Category: Family Health

Created 03/2020

 

There are many questions parents of children with limb loss or limb difference(s) may have. And, while additional research is needed to assist in answering some of those questions, this fact sheet will outline information and supports that are available to families today. In order to best assist in identifying key information and resources, we have created this fact sheet as an introduction for parents of children with limb loss and limb difference. The Amputee Coalition also suggests that you explore the links to additional resources available at the bottom of this sheet or on the Amputee Coalition’s website.

Families typically become part of this community in two different ways. Annual surveys of specialized pediatric amputee clinics in the United States repeatedly show that approximately 60% of children with limb loss and limb difference are congenital and 40% are acquired.¹

 

Definitions

• Acquired Amputee/Amputation: the surgical removal of a limb(s) due to complications associated with disease or trauma.
• Congenital Amputee/Amputation: a condition where a person is born without a limb or a portion of a limb.
• Orthotics: the branch of medicine that deals with the provision of use of artificial devices such as splints and braces.
• Prosthetics: the field of research and expertise in designing and building artificial limbs. Prosthetic can be used as an adjective as well (example: prosthetic limbs).
• Prosthesis: the most accurate term for an artificial device that is built to replace a missing body part. The plural of prosthesis is prostheses. Prostheses are worn by those who lost limbs dur to disease or trauma, and those who were born with congenital limb difference. A person who is an expert in prostheses and their use is called a prosthetist.

 

The U.S. Centers for Disease Control and Prevention estimates that, every year, approximately 1 in every 1,900 babies born in the U.S. are born with a congenital limb difference. Some of these infants will have both upper limb difference(s) and lower limb difference(s). Children living with limb difference may encounter difficulties and limitations as a result. The child’s healthcare team will be able to provide them with the proper treatment and care that will allow the child the ability to live a long, healthy, and productive life. These treatments may include but are not limited to prosthetic devices, orthotics, surgery, and rehabilitation (physical or occupational therapy). These treatments can vary for each child and are designed to ensure proper functionality and, at times, assist with appearance.

 

Thousands of children will lose a limb due to trauma or as a result of an infection or cancer every year. In cases of traumatic amputation, there often is no time to prepare the child or family in advance. Most children will experience a sense of loss regarding their limb loss/limb difference, and everyone involved will need to exercise love and patience during recovery. The considerations for amputation are different for children than adults due to the rapid and continual growth of children’s bodies. There are more risks of bone overgrowth and the possibility of more surgical intervention as the child grows. The child’s healthcare team will coordinate with the child’s family on how to achieve the best outcome for the child.

 

“How the parents accept a limb deficiency and how well they cope with it has a great deal to do with how well the child does, either with or without a prosthesis.”
Yoshio Setoguchi, MD

There are unique challenges in deciding whether or not to have a child fitted for a prosthesis. For infants, fitting a leg prosthesis usually happens between 8 to 14 months to help with beginning to walk. For an upper limb, children may be fitted as early as 4 to 6 months to aid in exploring the environment.

As children grow rapidly, prosthetic devices will need to be frequently readjusted and/or replaced. Children need time to fully learn how to use a prosthesis and adapt to the world with it before it is replaced. Prostheses will sometimes also be made slightly larger for a child to grow into the device.

Ultimately, the decision whether or not to fit a child for a prosthesis will be made by the parents/caregivers of the child with the expert advice and recommendations of the healthcare team.

 

The contents of the following Web sites are solely the responsibility of their authors and do not necessarily represent the official views of the Amputee Coalition. The Amputee Coalition cannot and does not make specific recommendations for products or services. No Amputee Coalition endorsement is implied.

ActiveForever.com
http://activeforever.com/

Adaptive Mall
800/371-2778
https://www.adaptivemall.com/

Adaptive Specialties Pediatric Adaptive Equipment
877/808-4540
https://www.adaptivespecialties.com/pediatric-adaptive-equipment.aspx

Assitivetech.net
National Public Website on Assistive Technology
404/894-4960
http://assistivetech.net/

Discount Medical Supplies
http://www.discountmedicalsupplies.com/

Enabling Devices – Assistive Technology – Products for the Disabled
https://enablingdevices.com/

Live Oak Home Medical Products
http://buyliveoak.com

Maddak Aids for Daily Living
http://www.maddak.com/

MedicalProductsDirect.com
http://medicalproductsdirect.com/

North Coast Medical & Rehabilitation Products
https://www.ncmedical.com

Performance Health
https://www.performancehealth.com/

RehabMart
800/827-8283
https://www.rehabmart.com/all-categories.asp

Simple Comforts
http://www.simplecomforts.com/

Texas Assistive Devices (upper limb devices)
http://www.n-abler.org

Theraproducts
http://www.theraproducts.com/

 Wrightstuff.biz  (Adaptive Daily Living Products)
http://www.wrightstuff.biz

 

Limb Loss Definitions
https://amputee-coalition.org/resources/limb-loss-definitions/

Prostheses for Children with Limb Differences
https://amputee-coalition.org/resources/prostheses-for-children/

Resources to Help Children Understand Limb Loss
https://amputee-coalition.org/resources/understand-limb-loss/

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¹ Robert E. Tooms, MD http://www.oandplibrary.org/alp/chap32-01.asp

Introduction

Depending on the reason for your amputation and the state of your limb at the time of surgery, definitive closure of the wound may take place immediately or be delayed until a later date. Wound care involves multiple phases. Here, we will review two phases of the recovery process, talk about the goal of each phase, and discuss your role in managing your surgical wound and the skin of your residual limb.

