MoonDragon's Pregnancy Information
SUDDEN INFANT DEATH SYNDROME (SIDS)
Every year, nearly 3,000 seemingly healthy babies in the United States die of sudden infant death syndrome - a condition also known as SIDS, cot death, sudden infant death, unexplained (SIDU), or crib death.
Sudden Infant Death Syndrome (SIDS) is defined as the "sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history" (Willinger, et al., 1991).
SIDS strikes suddenly and silently, usually at night. Typically, a peacefully sleeping baby simply never wakes up. In most cases, no cause is ever found, and the death is best described as a SIDS death.
THE MOST COMMON CHARACTERISTICS OF SIDS
Most researchers now believe that babies who die of SIDS are born with one or more conditions that make them especially vulnerable to stresses that occur in the normal life of an infant, including both internal and external influences. SIDS occurs in all types of families and is largely indifferent to race or socioeconomic level. SIDS is unexpected, usually occurring in otherwise apparently healthy infants from 1 month to 1 year of age. The condition rarely occurs before 2 weeks or after 6 months of age. Most deaths from SIDS occur by the end of the sixth month, with the greatest number taking place between 2 and 4 months of age. A SIDS death occurs quickly and is often associated with sleep, with no signs of suffering. More deaths are reported in the fall and winter (in both the Northern and Southern Hemispheres) and there is a 60- to 40-percent male-to-female ratio. A death is diagnosed as SIDS only after all other alternatives have been eliminated: SIDS is a diagnosis of exclusion.
Exactly why SIDS occurs remains elusive. Over the years, researchers have investigated a number of possible causes, including suffocation, vomiting or choking, birth defects, metabolic abnormalities, infection, and altered development in the parts of the brain that control breathing. New research has focused on the way babies breathe while they are asleep - especially their response to low blood oxygen levels (hypoxia) - and on heart problems. Extremely low heart rhythms that occur suddenly and do not improve with resuscitation have been seen in some SIDS babies. It is still unclear why this occurs.
Researchers are also investigating a possible link between SIDS and long QT syndrome, a subtle electrical disturbance in the heart that causes sudden, extremely rapid heart rates. Researchers suspect that some SIDS babies have a gene for this syndrome. On the other hand, most deaths from long QT syndrome occur during exercise, rather than during sleep as SIDS deaths do. And if long QT syndrome is the cause of SIDS, it does not explain why back sleeping reduces a child's risk or why only very young infants are affected.
Still, if you have a history of SIDS in your family, your health care provider or midwife will want to check for the presence of long QT syndrome in your infant. This can usually be done with an electrocardiogram (ECG) and confirmed, if necessary, with genetic studies.
Some factors that probably do not cause crib death include:
A toxin or poison in the baby's environment. The notable exception to this is cigarette smoke. Babies exposed to secondhand smoke have a harder time waking up or being awakened from sleep, which researchers believe increases the risk of SIDS.
Immunizations or a lack of immunizations. Some people believe that the multiple vaccinations American infants receive may play a role in SIDS. But a statement issued by the American Academy of Pediatrics in October 2005 says there is no association between immunizations and SIDS. At the same time, there is no evidence that children who are not vaccinated are at increased risk. The issue of vaccination should be carefully considered for many reasons. For more information about vaccinations, see MoonDragon's Vaccination Awareness Pages.
Exposure to electrical or magnetic fields or to household pets. In addition, SIDS does not seem to be caused by allergies or allergic reactions.
In the long run, it may be that SIDS does not have a single cause but rather occurs because of a complex interaction among many factors, including the way infants develop, their physiological responses to stress and exposure to environmental stressors.
For now, you can take preventive steps that can reduce the risk to your infant. And if a baby dies suddenly or unexpectedly, it can be extremely important to have a detailed autopsy performed to look for signs of infection or metabolic problems.
RISK FACTORS FOR SIDS
Although the cause of SIDS is still unknown, researchers have discovered a number of factors that may put babies at risk. They have also identified simple measures parents can take to help protect their children. Perhaps the most important of these involves placing infants to sleep on their backs instead of their stomachs.
Risk factors are those environmental and behavioral influences that can provoke ill health. Any risk factor may be a clue to finding the cause of a disease, but risk factors in and of themselves are not causes.
Researchers now know that the mother's health and behavior during her pregnancy and the baby's health before birth seem to influence the occurrence of SIDS, but these variables are not reliable in predicting how, when, why, or if SIDS will occur.
INFANT RISK FACTORS INCLUDE:
- Male. Boy babies are more likely to die of SIDS than girl babies are.
- Between 2 weeks and 6 months of age. Infants are most vulnerable in the second and third months of life.
