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Congenital Hypothyroidism

Congenital Hypothyroidism (CH) Family Fact Sheet

Date added to Michigan Newborn Screening: June 1977

What is a positive newborn screen?

Newborn screening is done on tiny samples of blood taken from your baby’s heel 24 to 36 hours after birth. The blood is tested for rare, hidden disorders that may affect your baby’s health and development. The newborn screen suggests your baby might have a disorder called congenital hypothyroidism.

A positive newborn screen does not mean your baby has CH, but it does mean your baby needs more testing to know for sure.

You will be notified by your primary care provider or the newborn screening program to arrange for additional testing.

What is CH?

CH affects the way the body makes special chemicals called hormones.

A person with CH doesn’t make enough thyroid hormone because the thyroid gland did not grow or does not work properly. Without enough thyroid hormone, the body can have problems making energy and growing.

The word “congenital” means the problem starts at birth and is different from thyroid disease in adults. CH is not usually passed on (inherited) from a child’s mother and father.

What problems can CH cause?

CH is different for each child. Some children with CH have few health problems, while others may have serious complications.

If CH is not treated, a child might develop:

  • Jaundice (yellow-colored skin).
  • Poor feeding.
  • Sleepiness.
  • Constipation.
  • Poor growth and weight gain.
  • Brain damage.

It is very important to follow the doctor’s instructions for testing and treatment.

What is the treatment for CH?

CH can be treated. Treatment is life-long and includes:

  • Daily medications to replace missing thyroid hormone.

Children with CH should see their regular doctor and a pediatric endocrinologist (hormone specialist).

Prompt and careful treatment helps children with CH live the healthiest lives possible.

Michigan Resources and Support

Michigan Newborn Screening Nurse Consultant
Toll-free: 1-866-673-9939
Email: NewbornScreening@Michigan.gov

Newborn Screening Endocrine Follow-up Program (EFUP) at Michigan Medicine
1-734-647-8938

Children’s Special Health Care Services
Toll-free: 1-800-359-3722

 

Download a printable version of the CH fact sheet.