 

Phase 1: Pre-Closure of the Residual Limb

The goal of wound management during this phase is to promote healing of the underlying soft tissue and to treat or reduce the risk of infections. In some instances, a drainage tube is inserted to remove fluids and aid in tissue repair. A member of your surgical team will do the dressing changes. Your role in wound management during this stage includes the following:

1. Notify your nurse if your dressing becomes soiled or you notice any leakage of drainage.
2. Wash your hands if you come in contact with drainage. Hand soap and hand sanitizers are available in your room.
3. Make sure everyone who comes in contact with your wound wears gloves and washes his or her hands before and after a dressing change.
4. In some instances, visitors may need to take special precautions to reduce the likelihood of transmitting an infection to others. In such cases, the nurses will review with you any special precautions for visitors. We are counting on you to see that these precautions are followed.
5. Exercise caution when moving in bed or getting in and out of bed so that you do not dislodge any dressings or drainage tubes. Notify the nursing staff if dressings become loose or dislodged.
6. Eat a healthy, well-balanced diet of foods rich in nutrients and vitamins. Tissues cannot heal if they are not provided with the necessary nutrition. Dietary supplements are often provided in addition to your meals to ensure that sufficient calories and protein are available to facilitate the healing process.
7. Inform members of your rehabilitation team if you experience pain during the care of your wound. By working together, you and your rehab team can establish a medication schedule that will minimize your discomfort during dressing changes.

Injuries that lead to amputation may also result in skeletal injuries to remaining limbs. As a result, you may have skeletal pins and/or an external fixator device applied to maintain bone alignment and promote healing of fractures. If you have one of these devices, your role in taking care of it and your skin will also include the following:

1. Wash your hands with soap and water.
2. Mix small amounts of sterile normal saline and hydrogen peroxide in a sterile container.
3. Saturate a sterile cotton swab applicator in the solution.
4. Using a circular, rolling motion of the cotton swab, cleanse the pin sites from the insertion site outward.
5. Avoid going over previously cleaned areas with a used swab.
6. Gently push down on the skin with the swab to prevent skin from adhering to the pin.
7. Leave the pin sites open to the air unless drainage is present. If drainage is present, pin sites can be covered with sterile gauze.
8. Notify a member of your rehabilitation team if you notice swelling, redness, pain, tenderness or a change in drainage from any of your pin sites.

 

Phase 2: Definitive Closure of the Residual Limb

The goal of wound management during this phase is to prepare your residual limb for prosthetic fitting. Initially, you will have sutures in place to close your surgical wound. These are usually removed in approximately 14-21 days. Your sutures will be covered with petroleum-impregnated gauze, and initially, bulky gauze dressings will be applied to provide additional protection. These dressings are typically changed twice daily, more if necessary. Once your sutures are removed, adhesive strips are applied as the final stage of your wound closure takes place. These strips will fall off naturally in about 5-7 days.

Throughout this stage in your wound-healing process, compression dressings will also be applied to reduce swelling and begin shaping your residual limb for prosthetic fitting. There are two types of compression dressings: rigid and soft. Rigid compression dressings are made from casting material and will be changed as the swelling in your residual limb decreases. Soft compression dressings are initially elastic bandages applied in a specific way to reduce the swelling at the lower portion of your residual limb. These bandages will need to be reapplied several times during the day to maintain proper compression. Members of the rehabilitation team will instruct you in the proper application of these bandages.

Your role in wound management now includes all of the previously listed items plus these additional responsibilities for rigid or soft dressings:

 

Rigid Compression Dressing

1. Keep the cast dry. Getting the cast material wet can weaken the cast, and damp padding can irritate your skin.
2. Avoid getting dirt or powder inside the cast.
3. Never stick objects inside the cast to scratch your skin. If itching persists, let your nurse know so other measures can be taken.
4. Notify a member of your rehabilitation team if you feel increased pain or numbness that may be caused by swelling or a cast that is too tight.

 

Elastic Bandage Compression Dressing

1. Do not pull at your sutures, even if the skin around the sutures itches.
2. Notify a member of your rehabilitation team if you notice any tearing or separation of the sutures.
3. Notify a member of your rehabilitation team if you notice that the skin around the sutures is red or swollen or if you notice any pus draining from the suture area.
4. Rewrap your residual limb several times during the day (usually at least 4-5 times) to maintain proper compression. This not only reduces the swelling and increases circulation and healing, but also reduces pain.
5. Obtain new elastic bandages if the ones you are using become soiled or lose elasticity.

 

Directions for Wrapping with an Elastic Bandage

(Below-knee, below-elbow and above-elbow amputations)

• Using a 4-inch-wide elastic bandage, go over the end of the limb, slightly stretching the bandage.
• Relax the stretch and secure the bandage by going around the limb once.
• Increase the stretch and go to one side of the center.
• Decreasing the stretch, go around back. Go up the other side of the center as you increase the stretch again.
• Repeat this figure-eight pattern until the end is securely bandaged and then secure the bandage with Velcro or tape. (Do not secure bandages with pins.)
• If the length below the knee or elbow is very short, you will need to make a similar figure-eight pattern above and below the joint and then secure the bandage.

(Above-knee amputations)

1. Use two 6-inch-wide elastic bandages. (Bandages can be sewn together.)
2. Wrap around the waist twice.
3. Wrap around the end of the limb.
4. Wrap back around the waist.
5. Wrap around the end of the limb.
6. Wrap around the waist and secure. (This is the anchor for the next bandage.)
7. Take another 6-inch-wide elastic bandage and, similar to the technique used for below-knee amputations, go over the end of the limb, slightly stretching the bandage.
8. Relax the stretch and secure the bandage by going around the limb once, then increase the stretch and go to one side of the center.
9. Decreasing the stretch, go around back, and then go up the other side of the center as you increase the stretch again. Repeat this figure-eight pattern until the end is securely bandaged, making sure to bandage all of the way up into the groin area. Secure the bandage with Velcro or tape. (Do not secure bandages with pins.)

Remember: For best results, you must reapply the elastic bandages whenever they loosen.

 

Wearing an Elastic Shrinker Sock

Using an elastic shrinker sock is another way to reduce swelling. These shrinker socks can be used alone or in combination with elastic bandages. If the limb is still very sensitive, it will be more comfortable to stretch the shrinker as it is being put on, either by using two pairs of hands or an appropriate-size ring made of a stiff material such as PVC.

Using Hands

1. With two people using all four of their hands (two can be the patient’s), put all of the fingers down to the bottom of the shrinker, thumbs on the outside, spare material scrunched down, and stretch out until the bottom of the shrinker is completely flat and stretched out.
2. Place the flat, inside part of the shrinker against the end of the amputated limb.
3. In one swift motion, keeping the stretch and letting the material slide from between the thumb and fingers, pull the shrinker up the limb.
4. There should be no gap between the end of the residual limb and the shrinker.
5. If this is for an above-knee amputee, make sure the long side is around the hip and the short side is all of the way into the groin.