- Premature or of low birth weight. Your baby is more susceptible to SIDS if he or she is premature or weighs 4.4 pounds or less at birth.
- Black or American Indian. For reasons that are not well understood, race appears to play a role in SIDS. A higher incidence of certain metabolic conditions may put some children at greater risk. Researchers have also identified a collection of genetic mutations, mainly affecting black babies, that may play a role. And cultural differences in child-care practices - such as whether babies are placed to sleep on their backs - are likely a factor.
- Placed to sleep on their stomachs. Babies who sleep on their stomachs are much more likely to die of SIDS than are babies who sleep on their backs. At highest risk are babies used to sleeping on their backs who are suddenly switched to stomach sleeping. At one time, health care providers recommended stomach sleeping because babies rest more soundly in that position. But it is now known that stomach sleeping greatly increases a baby's risk.
- Born to mothers who smoke or use drugs. Smoking cigarettes during or after your pregnancy or using drugs such as cocaine, heroin or methadone while you are pregnant puts your baby at considerably higher risk of SIDS. The risk from smoking increases with the number of cigarettes smoked.
- Exposed to tobacco smoke. Infants exposed to secondhand smoke are harder to rouse from sleep, which increases the risk of SIDS.
- Formula Vs Breastfeeding: Several studies performed in the United States and other industrialized nations reveal increased risks of SIDS among babies who receive formula instead of breast milk. A 2002 Scandinavian study takes into account variables thought to have affected the 2000 U.S. study, finding even stronger risks associated with formula. The most recent U.S. study (2003) takes advantage of the lessons from these earlier studies to raise confidence in its final results. It is a finding of five times the risk of infant death from SIDS for formula-fed infants seems to be the most powerful statistic yet. To see this article found at www.babyreference.com: Click here.
- Born to mothers with placenta previa. A serious complication of pregnancy, placenta previa occurs when the placenta covers all or part of the cervix, often leading to heavy bleeding in the second or third trimester. Placenta previa poses real risks for both women and their unborn children and usually requires complete bed rest until delivery. When bleeding cannot be controlled, health care providers and midwives are likely to deliver the baby immediately by cesarean section.
- Most SIDS deaths occur in the Winter.
- Researchers are currently studying the possibility that SIDS may result from problems with the brain's ability to control breathing and/or temperature during the first few months of life. As the baby's brain matures, this risk is reduced. However, more research is needed to determine whether there is a relationship between brain control of breathing and SIDS.
MATERNAL RISK FACTORS INCLUDE:
- Cigarette smoking during pregnancy. Avoid smoking before, during, and after pregnancy. If you are planning on getting pregnant, cease smoking habits before conception occurs.
- Maternal age less than 20 years.
- Multiple pregnancy.
- Poor or no prenatal care during pregnancy.
- Low weight gain.
- Use of illegal or recreational drugs. Unless otherwise recommended by your health care provider or midwife, all drugs (prescription and non-prescription) drugs should be avoided during pregnancy and while breastfeeding. Drugs used during labor for pain relief should be avoided if at all possible since these also can cause side effects and breathing difficulties in a newborn baby.
- History of sexually transmitted disease (STD).
- History of urinary tract infection (UTI).
These factors, which often may be subtle and undetected, suggest that SIDS is somehow associated with a harmful prenatal environment.
Sudden infant death syndrome (SIDS) has no symptoms or warning signs. Babies who die of SIDS seem healthy before being put to bed, show no signs of having struggled, and are often found in the same position as when they were put to bed.
Only about 5 percent of babies who die of SIDS have a history of apparent life-threatening events (ALTE), and the relationship between SIDS and ALTE is unclear. During ALTE, a baby has abnormally long pauses in breathing (longer than 20 seconds). The skin changes color (bluish and blotchy) or becomes pale, and the body stiffens and then goes limp. The baby may also choke or gag. One or more ALTE events have been suspected in some babies who later died of SIDS. However, machines (apnea monitors) that are commonly used to detect these periods of interrupted breathing have not been effective in preventing SIDS.
Studies have found that some risk factors are associated with sudden infant death syndrome (SIDS), although the relationships are not entirely clear. There is no guaranteed way to prevent SIDS, but you can help your baby sleep safely. You can take the following precautions that may help reduce your baby's risk of SIDS:
Take care of yourself during pregnancy. During pregnancy, you can lower your baby's risk for SIDS by getting prenatal health care and taking general precautions, such as not smoking. Contact a midwife or health care provider early in pregnancy and follow a healthy diet and lifestyle.
