What to Expect When You Have an Extremely Premature Infant

Topic Overview

Infants born before 28 weeks of pregnancy are called "extremely premature." If your infant is born this early, you likely will face some hard decisions.

Your premature infant has a much greater chance than ever before of doing well. A baby has the best chance of survival in a neonatal intensive care unit (NICU) that has a staff with a lot of experience.

When a baby is born too early, his or her major organs are not fully formed. This can cause health problems. Your infant may not respond well to attempts to keep him or her alive. Often it's not clear whether treatment will help an infant live-with or without disability-or will only make the dying process take longer. A specialist called a neonatologist can give you some idea of what may happen. But no one can predict what exactly will happen. In the end it will be up to you to decide how far to continue treatment.

Having a premature baby may be stressful and scary. To get through it, you and your partner must take good care of yourselves and each other. It may help to talk to a spiritual adviser, a counselor, or a social worker. You may be able to find a support group of other parents who are going through the same thing.

What can you expect after an extremely premature birth?

If the baby can't breathe, the first decision that may be faced by parents and doctors is whether to resuscitate the infant. This means bringing the baby alive by getting the heart and lungs to work. When resuscitation doesn't work or isn't done, babies get care that makes them comfortable instead of treatment to keep them alive.

Treatment decisions are usually based on whether the infant's brain has been damaged. This can happen from bleeding in the brain or a lack of oxygen. Other things that affect treatment decisions include how physically healthy the baby looks and how many weeks old the baby appears to be.

The first month after the birth is when most major problems occur. It is a critical decision-making period for parents. There may be laws in your area that affect your decisions. Talk to your doctor about this.

How many of these babies survive being born?

The more premature the baby is, the lower the chances of survival are. Very few infants survive when they are born at 22 to 23 weeks of pregnancy. The table below shows estimates based on two sources.

It's important to remember that research results are only general numbers. Everyone's case is different, and these numbers may not show what will happen in your baby's case.

How many of these babies have problems later on?

In the first year of life, babies that have a very low birth weight are more likely to be in the hospital more often than babies who were born at a healthier weight.^{footnote 2}

Many problems can't be found until after an infant's more urgent problems are under control. For example:

• The signs of cerebral palsy may not be noticed until a child is 1 to 3 years old.
• Learning disabilities are often not found until the early school years.
• Behavioral problems such as attention deficit hyperactivity disorder (ADHD) may not be noticed until the child is older.

Below are examples from studies of children who survived being born extremely early. Researchers looked at how likely these children were to have problems later on, based on how early they were born and/or what they weighed at birth.

For a tool that can help estimate the outcome for babies born at 22 to 25 weeks of age, go to www.nichd.nih.gov/about/org/cdbpm/pp/prog_epbo/epbo_case.cfm.