All newborns in Texas are screened for 53 different disorders at birth. Starting this week, a new screening will be added to that roster — for X-ALD. The addition of this disease in the roster of newborn screenings is a big step forward in identifying the disease early before symptoms occur.
We stay on top of activity surrounding any condition that may have challenging neurological side effects, such as X-ALD. The earlier that a serious disorder can be identified, the sooner we can make a treatment plan that will hopefully lead to a better outcome and quality of life for the child and their family.
What are newborn screenings?
Nearly all babies will have a simple blood test, usually a heel prick, to check for disorders that are not apparent immediately after delivery. Some of these disorders are genetic, metabolic, blood, or hormone-related. While each state offers screenings, the kinds of screenings vary from state to state. Click here to see a full list of newborn screenings in the US.
Why do we need newborn screenings?
Most of the diseases tested may go undetected for months or years and can cause medical problems as your baby develops. With early treatment or intervention, intellectual and physical disabilities may be prevented or delayed and that can make a huge difference in your child’s health and well-being.
What is X-ALD?
X-ALD, or adrenoleukodystrophy, is a very rare but serious genetic disorder affecting the nervous system and adrenal glands. It occurs primarily in boys and can cause growth problems, developmental delays, deafness, blindness, intellectual disability, seizures, or even premature death. Early detection via a blood test can help prevent or delay the onset of the disorder’s side effects—so immediate intervention is key. State health experts estimate that about 150 newborns will be diagnosed with X-ALD each year. Additional information about X-ALD can be found here.
What happens if my baby is identified for X-ALD?
Upon identification, your newborn will be referred automatically to specialists in genetics, endocrinology, and neurology.
If you have questions about the potential neurological effects of a genetic disorder like X-ALD, or concerns about developmental delays or other neurological issues in your child or teenager, contact us for an appointment with one of our pediatric specialists.