Using a Ring

1. Make sure the chosen ring will slide easily all of the way to where the shrinker will end on the limb.
2. Stretch the shrinker over the ring until the end is flat.
3. Place the flat, inside part of the shrinker over the end of the limb and feed the shrinker up the limb until it is as high as needed.
4. Remove the ring.

 

Preparing for Prosthetic Training and Desensitizing Your Residual Limb

At this point in your rehabilitation, there are four techniques you can use to prepare your residual limb for prosthetic training: massage, tapping, desensitization and scar mobilization.

Massage and Tapping

Early massage and tapping of your residual limb will help you develop a tolerance in your residual limb to both touch and pressure. Both of these techniques can be performed through your soft compression dressings and when the soft compression dressing is off. Additionally, these techniques may help decrease your sensation of phantom pain.

Massage

1. Using one or two hands, massage your residual limb using a soft gentle kneading motion. Initially, be especially cautious when massaging over your sutured area.
2. Massage the entire residual limb.
3. Over time and once your sutures are removed, you can increase the pressure to massage the deeper soft tissues and muscles in your residual limb.
4. This should be done for at least 5 minutes, 3-4 times daily. It can be done more often if it is found to be helpful in reducing phantom pain.

Tapping

1. Tap your residual limb with your fingertips, being careful not to tap with your fingernails. Gentle tapping over the suture line is generally allowed even before your sutures are removed.
2. Over time and once your sutures are removed, you can increase to a slapping motion, using one or two hands.
3. Tapping should be done for 1-2 minutes, 3-4 times daily. It can be done more often if it is found to be helpful in reducing phantom pain.

Desensitization

Desensitization is the process of making your residual limb less sensitive. If you start with a soft material and progress to rougher materials, desensitization can help you increase your tolerance to touch in your residual limb.

1. This technique is done when you are not wearing your soft compression dressing. It should be done for 2-3 minutes twice daily and is usually done during bathing times.
2. Initially, start with a cotton ball and gently rub the skin of your residual limb, using a circular motion.
3. When you are able to tolerate it, progress to a rougher material such as a paper towel.
4. Finally, advance to a terry cloth towel.
5. This technique should be done until you can tolerate gentle friction from a terry cloth.

Scar Mobilization

This technique is done to keep the skin and scar tissue on your residual limb loose. Scar adherence to underlying tissue can be a source of pain when using your prosthesis and can also cause blistering. It is best performed when you are not wearing your compression dressing.

1. Place two fingers over a bony portion of your residual limb.
2. Press firmly and, keeping your fingertips in the same place on the skin, move your fingers in a circular fashion across the bone for about 1 minute. Continue this procedure on all of the skin and underlying tissue around the bone of your residual limb.
3. Once your incision is healed, use this procedure over your scar, moving your fingers in a circular fashion to loosen the scar tissue directly.
4. This technique should be done daily when you bathe.

Inspection of Your Residual Limb

1. Regular inspection of your residual limb, using a long-handled mirror, will help you identify skin problems early.
2. Initially, inspections should be done whenever you change your compression dressing. Later on, most amputees find daily inspection sufficient for the early identification of skin problems.
3. Inspect all areas of your residual limb. Remember to inspect the back and all skin creases and bony areas.
4. Report any unusual skin problems to a member of your rehabilitation team.

Showering

Permission to resume showering is based on a number of factors and is highly individualized. Your safety and other factors, such as the condition of other wounds and injuries, must all be considered. When you feel ready to resume showering, you should discuss the specifics of your situation with a member of your rehabilitation team. Ask questions about home adaptation, shower chairs and how family members can be trained on any assisted bathing or cleaning care if necessary.

 

Toilet

Some of the most embarrassing moments can occur while getting to or using the toilet. Discuss your options and limitations with your nurse or ask your peer visitor for advice and alternatives. Try to be patient; your new routine will be comfortable again soon.

 

About the Amputee Coalition

The Amputee Coalition is a donor-supported, nonprofit voluntary health organization serving more than 5.6 million people with limb loss and limb difference, and more than 28 million people at risk for amputation in the United States.

For more information, please call 888-267-5669 or visit the Amputee Coalition’s website at amputee-coalition.org.

 

Acknowledgement

This project was supported, in part, by grant number 90LLRC0001-01-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

Health disparities are largely preventable health differences that adversely affect populations who experience greater challenges to optimal health and are closely linked with intergenerational social, economic, and/or environmental disadvantages—primarily based on identification as an individual from a racial and/or ethnic minority group and/or by low socioeconomic status (SES) in society.

Health disparities may be observed in the risks, prevalence, or problems resulting from specific behaviors, as well as the incidence, prevalence, and mortality from conditions, diseases, and/or disorders. Health disparities also can be observed in health care access, quality, and utilization, and within the delivery of clinical care.

Understanding and Addressing Health Disparities

Racial and ethnic minority populations and low SES groups, on average, are facing high rates of most chronic diseases, medical comorbidities, and other health problems. These health disparities may be exacerbated by intersecting factors such as living in an underserved rural location, living with a disability, or identification with a sexual minority group. Intergenerational social disadvantages and discrimination are common threads that link all populations that experience health disparities.

Race and ethnicity are social constructs that should not be applied as a proxy for human genetic variation. The use of race and ethnicity as proxies for human genetic similarity can lead to conflation between social groups and genetic heritage.

SES is also a social construct with various indicators, such as educational attainment, employment, and income. There is a need for integrative and holistic research that provides explanations for the mechanisms by which structural, environmental, biological, and other contextual factors interact in additive and nonadditive ways to contribute to disease etiology and health outcomes.

Addressing health disparities in a meaningful way requires a comprehensive view of how health is maintained, improved, or worsened via modifiable influences, which include but are not limited to:

• Factors such as barriers to high-quality health care and adverse environmental and macro-level exposures (physical, chemical, and/or community-related elements) that may impact individual level factors such as:
  

  1. Biological factors and reactions (e.g., age, inherited conditions, stress hormones, metabolic perturbations).
  2. Gene expression (e.g., social epigenetics).
  3. Lifestyle and behavioral factors (e.g., tobacco use, physical activity, food consumption, decision-making).

