Skip to content
My WebMD Sign In, Sign Up

Children's Health

Font Size
A
A
A

decision pointHow can I make informed decisions about my extremely premature infant?

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 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.
  • A baby has the best chance of survival in a neonatal intensive care unit (NICU) that has modern equipment and a staff with a lot of experience.
  • 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.

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. A baby has the best chance of survival in a neonatal intensive care unit (NICU) that has modern equipment and a staff with a lot of experience.

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 750g or less at birth have one or more moderate or severe disabilities, including:1

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 ultrasound or MRI. Learning disabilities are often not detected until the early school years. And behavioral problems such as attention deficit hyperactivity disorder (ADHD) may not be noticed 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, 400g, or both.1
  • Some doctors recommend trying to resuscitate all 24- to 25-week newborns and basing treatment decisions on how well an infant responds.

Very few infants survive birth at 22 and 23 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.

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 examples of infant survival rates 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

Example 1 2

Example 2 3

23

26% survived (3 out of 4 died)

15% survived (8 out of 10 died)

24

56% survived (1 out of 2 died)

56% survived (1 out of 2 died)

25

75% survived (1 out of 4 died)

79% survived (1 out of 4 died)

Disability risk

By age: Although the survival rate for extreme preemies improves with each week, the disability rate is about the same among infants born extremely early.

In a Dutch study, almost 4 out of 10 children who were born at 25 to 26 weeks gestation had moderate or severe problems. They had problems with hearing, sight, impaired intelligence, having a job, and/or other problems at age 19.4

By weight: Of infants who survive birth with a newborn weight between 500g and 800g, nearly 1 out of 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.5 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.3

These personal stories may help you make your 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

         

Citations

  1. MacDonald H, Committee on Fetus and Newborn (2002). Perinatal care at the threshold of viability. Pediatrics, 110(5): 1024-1027.

  2. Tyson JE, et al. (2008). Intensive care for extreme prematurity-Moving beyond gestational age. New England Journal of Medicine, 358(16): 1672-1681.

  3. Stoll BJ, Adams-Chapman I (2007). Prematurity and intrauterine growth retardation section of The high-risk infant. In RM Kliegman et al., eds., Nelson Textbook of Pediatrics, 18th ed., pp. 701-710. Philadelphia: Saunders Elsevier.

  4. Hille ETM, et al. (2007). Functional outcomes and participation in young adulthood for very preterm and very low-birth-weight infants: The Dutch project on preterm and small for gestational age infants at 19 years of age. Pediatrics. Published online August 31, 2007 (doi:10.1542/peds.2006-2407).

  5. Bhutta AT, et al. (2002). Cognitive and behavioral outcomes of school-aged children who were born preterm. JAMA, 288(6): 728-737.

Author Debby Golonka, MPH
Editor Susan Van Houten, RN, BSN, MBA
Associate Editor Pat Truman, MATC
Primary Medical Reviewer Michael J. Sexton, MD - Pediatrics
Specialist Medical Reviewer Jennifer Merchant, MD - Neonatal-Perinatal Medicine
Last Updated May 5, 2009

WebMD Medical Reference from Healthwise

Last Updated: May 05, 2009
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

Today on WebMD

preschool age girl sitting at desk
Article
look at my hand
Slideshow
 
woman with cleaning products
Slideshow
young boy with fever
Article
 

worried kid
fitArticle
boy on father's shoulder
Article
 
Child with red rash on cheeks
Slideshow
girl thinking
Article
 

babyapp
New
Child with adhd
Slideshow
 
rl with friends
fitSlideshow
Syringes and graph illustration
Tool
 
6-Week Challenges
Want to know more?
Build a Fitter Family Challenge – Get your crew motivated to move.
Feed Your Family Better Challenge - Tips and tricks to healthy up your diet.
Sleep Better Challenge - Snooze clues for the whole family.
I have read and agreed to WebMD's Privacy Policy.
Enter cell phone number
- -
Entering your cell phone number and pressing submit indicates you agree to receive text messages from WebMD related to this challenge. WebMD is utilizing a 3rd party vendor, CellTrust, to provide the messages. You can opt out at any time.
Standard text rates apply

WebMD Special Sections