NBS Nurses3

Kim LaBoard, RN SCID and
Ginger Scott, RN Metabolics Team Lead 

With the passage of the 2012 holiday season, many are returning to work after a few days of vacation. At the Texas Department of State Health Services, Newborn Screening (NBS), nurses work holidays to ensure that no baby whose newborn screen suggests that they may have a life-threatening disorder goes untreated. A special thanks goes out to our dedicated nurses for their commitment to the health of Texas babies.

Providing Needed NBS Benefits

The NBS Benefits Program provides clinical evaluations, treatment, follow-up care, confirmatory testing, medications, vitamins and dietary supplements for babies diagnosed with a newborn screened birth disorder. The Program was developed in March 2007 to help meet the needs of individuals diagnosed with one of 29 disorders. In order to qualify, an individual must:

  • Be a Texas residents;
  • Have a presumed positive screen or a confirmed diagnosis of a disorder screened for in the Texas NBS Program;
  • Have an income at or below 350% of the federal poverty level (FPL); and
  • Not be eligible for other programs providing similar services. [Medicaid, Children with Special Health Care Needs, Children’s Health Insurance program (CHIP), CHIP Perinatal, Title V Genetic Services or private insurance].

The following types of medical providers can apply to contract with the NBS Benefits Program to provide services: 

  • Medical Genetic Clinics; 
  • Centers specializing in metabolic, endocrine and hematological disorders;
  • Medical Geneticists, pediatric pulmonologists and immunologists;
  • Laboratories that provide confirmatory testing; 
  • Pharmacies that provide vitamins, medications, dietary  supplements (metabolic foods); and
    Low-protein food manufacturers.

The Benefits program assisted 20 clients in 2008 and in 2012, 156 clients received services to diagnose, treat and provide follow-up care with any one of 29 disorders screened by the Texas NBS Program.

Improving Hearing Screening for Little Texans

In summer 2012, the Texas Early Hearing Detection Intervention (TEHDI) Program received a grant from the federal Health Resources and Service Administration (HRSA) which allows TEHDI to collaborate with the National Initiative for Children’s Healthcare Quality (NICHQ), a
not-for-profit, quality improvement organization dedicated to improving the quality of children’s healthcare. NICHQ believes that for children to achieve their optimal health, they need a healthy start, effective healthcare, and healthy living (conditions and habits). Other NICHQ initiatives are:
Collaborate for Healthy Weight, Be Our Voice, Best Fed Beginnings, and Working to Improve Sickle Cell Healthcare (WISH).

The primary focus of the TEHDI project, Improving Hearing Screening and Intervention Systems (IHSIS) is to improve screening, diagnosis, and intervention goals at 1, 3, and 6 months of life for infants with hearing loss. In order to accomplish this goal, TEHDI is working with the state-wide Early Hearing Detection and Intervention (EHDI) network to:

  • Develop quality improvements to increase the rate of documented follow-up and intervention services for infants with hearing loss;

  • Collect data at appropriate intervals; and

  • Measure, discuss, and analyze outcomes.

EHDI offices participating in the collaborative represent 28 states plus the District of Columbia, Puerto Rico, and the Virgin Islands. Several groups of EHDI offices have already completed the IHSIS collaborative. Texas is participating in the final group which includes 17 states. The project concludes August 2013.

Editor: Alex.Fisher@dshs.state.tx.us
512-776-6449

External links to other sites are intended to be informational and do not have the endorsement of the Texas Department of State Health Services. These sites may not be accessible to persons with visual impairment.

 

 

 

 

 

 

 

 

 

Last updated February 21, 2013