Put your baby to sleep on his or her back. Place your baby to sleep resting on his or her back, rather than on the stomach or side. This is not necessary when your baby's awake or able to roll over both ways without your help. By the time your baby has learned to roll over, the risk of SIDS has decreased. Children who are unaccustomed to sleeping on their stomachs and are then placed on their stomachs for sleep may be at an even higher risk for SIDS. Unless your health professional or midwife advises otherwise, do not put your baby to sleep on his or her side or stomach.
Be sure your baby is placed to sleep on his or her back when staying with relatives or at child care. If your baby is used to sleeping on his or her back, it's especially important to avoid switching to the stomach position. Do not assume that others will place your baby to sleep in the correct position. Be sure to let them know what you want for your infant. Explain in detail on the first day of day care (or before) what you expect your child care providers or babysitters to do. Do not assume that they know guidelines for preventing SIDS. Twenty percent of SIDS deaths occur in day care settings, which is two to three times the number one might otherwise expect.
Do not smoke. A smoke-free environment is especially important during pregnancy and in your baby's first year of life. Infants whose mothers smoke during and after pregnancy are much more likely to die of SIDS than are infants of nonsmoking mothers. Also, do not allow anyone to smoke around your baby. Babies exposed to smoke have more colds and other upper respiratory infections than babies in nonsmoking households. If you smoke, do not sleep with your baby. Smoke clings to skin and clothing, exposing your baby to even more potentially harmful substances.
Do not drink alcohol, use medications that make you sleep very soundly (sedatives), or use illegal drugs before sharing a bed with a baby.
Select bedding carefully. Use a firm mattress, rather than a water bed or beanbag. Bumper pads should be very firm if they are used at all. They usually are not needed. Avoid placing your baby on thick, fluffy padding, such as lambskin or a thick quilt. These may interfere with breathing if your baby's face presses against them. For the same reason, do not leave fluffy toys or stuffed animals in your infant's crib. Keep the crib free of objects - blankets, comforters, stuffed toys, pillows - that a baby can pull over his or her head. If a blanket or quilt is needed for warmth, tuck it into the bottom of the crib so that it does not reach higher than the baby's chest.
Moderate room temperature. Keep the temperature in your baby's room at a level that is comfortable for you, not warmer than normal. If your baby is sweating around the neck or face or tossing and turning, it probably means he or she is too warm or has a fever or illness. When this happens, use fewer covers - not more. To keep your baby warm, try a sleep sack or other sleep clothing that does not require additional covers. If you choose to use a blanket, make sure it is lightweight. Tuck the blanket securely at the foot of the crib, with just enough length to cover your baby's shoulders. Then place your baby in the crib, near the foot, covered loosely with the blanket.
Place your baby to sleep in a crib or bassinet - not in your bed. Adult beds are not safe for infants. A baby can become trapped and suffocate between the headboard slats, the space between the mattress and the bed frame, or the space between the mattress and the wall. A baby can also suffocate if a sleeping parent accidentally rolls over and covers the baby's nose and mouth.
If you co-sleep with your baby, take precautions. Precautions for sharing a bed with an infant Bed sharing (also called co-sleeping or the family bed) is common in some cultures, and is becoming more frequent in the United States. This arrangement can make breast-feeding easier and help the mother rest. However, there is controversy about whether bed sharing decreases or increases the risk of sudden infant death syndrome (SIDS). Other safety issues, such as accidental entrapment or suffocation, may be more likely to occur in an adult bed.
The following recommendations can make bed sharing safer:
- Do not sleep with your baby if you smoke.
- Make sure the mattress is firm. Unlike cribs, adult mattresses are not designed with a baby's safety in mind. Never use a water bed or any other sleeping surface that is not firm and smooth. Do not sleep with a baby on a sofa or chair. Keep the baby on his or her back.
- Do not drink alcohol, use medications that make you sleep very soundly (sedatives), or use illegal drugs before sharing a bed with a baby.
- Do not allow comforters, pillows, or other soft bedding under the baby or near the baby's face.
- Do not place the bed next to a wall or other furniture, where a baby could slip between the mattress and the wall (or furniture) and become trapped. Make sure the mattress fits snugly against the headboard or the wall at the head of the bed, with no room for the baby to become trapped between the mattress and anything else.
- Prevent the baby from falling from the bed by placing the baby between two adults or by using some firm barrier that fits snugly to the bedside (such as a bed rail approved for this purpose). Avoid any barrier that could allow the baby's face to become wedged in a corner without air circulating around it. Do not use pillows as barriers to prevent the baby from falling from the bed.
- Do not allow anyone other than parents (no other adults or children, including siblings) to sleep with the baby.
