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.¹
Some doctors recommend trying to resuscitate all 23- to 25-week newborns and basing treatment decisions on how well an infant responds.²
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.
For more information, see the topic Premature Infant.
Your Information

During your infant's first hours or weeks on the NICU, you may be faced with one or more life-or-death medical decisions about your infant's care. The decision whether to consent to further medical treatment takes into account your personal feelings, the NICU team's experience with infants similar to yours, and the medical facts.
Below are statistics reflecting infant survival and disability 18 to 30 months after extremely premature birth. Bear in mind that statistics tell us about large groups—they cannot closely predict your infant's outcome and are best used as a general reference. Studies vary in what they report and are based on treatment practices that vary from hospital to hospital, particularly births between 22 and 23 weeks.
Survival rates by gestational birth age

Weeks of gestation at birth

Study 1 ¹

Study 2 ³

23 30% survived (2 out of 3 died) 11% survived (9 out of 10 died)
24 52% survived (1 out of 2 died) 26% survived (3 out of 4 died)
25 76% survived (1 out of 4 died) 54% survived (1 out of 2 died)
Disability risk
By age: Although the survival rate for extreme preemies improves with each week, the disability rate does not greatly improve. In an Irish and British study of toddlers who survived extremely premature birth in the mid-1990s, about 50% of those born at 23, 24, and 25 weeks developed at least one moderate to severe disability.³
By weight: Of infants who survive birth with a newborn weight between 500 g (1.1 lb) and 800 g (1.8 lb), nearly 1 in 3 develops a moderate to severe disability. In other words, about 2 in 3 do not develop mental retardation, cerebral palsy, blindness, or deafness.¹ These children do, however, have higher rates of learning disability, attention problems, and behavior problems than children born at full term.⁴
These personal stories may help you make your decision.
Wise Health Decision

Use this worksheet to help you make your decision. After completing it, you should have a better idea of how you feel about using further medical intervention for your extremely premature infant. Discuss the worksheet with your doctor.
Circle the answer that best applies to you.

I feel that I have enough information about my infant's condition to make an informed decision.
Yes No Unsure

I understand that this is ultimately my decision, because I am responsible for this child throughout my lifetime.
Yes No Unsure

My infant was born with additional risk factors (such as infection, exposure to toxins in utero, small size for age) that make healthy survival less likely.
Yes No Unsure

My infant has developed a life-threatening complication.
Yes No Unsure

My infant's risk of having at least one severe lifetime disability is high.
Yes No Unsure

I believe that my infant will have a poor quality of life in the future.
Yes No Unsure

I feel best doing whatever possible to preserve my infant's life.
Yes No Unsure

I am prepared or able to raise a severely disabled child who will never be able to live independently.
Yes No Unsure

My spiritual beliefs are a help to me right now.
Yes No Unsure

I understand that the doctor’s greatest concern is my infant. I know that my baby's doctor is not required to provide inappropriate treatment or to withhold helpful treatment at my request.
Yes No Unsure
Use the following space to list any other important concerns you have about this decision.

What is your overall impression?
Your answers in the above worksheet are meant to give you a general idea of where you stand on this decision. You may have one overriding reason to use or not use further medical intervention for your extremely premature infant.
Check the box below that represents your overall impression about your decision.

Leaning toward further medical intervention

Leaning toward NOT using further medical intervention

Return to the topic Premature Infant.


Author:	Debby Golonka, MPH	Last Updated May 8, 2007
Medical Review:	Michael J. Sexton, MD - Pediatrics Jennifer Merchant, MD - Neonatal-Perinatal Medicine
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