See the NIMHD Research Framework for more information.

What Are Metrics of Health and Health Care Disparities?

Health disparities can be identified based on significantly greater or disproportionate morbidity or premature mortality that is preventable on one or more of the following measures:

1. Incidence and/or prevalence, including earlier onset of disease or higher prevalence of preclinical disease/biomarkers.
2. Premature or excessive mortality from specific conditions.
3. Population health disease metrics, such as life expectancy, disability adjusted life years, or health-related quality of life.
4. Condition-specific symptoms on validated self-reported measures that reflect daily functioning in physical, cognitive, or socio-emotional domains.
5. Prevalence of short-term and/or long-term preventable complications.
6. Prevalence of modifiable risks, health risk behaviors, and adverse clinical outcomes.
7. Inadequate, untimely, or differential access, utilization, or availability of high-quality health care services.

How Do Scientists Select an Appropriate Reference Population/Group in Racial and Ethnic Health Disparities Research^*?

• The choice of a reference population is important for benchmarking health outcomes and evaluating health disparities. The reference population in U.S. health disparities research has often utilized the racial majority group (i.e., White persons) as the reference group.
• The traditional conceptual and analytic practices of using White persons as the reference, and thus, the standard, may perpetuate stereotypes through deficit-based hypotheses and/or interpretations. Moreover, White persons often do not have significantly better outcomes than all other populations.
• The selected reference group in health disparities research must be chiefly guided by the scientific questions and potential for generalizable results. Reference group options include, but may not be limited to:
  

  1. The majority population/group in the geographic context.
  2. The population group with the best health outcome, lowest disease incidence/prevalence, lowest prevalence of risk factors, and/or lowest disease prevalence.
  3. The population group with largest sample size (in the study), which is also referred to as the majority-referenced approach.
  4. Setting absolute targets for outcomes based on societal goals, such as Healthy People 2030 goals, across all demographic groups, rather than focusing on variation across groups.
  5. Using a positive deviance approach, which focuses on people within population groups or subgroups who are thriving or showing positive health-related outcomes despite social, economic, and/or environmental disadvantages, rather than those who are not.

  
  

*

Page published March 13, 2025

Health disparities are largely preventable health differences that adversely affect populations who experience greater challenges to optimal health and are closely linked with intergenerational social, economic, and/or environmental disadvantages—primarily based on identification as an individual from a racial and/or ethnic minority group and/or by low socioeconomic status (SES) in society.

Health disparities may be observed in the risks, prevalence, or problems resulting from specific behaviors, as well as the incidence, prevalence, and mortality from conditions, diseases, and/or disorders. Health disparities also can be observed in health care access, quality, and utilization, and within the delivery of clinical care.

NIH-Designated Populations with Health Disparities:

Racial and/or Ethnic Minority Populations as defined by the U.S. Office of Management and Budget, Directive 15:

• American Indian or Alaska Native: Individuals with origins in any of the original peoples of North, Central, and South America, including, for example, Navajo Nation, Blackfeet Tribe of the Blackfeet Indian Reservation of Montana, Native Village of Barrow Inupiat Traditional Government, Nome Eskimo Community, Aztec, and Maya.
• Asian: Individuals with origins in any of the original peoples of Central or East Asia, Southeast Asia, or South Asia, including, for example, Chinese, Asian Indian, Filipino, Vietnamese, Korean, and Japanese.
• Black or African American: Individuals with origins in any of the Black racial groups of Africa, including, for example, African American, Jamaican, Haitian, Nigerian, Ethiopian, and Somali.
• Hispanic or Latino: Includes individuals of Mexican, Puerto Rican, Salvadoran, Cuban, Dominican, Guatemalan, and other Central or South American or Spanish culture or origin.
• Middle Eastern or North African: Individuals with origins in any of the original peoples of the Middle East or North Africa, including, for example, Lebanese, Iranian, Egyptian, Syrian, Iraqi, and Israeli.
• Native Hawaiian or Pacific Islander: Individuals with origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands, including, for example, Native Hawaiian, Samoan, Chamorro, Tongan, Fijian, and Marshallese.

Low Socioeconomic Status (SES): SES is a multidimensional social construct and demographic factor that encompasses indicators such as income, educational attainment, occupational status, and access to resources, such as housing and health care. Individuals and households considered low SES include those earning a low income (sometimes referred to as the “working poor”) or experiencing varying levels of poverty. People with lower SES typically have limited access to financial, educational, social, and health resources compared to those with higher socioeconomic status.

Note that SES is complex, dynamic, and influenced by various individual, family, and societal factors. Additionally, definitions and thresholds of low SES can vary depending on the context, such as the region, or specific research study.

Evidence-based individual-level measures of low SES include:

• Education Level:
  

  • Less than a high school diploma
  • No college degree

  
  




• Income Level:
  

  • Below 200% of the federal poverty threshold
  • 80% of the area median individual income

  
  




• Occupation:
  

  • Unemployed or underemployed
  • Working in low-wage, high-risk jobs (e.g., food service, labor)

  
  

Underserved Rural Populations: Rural is defined as all populations, housing, and territory not included within an urbanized area or urban cluster. The degree of rurality is driven by geographic distance; counties and other geographic locations that are not considered part of a Metropolitan Statistical Area (MSA), as defined by the Office and Management and Budget (OMB) are considered rural and referred to as non-metro. Additionally, rural locations can be identified using rural-urban commuting area (RUCA) codes, which classify U.S. census tracts using measures of population density, urbanization, and daily commuting to access needed resources. Underserved rural communities include health professional shortage areas with limited or inadequate access to economic and social resources, and/or medical services in locations outside of an MSA.

People with Disabilities: Refers to individuals who experience impairments that substantially limit one or more major life activities or major bodily functions, thereby affecting their capacity to carry out routine activities essential to daily living [Americans with Disabilities Act (ADA), 2008 amendments and Section 504 of the Rehabilitation Act (Section 504); Centers for Disease Control and Prevention (CDC)].