As an alternative to bed sharing, parents can try placing the baby's crib near their bed, or use a crib designed for co-sleeping.
Keep your baby close by. Consider keeping your baby's crib or bassinet in your bedroom at first. Infants who sleep in the same room as their mothers have a lower risk of SIDS.
Breastfeed your baby if possible. Breastfeeding, when combined with other preventive recommendations have been found to reduce the risk of SIDS.
Offer a pacifier. Sucking on a pacifier at naptime and bedtime may reduce the risk of SIDS. One caveat - if you are breast-feeding, wait to offer a pacifier until your baby is 1 month old and you have settled into a comfortable nursing routine. If your baby is not interested in the pacifier, try again later. Do not force the issue. If the pacifier falls out of your baby's mouth while he or she is sleeping, do not pop it back in.
Monitoring. Some parents feel more secure when their newborn's heart rate and breathing are monitored electronically. Unfortunately, monitoring is unlikely to prevent SIDS deaths. Positioning devices are not effective either - or even proved safe.
Because a baby's head is still soft and pliable, some newborns placed to sleep on their backs develop a flattening of the back of the head (positional plagiocephaly). In most cases, the flattening is harmless and easily treated. If caught early enough, simply changing the position of your baby's head will cause the flattening to disappear. At other times, your baby may wear an open-topped helmet to help restore a normal head shape.
But you can prevent flattening from occurring in the first place. Hold your baby when he or she is awake. With close supervision, place your baby on his or her tummy to play. When you place your baby on his or her back to sleep, alternate the direction your baby's head faces. It also may help to change the position of the crib or the location of interesting objects, such as mobiles. That way, your baby will not consistently look in one direction. Once your baby is old enough to sit up, head flattening becomes less of a concern.
EXAMS & TESTS
No diagnostic exam or test can predict whether a baby is likely to die of sudden infant death syndrome (SIDS). Early detection is not possible at this time, even for those who are suspected of having an increased risk. Hopefully, this may change when the cause(s) of SIDS are found by researchers at some future date.
Machines called apnea monitors have been used on some babies believed to be at high risk for SIDS. These machines sound an alarm when they detect a lapse in breathing. However, monitoring a baby's breathing while asleep has not been shown to prevent SIDS.
A thorough investigation is conducted after every suspected SIDS incident. The baby's funeral can be held before the report is complete. Exams and tests related to the investigation include:
- An autopsy performed by a medical examiner (preferably one experienced in identifying diseases and causes of death in babies). This may include X-rays, blood tests, and tissue cultures to rule out other causes of death.
- Questions regarding the parents' and the child's medical histories.
- A careful examination of where the baby died.
There is no treatment for sudden infant death syndrome (SIDS). A baby's death from SIDS cannot be predicted or prevented. However, you can take precautions that may reduce the chance that your baby might die of SIDS. The single most important thing you can do is place your baby to sleep on his or her back.
Be wary of products that are marketed to help prevent SIDS, such as ventilated mattresses that claim to reduce re-breathing. No mattress or other product has been proven to decrease the risk of SIDS. The American Academy of Pediatrics (AAP) does not advise the use of any product to reduce re-breathing or help prevent SIDS.
NUMBERS OF BABIES THAT DIE FROM SIDS
From year to year, the number of SIDS deaths tends to remain constant despite fluctuations in the overall number of infant deaths. The National Center for Health Statistics (NCHS) reported that, in 1988 in the United States, 5,476 infants under 1 year of age died from SIDS; in 1989, the number of SIDS deaths was 5,634 (NCHS, 1990, 1992). However, other sources estimate that the number of SIDS deaths in this country each year may actually be closer to 7,000 (Goyco and Beckerman, 1990). The larger estimate represents additional cases that are unreported or under reported (i.e., cases that should have been reported as SIDS but were not).
When considering the overall number of live births each year, SIDS remains the leading cause of death in the United States among infants between 1 month and 1 year of age and second only to congenital anomalies as the leading overall cause of death for all infants less than 1 year of age.
PROFESSIONAL SIDS POST-MORTEM DIAGNOSIS
Often the cause of an infant death can be determined only through a process of collecting information, conducting sometimes complex forensic tests and procedures, and talking with parents and health care providers. When a death is sudden and unexplained, investigators, including medical examiners and coroners, use the special expertise of forensic medicine (application of medical knowledge to legal issues). SIDS is no exception.
Health professionals make use of three avenues of investigation in determining a SIDS death:
(1) The autopsy.
(2) Death scene investigation.
(3) Review of victim and family case history.
