How can I make informed decisions about my extremely premature infant?

Introduction

This information will help you understand your choices, whether you share in the decision-making process or rely on your doctor's advice.

Key points in making your decisions

If your infant is born between 22 and 25 completed weeks of pregnancy (extreme prematurity), you likely will be faced with some difficult medical decisions during the first month after the birth. Although a neonatologist can give you some idea of what may happen after such an early delivery, your newborn's condition will be individual and unpredictable. If your infant doesn't respond well to resuscitation or develops serious complications that are likely to cause death or disability, it ultimately will be up to you to decide how far to continue supportive treatment.

There are no definitively right or wrong answers when deciding whether and how to support the life of a sick, extremely premature infant. But the decisions you have to make may be influenced by laws. Talk to your doctor about these kinds of issues.

Your infant's condition, how other extreme preemies have responded to treatment, and your personal values and hopes for the future play a part in your decisions. Consider the following when making decisions about medical care for your baby:

Treatment decisions are guided by what is in the best interest of your infant.
After an extremely premature birth, it is often unclear whether aggressive treatment will prolong a dying process or help an infant survive with or without disability.
A fragile preemie may be more resilient than expected and is also likely to have sudden setbacks. At birth and from day to day, no one can accurately predict what will happen in the coming weeks.
The first month after the birth is when most major complications develop and therefore is the critical decision-making period for parents of an extremely premature infant.
Decision making of this kind is more of a process than a defined event. You may find that your position on the use of life support or additional treatment changes as your infant's condition changes.

Thanks to medical technology, your premature infant has a much greater chance of doing well than ever before.

Medical Information

What is extreme prematurity?

Infants born between 22 and 26 completed weeks of pregnancy are called "extremely premature." An infant's chances of survival greatly increase with each additional week of pregnancy.

What are the risks of surviving extreme prematurity?

As many as half of all toddlers who have survived birth before 25 completed weeks' gestation or weighed 750 g (1.7 lb) or less at birth have one or more moderate or severe disabilities, including:¹

Mental retardation.
Cerebral palsy.
Blindness.
Deafness.

Sadly, neurologic problems cannot be diagnosed until well after an infant has stabilized. The risk for cerebral palsy can be estimated no sooner than 28 days after birth, when certain patterns of brain damage can be checked by MRI. Learning disabilities are often not detected until the early school years. And behavioral problems such as attention deficit hyperactivity disorder (ADHD) may not become apparent until the early childhood years.

Parents and doctors typically make medical decisions for extreme preemies based on whether the brain has suffered damage from brain bleeding (intraventricular hemorrhage) or a lack of enough oxygen (oxygen deprivation). This type of damage may be found using cranial ultrasound.

For more risk information, see the Your Information section.

What can I expect after an extremely premature birth?

Try to suspend all expectations of what will happen after an extremely premature birth. Although you may have a solid sense of what medical care you will agree to after the birth, be prepared for that to change as you learn more about your newborn. Advance estimates of fetal weight and gestational age can be inaccurate enough that seeing a newborn is usually necessary before making medical decisions.

Whether to resuscitate at birth is often the first medical decision faced by parents and doctors.

According to the American Academy of Pediatrics, experts in neonatal resuscitation support the decision to not resuscitate infants born at less than 23 weeks' gestation, 400 g (0.9 lb), or both.
Some doctors recommend trying to resuscitate all 23- to 25-week newborns and basing treatment decisions on how well an infant responds.

Very few infants survive birth at 22 weeks' gestation, and most are offered "comfort care" instead of intensive care.

Newborns who survive an extremely premature birth follow an unpredictable path. Experts have found that they cannot accurately predict an extreme preemie's chances of healthy survival using a formula of various factors such as sex, gestational age, and weight relative to age. But your infant's neonatal intensive care unit (NICU) team can keep you fully informed about how well your infant is doing relative to his or her age, whether any medical complications might cause long-term suffering or disability, and what possible outcomes lie ahead.