The ADA and Section 504 define a person with a disability as an individual who has a physical or mental impairment that substantially limits one or more major life activities.1 Major life activities include walking, standing, thinking, seeing, communicating and hearing. The 2008 amendment to the ADA broadened the scope to include “major bodily functions,” recognizing that impairments affecting bodily functions such as the circulatory, respiratory, digestive, or reproductive systems can also substantially limit an individual’s daily functioning. Additionally, the CDC emphasizes the impact of impairments on an individual’s capacity to engage in activities necessary for independent living and full participation in society.

Sexual Minority Groups: Sexual minority refers to an individual whose sexual orientation differs from the heterosexual majority. Sexual minority status is often defined by self-identification, behavior (e.g., disclosure of same-sex sexual partners within a specified timeframe), or attraction (e.g., romantic or sexual attraction to people of the same or both sexes).

Page published March 7, 2025

What is miscarriage?

Miscarriage (also called early pregnancy loss) is pregnancy loss that happens before 20 weeks. It’s estimated that between 10 to 20 in 100 known pregnancies (10 to 20 percent) end in miscarriage. Some research suggests that more than 30 percent of pregnancies end in miscarriage, and many end before a person even knows they’re pregnant. Most miscarriages – 8 out of 10 (80 percent) – happen in the first trimester before the 12^th week of pregnancy. Many people who miscarry are able to go on to have a healthy pregnancy later.

Understanding types of miscarriages

Miscarriages can happen in different ways, that’s why it’s important to know the different signs and symptoms.

Threatened miscarriage: This happens when there’s bleeding, little or no pain, and the cervix remains closed (undialated). The baby may still have a heartbeat, and in most cases, the pregnancy continues without issue.

Incomplete miscarriage: This means a miscarriage has happened, but the body doesn’t push out all of the tissue from pregnancy. You may have bleeding, cramping and other signs and symptoms of miscarriage.

Complete miscarriage: This is when your body pushes out all of the tissue from the pregnancy. You may pass tissue suddenly or after having medical treatment.

Asymptomatic miscarriage: Also called an empty sac pregnancy, it’s possible to have no symptoms at all, such as bleeding or cramping, and may require medical treatment to remove the tissue.

Repeat miscarriages. Recurrent pregnancy loss is when two or more consecutive miscarriages occur. The risk of future miscarriages increases after each loss.

What are repeat miscarriages and what causes them?

Repeat miscarriages, or recurrent pregnancy loss, is the loss of two pregnancies in a row. About 2 in 100 pregnant people (2 percent) have repeat miscarriages.

We don’t know what causes every miscarriage. But some miscarriages and repeat miscarriages can be caused by:

Problems with chromosomes

This usually happens by chance and is not caused by a problem that’s passed from parent to child through genes. Chromosomes are the structures in cells that holds genes. Each person has 23 pairs of chromosomes, or 46 in all. For each pair, you get one chromosome from your mother and one from your father. 

Problems with the uterus or cervix.

Problems with the uterus and cervix that can cause miscarriage after 12 weeks but before 20 weeks include:

• Septate uterus. This is when a band of muscle or tissue (called a septum) divides the uterus in two sections. If you have a septate uterus, your provider may recommend surgery before you try to get pregnant to repair the uterus to help reduce your risk of miscarriage. Septate uterus is the most common kind of congenital uterine abnormality. Septate uterus is a common cause of repeat miscarriages.
• Asherman syndrome. If you have this condition, you have scars or scar tissue in the uterus that can damage the endometrium (the lining of the uterus). Before you get pregnant, your provider may use a procedure called hysteroscopy to find and remove scar tissue. Asherman syndrome may often cause repeat miscarriages that happen before you know you’re pregnant.
• Fibroids and polyps or scars from surgery on the uterus. Fibroids, polyps and scars can limit space for your baby or interfere with your baby’s blood supply. Before you try to get pregnant, you may need a surgery called myomectomy to remove them.
• Cervical insufficiency (also called incompetent cervix). This is when your cervix opens (dilates) too early during pregnancy, usually without pain or contractions. To help prevent this, your provider may recommend cerclage. This is a stitch your provider puts in your cervix to help keep it closed.

Infections

Infections can cause miscarriage.  Common infections include:

• Parvovirus B19. Parvovirus causes fifth disease, a common childhood illness.
• Cytomegalovirus
• Sexually transmitted infections (STIs).  STIs, such as genital herpes and syphilis, are infections you can get from having sex with someone who is infected. If you think you may have an STI, tell your health care provider right away. Early testing and treatment can help protect you and your baby. 
• Listeriosis.  Listeriosis is a kind of food poisoning. If you think you have listeriosis, call your provider right away. Your provider may treat you with antibiotics to help keep you and your baby safe.

Other possible causes of miscarriage include:

Are you at risk for a miscarriage?

Some things may make you more likely than other pregnant people to have a miscarriage. These are called risk factors. Risk factors for miscarriage include:

• Having two or more previous miscarriages
• Being 35 or older. As you get older, your risk of having a miscarriage increases. The age of your partner also may increase the risk of miscarriage.
• Smoking, drinking alcohol or using street drugs. Street drugs include cocaine and methamphetamines. If you’re pregnant or thinking about getting pregnant and need help to quit, tell your provider.  
• Being exposed to harmful chemicals. You or your partner having contact with harmful chemicals, like solvents, may increase your risk of miscarriage. A solvent is a chemical that dissolves other substances, like some detergent mixtures and paint thinner. Exposure to lead, arsenic, radiation or air pollution can also be harmful. Talk with your provider about what you can do to protect yourself and your baby.

