What is congenital hypothyroidism? — Congenital hypothyroidism is a condition that causes the body to have too little thyroid hormone. Babies can be born with it. The term “congenital” means a condition a person is born with.
There is a gland in the neck called the thyroid gland. It makes thyroid hormone. This hormone controls how the body uses and stores energy (figure 1). “Hypothyroidism” is the term doctors and nurses use when a person does not make enough thyroid hormone. People sometimes confuse this condition with HYPERthyroidism, which is when a person makes too much thyroid hormone.
Congenital hypothyroidism is a serious condition because it can cause life-long learning problems if it is not treated.
What are the symptoms of congenital hypothyroidism? — Most babies with this condition have no symptoms. If they do, the symptoms can include:
●Being less active than other babies
●Problems with eating
●Constipation (not having enough bowel movements)
●Unusual appearance – Such as a large tongue, bulging around the belly button, or large soft spots on the head
●Muscles that are less firm or strong than those of other babies
●Being very cold
●Jaundice – A condition that makes the skin or the white part of the eye turn yellow. But most jaundice in newborn babies is not caused by hypothyroidism.
If your baby has any of the symptoms listed above, talk to the baby’s doctor or nurse.
Is there a test for congenital hypothyroidism? — Yes. Today, most newborn babies in the United States and many other countries have a blood test to check for congenital hypothyroidism. The test is done as part of the routine newborn screening tests.
If the results of this test are abnormal, doctors might do other tests. These include:
●Ultrasound – This test uses sound waves to create a picture of the inside of the body.
●Thyroid scan – For this test, the baby gets a pill or a shot with a small amount of a radioactive substance. Then a camera or scanner creates a picture of the thyroid gland.
How is congenital hypothyroidism treated? — Congenital hypothyroidism is treated by giving a thyroid hormone pill every day. Crush the pill into powder or very small pieces, mix it with breast milk, formula, or water, and feed it to the baby. If you are not sure how to do this, ask the doctor or nurse for help.
Important instructions to follow:
●Do NOT use soy formula or soy milk with the pill.
●Do NOT change the dose or give more medicine without asking the doctor. Giving too much thyroid hormone can cause heart problems and giving too little can cause learning problems.
●Give the pill every day.
Children with congenital hypothyroidism need regular checkups. They also need blood tests to check hormone levels. Ask the doctor or nurse how often to get checkups and tests, and go to the child’s appointments on time. The child needs to see a doctor or nurse regularly to make sure he or she is getting the right amount of thyroid hormone. Not giving the right amount of thyroid hormone can cause serious life-long problems.
Some children grow out of congenital hypothyroidism. The doctor will do a blood test to check for this.
Can congenital hypothyroid be prevented? — Not usually. But the learning problems it causes can be prevented by:
●Checking to make sure the baby is tested for congenital hypothyroidism right after birth. This is done as part of the newborn screening tests in the United States and many other countries.
●Giving thyroid hormone for as long as the doctor recommends. Many people with congenital hypothyroidism need to take thyroid hormone for life.
●Making sure the child with congenital hypothyroidism gets regular checkups and blood tests to see if he or she is getting the right amount of thyroid hormone.
If you have hypothyroidism (underactive thyroid) and want to get pregnant, talk to your doctor, nurse, or midwife. He or she can measure your thyroid hormone levels with a blood test. Having normal thyroid hormone levels can help you have a healthy baby.
What will my child’s life be like? — Most babies with congenital hypothyroidism live normal lives if the condition is found and treated soon after they are born.
Getting enough thyroid hormone is especially important in babies and young children. The thyroid hormone helps the brain develop. If a child’s brain does not get enough thyroid hormone, he or she can have learning problems. This causes life-long problems with thinking, learning, and doing daily activities.