Two Local Hospitals Join Pilot Program to Test Newborns for SCID

By: Meredith Stancik Email
By: Meredith Stancik Email

College Station mom Jennifer Garcia lost her son Cameron at nine months from Severe Combined Immunodeficiency or SCID also known as the Bubble Boy Disease. Cameron didn't develop a normal immune system.

Since Cameron's death, Jennifer has been fighting to have all Texas babies screened for the disease.

The test is currently not a part of the Texas Newborn Screen Panel, so Cameron wasn't tested at birth.

"I want him (Cameron) to be proud of me and I want him to know that I just didn't walk out of the hospital and say this is what happened to me and I'll just deal with it," Garcia said. "I've said I don't want this to happen to another parent."

Jennifer is off to a great start.

St. Joseph Regional Health Center in Bryan is now part of a SCID pilot program. It's a state-funded program Jennifer has worked on. She even trained the hospital's staff.

Parents can opt in to have their baby tested for free as part of the Texas Newborn Screening Panel. All it takes is a simple blood test.

"You have the opportunity to make a change not just in the life of your child, but to really affect our entire community, our entire state," Tamara Congdon with St. Joseph Regional Health Center said.

The pilot program is designed to educate parents about SCID and to identify the rate in which it occurs. Right now it's believed 1 in 40,000 to 1 in 100,000 newborns will have SCID. However, the rate could be higher.

So far 100-percent of babies born at St. Joseph since the pilot program began, have been tested. That includes Christy Cisneros' son born this week.

"Whatever is best for the baby," Cisneros said. "Testing for auto immune disease and things like that are great and the new enhancements of medicine, whatever is best for the baby."

Cameron Garcia could have survived. SCID is treatable if detected at birth. A bone marrow transplant could have saved his life.

Jennifer is working with local lawmakers, hoping one will carry legislation for SCID testing into the next legislative session.
So that every Texas newborn is tested at birth.

The College Station Medical Center is also one of the hospitals participating in the SCID pilot program.

Since the program began late last year, 2000 Texas newborns have been tested.

Click here for more information about Newborn screening

About the Pilot Study for SCID Newborn Screening (Texas Department of State Health Services)

Severe Combined Immunodeficiency Disorder (SCID) is a group of genetic disorders characterized by profound defects in the immune system. On May 21, 2010, the Secretary of the U.S. Department of Health and Human Services approved the addition of SCID to the list of screening tests that all children are recommended to get at birth. In preparation for the possible future addition of SCID to the Texas Newborn Screening (NBS) Panel, the state laboratory is currently conducting a pilot study for SCID newborn screening.

In collaboration with the New England Newborn Screening Program (NENSP), and with grant support from the federal Centers for Disease Control and Prevention (CDC), the Texas NBS Program SCID pilot study goals are to evaluate how SCID testing could be incorporated into the Texas NBS Program. The test will be performed using specimens collected for routine newborn screening in Texas, with the parents having provided advance written consent for participation in the study. While this is a limited pilot study and is not designed to be state-wide, if a parent outside of the study area wishes their child to participate in the study, DSHS will attempt to accommodate that participation (taking into account the numbers of interested parents, timing in relation to the study, etc.). Such parents would need to contact the DSHS Newborn Screening Laboratory and completely fill out and submit the consent form to DSHS. Please note that if you have already requested that DSHS destroy your child?s blood spot specimen and the blood spot has been destroyed, you would not be eligible to request participation in this pilot study.

In this pilot study, if a positive result is indicated during the testing, the infant's primary care provider and a pediatric immunologist will be notified with a recommendation for a referral to a local immunologist to obtain a diagnostic test and evaluation. Because this is a study to determine how SCID testing would be made a part of the routine Texas NBS process, it is important to note that a positive result indicated during the study will not definitely mean that your child has SCID. Instead, it means that our preliminary study (where methodologies for testing, etc. are being worked out) indicates that SCID may be present. The further confirmatory testing that you would have conducted, after your physician receives the notice from us, will provide you with the final answer as to whether your child has SCID.

This pilot study provides important information that will complement the data from studies conducted by the states of Massachusetts and Wisconsin (as coordinated by CDC). The overall national study results will help determine the optimal SCID testing methodology for use when funding is available to add it to the Texas newborn screening panel. Ongoing research is critical to the future development of newborn screening services.

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