Some health conditions may increase your risk for miscarriage. Treatment of these conditions before and during pregnancy can sometimes help prevent miscarriage and repeat miscarriages. If you have any of these health conditions, tell your health care provider before you get pregnant or as soon as you know you’re pregnant: 

• Autoimmune disorders. These health conditions happen when the body attacks its own healthy tissue by mistake. Autoimmune disorders that may increase your risk of miscarriage include antiphospholipid syndrome and lupus (also called systemic lupus erythematosus or SLE). If you have antiphospholipid syndrome, your body makes antibodies that attack certain fats that line the blood vessels; this can sometimes cause blood clots. If you have antiphospholipid syndrome and have had repeat miscarriages, your provider may give you low-dose aspirin and a medicine to help prevent another miscarriage.
• Obesity. This means your body mass index (also called BMI) is 30 or higher. BMI is a measure of body fat based on your height and weight. To find out your BMI, use the CDC’s BMI calculator.
• Hormone problems, such as polycystic ovary syndrome (also called PCOS) and luteal phase defect. Hormones are chemicals made by the body. Progesterone is a hormone that helps regulate your periods and gets your body ready for pregnancy. Luteal phase defect is when you have low levels of progesterone over several menstrual cycles. If you have luteal phase defect, your provider may recommend treatment with progesterone before and during pregnancy to help prevent repeat miscarriages.
• Preexisting diabetes 
• Preexisting hypertension
• Thyroid problems
• Severe kidney disease
• Congenital heart disease
• Severe malnutrition. This means not getting enough food or nutrients before getting pregnant.
• Group B beta strep infection
• Certain prenatal tests, such as amniocentesis and chorionic villus sampling. These tests have a slight risk of causing a miscarriage. Your provider may recommend them if your baby is at risk for certain genetic conditions, such as Down syndrome.

Having an injury to your belly, such as from falling or getting hit or a motor vehicle accident, may be a risk for miscarriage depending on the force of the injury or fall. Your body usually does a good job of protecting your baby in the early weeks of pregnancy. If this happens, contact your provider to make sure you and your baby are not injured.

Other factors that may increase your risk of miscarriage include:

• Certain medications. Some studies show that nonsteroidal anti-inflammatory medications (also called NSAIDS) including ibuprofen, naproxen and diclofenac may increase risk. NSAIDs are a type of medicine used to relieve pain and swelling. The acne medicine isotretinoin has also been linked to miscarriage and fetal abnormalities.
• Getting pregnant while using an intrauterine device (IUD). IUDs are devices placed in your body to prevent pregnancy. In rare cases, people can get pregnant while using an IUD.
• Stress. Both short, intense times of stress and long-term stress can increase the risk of miscarriage.

You may have heard that getting too much caffeine during pregnancy can increase your risk for miscarriage. Caffeine is a drug found in foods, drinks, chocolate and some medicine. It’s a stimulant, which means it can help keep you awake. More research is needed to understand the effect of caffeine on pregnancy. Until we know more about how caffeine can affect pregnancy, it’s best to limit the amount you get to 200 milligrams each day. This is what’s in about one 12-ounce cup of coffee.

You also may have heard that having sex or exercising while pregnant can cause a miscarriage. There is no proof that this is true.

How can you prevent a miscarriage?

Miscarriages usually can’t be prevented, but being healthy before pregnancy can help prevent pregnancy complications. Good pre-pregnancy health includes getting a pre-pregnancy checkup and talking with your provider about health conditions that can affect your pregnancy. It also includes taking folic acid to help prevent birth defects and making changes in your life that may affect the health of your baby.

What are the signs and symptoms of miscarriage?

Signs and symptoms of miscarriage include:

• Bleeding from the vagina or spotting. Many people experience spotting early in their pregnancy. In most cases, it is not a sign of miscarriage. To be safe, if you have spotting or any of these signs or symptoms, call your provider.
• Cramps, like the ones you have with your period
• Severe belly pain
• Back pain
• Vaginal discharge with a bad smell
• Fever

Many pregnant people have these signs and symptoms in early pregnancy and don’t have a miscarriage. But if you think you might be having a miscarriage, tell your health care provider right away. Your provider may want to do some tests to make sure everything’s OK. These tests can include blood tests, a pelvic exam and an ultrasound.

What treatment do you get after a miscarriage or repeat miscarriages?

Treatment depends on how far along you were in your pregnancy, your overall health, your age and other factors. If you’ve had a miscarriage, your provider may recommend:

1. Dilation and curettage (also called D&C). This is a procedure to remove any remaining tissue from the uterus. Your provider dilates (widens) your cervix and removes the tissue using an instrument called a curette.
2. Dilation and extraction (also called D&E). This is a procedure to remove any remaining tissue from the uterus. Your provider dilates (widens) your cervix and removes the tissue using suction.
3. Medicine. Your provider may recommend medicine that can help your body pass tissue that’s still in the uterus. If your blood type is Rh negative, you also may get a shot of Rh immunoglobulin after any miscarriage or bleeding episode in pregnancy. This can help prevent problems with future pregnancies. Rh immunoglobulin is a medicine that stops a person who is Rh negative from reacting to Rh-positive blood.

Do you need any medical tests after a miscarriage or repeat miscarriages?

If you miscarry in your first trimester, you probably don’t need any medical tests. Because we don’t often know what causes a miscarriage in the first trimester, tests may not be helpful in trying to find out a cause.

If you have repeat miscarriages in the first trimester, or if you have a miscarriage in the second trimester, your provider usually recommends tests to help find out the cause. Tests can include:

• Chromosome tests. 
• Hormone tests.
• Blood tests to check your immune system. 
• Looking at the uterus. 

How long does it take to recover from a miscarriage?

It can take a few weeks to a month or more for your body to recover from a miscarriage. Depending on how long you were pregnant, you may have pregnancy hormones in your blood for 1 to 2 months after you miscarry. Most women get their period again 4 to 6 weeks after a miscarriage. Talk to your provider about how to care for yourself during this time.

It may take longer to recover emotionally from a miscarriage. You may have strong feelings of grief about the death of your baby. Grief can make you feel sad, angry, confused or alone. It’s OK to take time to grieve after a miscarriage. Ask your friends and family for support, and find special ways to remember your baby. For example, if you already have baby things, like clothes and blankets, you may want to keep them in a special place. Do what’s right for you. Ask your provider about support groups or services that can help you with recovery from grief.

Certain things, such as hearing names you were thinking of for your baby or seeing other babies, can be painful reminders of your loss. You may need help learning how to deal with these situations and the feelings they create. A support group can help. Tell your provider if you need help to deal with your grief.

If you miscarry, when can you try to get pregnant again?

This is a decision for you to make with your partner and your provider. Be sure to take a vitamin supplement that has 400mcg of folic acid even if you don’t get pregnant right away. If you’re having medical tests to try to find out more about why you miscarried, you may need to wait until after you’ve had these tests to try to get pregnant again.

You may not be emotionally ready to try again so soon. Miscarriage can be hard to handle, and you may need time to grieve. It’s OK if you want to wait a while before trying to get pregnant again.

More information

From Hurt to Healing (free booklet from the March of Dimes for grieving parents)

Centering Corporation (grief information and resources)

Share Pregnancy & Infant Loss Support (resources for families with pregnancy or infant loss)

Last reviewed: October 2024

Why Clinical Trials Are Critical to Progress against Cancer

Clinical trials are essential for moving new methods of preventing, diagnosing, and treating cancer from the laboratory to physicians’ offices and other clinical settings and, ultimately, to improve care and quality of life for people with cancer.

In clinical trials, researchers carefully and methodically test drugs, medical devices, screening approaches, behavioral modifications, and other interventions. Trials are used to answer many different clinical questions relevant to all aspects of health care, such as whether a treatment can prevent cancer in people at increased risk, whether a new drug can extend the lives of patients with advanced cancer, or whether specific treatment approaches can improve patients’ quality of life.

The Food and Drug Administration (FDA) typically requires proof of safety and effectiveness of a new anticancer drug in a large clinical trial before it can be used broadly in patient care.

In addition to testing new interventions, clinical trials can help determine the best use of existing interventions, test new approaches for increasing the number of people who seek follow-up care after a positive cancer screening test, and test ways to improve end-of-life care for patients.

How New Knowledge about Cancer Is Changing Clinical Trials

Over the last two decades, biomedical researchers have begun to unravel cancer’s immense complexity, drilling down to the molecular level to better understand the genetic and biological changes that drive how cancers develop, grow, and spread. Today, researchers are able to sequence the genome of an individual patient’s cancer more quickly and more cheaply than ever before, making precision medicine possible.

This greater understanding of cancer and how tumors behave at the molecular level has allowed scientists to develop a new generation of targeted drugs and immune-based therapies, identify biomarkers that can be used to guide therapy and select patients who are most likely to respond to a drug, and develop novel strategies to detect difficult-to-treat cancers early.

The practice of clinical trials is evolving to keep pace with these advances in the scientific understanding of cancer. Already, for example, investigators are conducting fewer very large trials in which all patients, regardless of the underlying biology of their cancers, are randomly assigned to receive the experimental or control treatment. These large trials often require large numbers of participants to detect an effect because, often, too few patients respond to the experimental therapy to draw a definitive conclusion.

NCI is adapting its clinical trials programs to build on new research insights that target molecular alterations and only test the experimental therapy in the selected population. This approach can increase the speed and efficiency of clinical trials, as only the patients most likely to benefit are included in the trial.

How NCI Programs Make a Difference

NCI has a broad array of programs that support clinical research, including programs that facilitate the development of new interventions, from the initial creation of candidate drugs in the lab to final testing in late-stage clinical trials.

Many NCI-supported clinical trials are designed not simply to test an intervention, but to identify the optimal approaches to treatment with the goal of improving patient outcomes. This includes trials that test combinations of therapies—including surgery, radiation therapy, chemotherapy, and new targeted agents—to determine which may be most beneficial in certain subgroups of patients. Trials like these are not typically supported by the private sector.

A hallmark of NCI trials is a commitment to involving participants who are representative of the US population—including patients of different racial, ethnic, and socioeconomic backgrounds—to ensure that trial findings are broadly applicable. In addition, data and specimens from NCI-supported trials are made available to researchers worldwide to further scientific discovery.

NCI-supported trials also incorporate translational endpoints, measures that can be used to inform translation of the findings beyond the study population. This allows investigators to learn from both positive and negative findings, and it means that trial findings may be used to inform more than just patient outcome.

Early-Phase Clinical Trials: Building on Basic and Preclinical Advances

Early-phase clinical trials, which test promising new agents in small numbers of patients, are critical to developing new cancer treatments and interventions. These initial trials set the stage for the larger trials needed to determine whether a drug is safe and effective. As cancer therapy becomes more precisely targeted to the unique molecular profile of a patient’s tumor, early-phase trials are taking on greater importance.

• NCI Trials at the NIH Clinical Center

  The researcher-physicians in NCI’s Center for Cancer Research conduct hundreds of trials each year at the NIH Clinical Center in Bethesda, MD—the only hospital in the world dedicated solely to medical research. Many of these small trials test cutting-edge treatments and technologies, often in patients with advanced cancers that no longer respond to standard therapy. These trials test new treatment and supportive care approaches, and lay the foundation for similar trials to be conducted at NCI-supported centers across the country.

• Experimental Therapeutics Clinical Trials Network (ETCTN)

  The NCI Experimental Therapeutics Clinical Trials Network conducts early-stage trials of targeted therapies and combinations of therapies and is an important venue for identifying promising new treatments to test in late-stage trials funded by NCI and the private sector.

  ETCTN trials enroll patients based on the molecular profiles of their tumors. Comprehensive molecular analyses of patients’ tumor and blood samples and advanced imaging studies are built into many ETCTN trials to measure specific functional changes in patient’s tumors or to identify biomarkers that may predict response to treatment.

  ETCTN includes a comprehensive process for designing and launching trials, including the formation of drug-specific project teams made up of investigators with expertise in clinical, translational, and basic sciences. These investigators, from within and outside NCI, have expertise in the drugs being tested, the molecular targets of the drug or drug class, and the disease being studied. Among other tasks, the teams formulate proposals for early-stage trials of a given drug or drug combination.

• Cancer Prevention Clinical Trials Network (CP-CTNet)

  The Cancer Prevention Clinical Trials Network (CP-CTNet) performs early phase clinical trials to assess the safety, tolerability, and cancer preventive potential of agents and interventions of varying classes, many of which target molecules or processes known to be important during carcinogenesis. These trials include phase 0 (micro-dosing), phase I (dose-finding), and phase II (preliminary efficacy) clinical trials. The goal is to identify safe and effective preventive interventions in order to advance their further clinical development for cancer prevention.

Phase II and Phase III Trials: Testing Effectiveness

Phase II clinical trials provide additional evidence of biological effects against cancers, and phase III trials provide the most definitive evidence for whether a drug or treatment is effective. NCI supports a wide array of late-stage and community-based clinical trials. As part of NCI’s clinical trials programs, more than 3,100 institutions and 14,000 investigators have been involved, and 20,000 to 25,000 patients have been enrolled in clinical treatment and advanced imaging trials each year over the past decade.

• National Clinical Trials Network (NCTN)

  The cornerstone of NCI’s transformed clinical trials program, the NCTN is a network of organizations and clinicians that conduct large phase II and phase III clinical trials across the United States and Canada that help to establish new standards of care, set the stage for FDA approval of new therapies, test new approaches to radiation therapy and surgery, and validate new biomarkers. NCTN provides an infrastructure for NCI-funded treatment, screening, and diagnosis trials at over 3,000 clinical trials sites.

  NCTN supports several precision medicine trials that use genomic screening to identify patients who are appropriate for the trials and will match patients to the appropriate intervention arm of the trial based on the molecular profiles of their tumors. By testing treatments that are tailored to the underlying biology of patients’ tumors, these trials are designed to overcome some of the greatest challenges facing cancer research: increasing the success rate of clinical trials and the speed with which safe and effective cancer therapies are made available to patients.

  These trials also contribute to another important NCI goal: increasing collaboration with the private sector to improve access to promising investigational drugs or combinations of therapies.

• NCI Community Oncology Research Program (NCORP)

  NCORP is a national network of investigators, cancer care providers, academic institutions, and other organizations that conduct multisite cancer clinical trials and studies of diverse populations in community-based health care systems across the United States and Puerto Rico. NCORP brings cancer clinical trials and cancer care delivery research to individuals in their own communities.

  Treatment, imaging, prevention, screening, health-related quality of life, and comparative effectiveness trials are generating a broadly applicable evidence base that contributes to improved patient outcomes and a reduction in cancer disparities. The scope of NCORP also extends to the study of how health care delivery settings and organizations may affect treatment outcomes or preventive interventions.

• Cancer Screening Research Network (CSRN)

  CSRN conducts rigorous multicenter trials and studies with large and diverse populations to evaluate promising and emerging cancer screening technologies. These cancer screening trials and studies aim to improve the early detection of cancer and reduce cancer-related deaths. This national network includes teams of primary care physicians and specialists who actively engage in cancer screening and can enroll participants into trials.

  CSRN research addresses questions related to issues of cancer screening, including efficacy, effectiveness, best practices, and implementation. This research evaluates the benefits and harms of promising new technologies for cancer screening to determine how best to use those technologies. 

  In 2024, CSRN will begin enrolling healthy people in a pilot Vanguard study to prepare for a larger randomized controlled trial to evaluate multicancer detection tests.  

Correlative and Quality of Life Studies: Improving Standard Clinical Practice

• The Biomarker, Imaging and Quality of Life Studies Funding Program (BIQSFP)

  BIQSFP supports biomarker, imaging, and quality-of-life studies that are embedded in NCTN clinical trials. These studies will often be used to identify or validate targets for new drugs and investigate new tests that can predict whether a patient will respond to a given treatment, as well as test ways to enhance clinical trial design and improve clinical trial accrual and retention.

How NCI Is Supporting Cutting-Edge Clinical Trials

With a greater reliance on sophisticated technologies and more complex clinical trial designs, NCI has assembled a host of programs that provide important resources for researchers and institutions to lead and participate in NCI-supported trials. These resources help to streamline trial operations, improve efficiency, and reduce administrative burdens.

This support allows the clinicians and care providers who run trials more time to focus on patient care and research. These programs include:

• Coordinating Center for Clinical Trials (CCCT)

  The CCCT manages the expert scientific steering committees that review proposed trials and provide scientific expertise and guidance, coordinates the NCI clinical trials oversight committees—the Clinical Trials and Translational Research Advisory Committee (CTAC) and the Clinical and Translational Research Operations Committee (CTROC)—and facilitates clinical trial data reporting.

• NCI Central Institutional Review Board (CIRB)

  The CIRB provides human subjects protection review of studies for NCI’s national multicenter cancer trials networks. Institutions across the country rely on the CIRB’s national experts to ensure that studies are reviewed efficiently and with the highest ethical standards. The CIRB is structured to greatly reduce the administrative burden for institutions participating in NCI-sponsored clinical trials.

• Cancer Trials Support Unit (CTSU)

  The CTSU provides researchers with easy-to-access online information about NCI-sponsored clinical trials with the goal of speeding accrual and enrollment to these trials. The CTSU provides investigators and their staff with a uniform approach to managing regulatory requirements and patient enrollment in trials, as well as providing funding information and educational materials for each trial.

• Clinical Trials Innovation Unit (CTIU)

  The CTIU is an authoritative body made up of experts from NCI, FDA, academia, and the private sector that aims to improve clinical trials and facilitate the testing of innovative cancer biomarkers and treatments. The CTIU seeks input from the research community on ways to bring new cancer treatments to people more quickly. Proposals for clinical trials will be considered about three times a year.

• National Clinical Trials Network Tissue Banks

  The NCTN groups collect and store tissue from patients in NCTN trials in a harmonized network of tissue banks. Standard protocols have been developed to ensure that the tissue collected is of the highest quality. Computerized records of the stored samples will have important clinical details, such as the treatments received by the patients from whom the tissue was taken, treatment response, and patient outcome. Participants in NCTN trials may consent to the use of their tissue specimens for studies beyond the NCTN trial in which they are enrolled. A web-based system allows any researcher, including one who is not affiliated with the NCTN, to query the system about the availability of tissue that meets certain criteria and track the review and approval process of any request to use samples.

• NCI Formulary

  This public–private partnership between NCI and pharmaceutical and biotechnology companies will give investigators at NCI-Designated Cancer Centers quicker access to approved and investigational agents for use in cancer clinical trials. Eligible investigators will be able to apply for access to agents from the available formulary list and test them in new preclinical or clinical studies, including combination studies of formulary agents from different companies.