The autopsy provides anatomical evidence through microscopic examination of tissue samples and vital organs. An autopsy is important because SIDS is a diagnosis of exclusion. A definitive diagnosis cannot be made without a thorough postmortem examination that fails to point to any other possible cause of death. If possible, obtain a professional familiar with SIDS to do the autopsy. Also, if a cause of SIDS is ever to be uncovered, scientists will most likely detect that cause through evidence gathered from a thorough pathological examination.
A THOROUGH DEATH SCENE INVESTIGATION
A thorough death scene investigation involves interviewing the parents, other caregivers, and family members; collecting items from the death scene; and evaluating that information. Although painful for the family, a detailed scene investigation may shed light on the cause, sometimes revealing a recognizable and possibly preventable cause of death.
REVIEW OF THE VICTIM & FAMILY CASE HISTORY
A comprehensive history of the infant and family is especially critical to determine a SIDS death. Often, a careful review of documented and anecdotal information about the victim's or family's history of previous illnesses, accidents, or behaviors may further corroborate what is detected in the autopsy or death scene investigation.
Investigators should be sensitive and understand that the family may view this process as an intrusion, even a violation of their grief. It should be noted that, although stressful, a careful investigation that reveals no preventable cause of death may actually be a means of giving solace to a grieving family.
WHAT SIDS IS & WHAT SIDS IS NOT
- The major cause of death in infants from 1 month to 1 year of age, with most deaths occurring between 2 and 4 months.
- Sudden and silent - the infant was seemingly healthy.
- Currently, unpredictable and unpreventable.
- A death that occurs quickly, often associated with sleep and with no signs of suffering.
- Determined only after an autopsy, an examination of the death scene, and a review of the clinical history.
- Designated as a diagnosis of exclusion.
- A recognized medical disorder listed in the International Classification of Diseases, 9th Revision (ICD-9).
- An infant death that leaves unanswered questions, causing intense grief for parents and families.
SIDS IS NOT:
- Caused by vomiting and choking, or minor illnesses such as colds or infections.
- Caused by the diphtheria, pertussis, tetanus (DPT) vaccines, or other immunizations.
- Child abuse.
- The cause of every unexpected infant death.
Any sudden, unexpected death threatens one's sense of safety and security. We are forced to confront our own mortality (Corr, 1991). This is particularly true in a sudden infant death. Quite simply, babies are not supposed to die. Because the death of an infant is a disruption of the natural order, it is traumatic for parents, family, and friends. The lack of a discernible cause, the suddenness of the tragedy, and the involvement of the legal system make a SIDS death especially difficult, leaving a great sense of loss and a need for understanding.
Facing the death of a child can be overwhelming. Parents are often torn by guilt as well as grief. But SIDS can occur no matter how much you love and protect your baby. Right now, SIDS remains a mystery.
At this time, the emotional support of others is especially important. You may find it comforting to talk to other SIDS parents. If so, your health care provider or midwife may be able to recommend a support group in your area, or you can visit an online SIDS chat room. But support groups are not for everyone. For some people, talking to a trusted friend or counselor may be more helpful.
If you can, keep an open line of communication with friends and family about how you are feeling. People want to help but sometimes may not know how to approach you. Parents, especially, need to be as open as possible with one another. Losing a child can put a terrible strain on a marriage. Counseling may help some couples understand and express their feelings.
Remember: SIDS is rare. Do not let your fear of SIDS keep you from enjoying your baby.
DEALING WITH GRIEF
Grief is your emotional reaction to a significant loss. The words sorrow and heartache are often used to describe feelings of grief. Whether you lose a beloved person, animal, place, or object, or a valued way of life (such as your job, marriage, or good health), some level of grief will naturally follow.
Losing a baby to SIDS is a tremendously painful experience. It can take months or years before you begin to feel as if your life is getting back to normal. Everyone in your household will have his or her own unique way of grieving for the lost baby. These different ways of coping with death can strain a marriage and a family. Some aspects of your family's grief may relate specifically to a SIDS death. For example, along with grief, family members may be struggling with feelings of guilt. Support from family, friends, and possibly health professionals during this process is very important for everyone.
Grieving after the loss of a loved one is also known as bereavement. Grieving is a very personal experience. There is no "normal and expected" period of time for grieving. Some people adjust to a new life within several weeks or months. Others take a year or more, particularly when their daily life has been radically changed or their loss was traumatic and unexpected. How you express grief is influenced in part by the cultural, religious and social rules of your community.
Grief is expressed physically, emotionally, socially, and spiritually.
- Physical expressions of grief often include crying and sighing, headaches, loss of appetite, difficulty sleeping, weakness, fatigue, feelings of heaviness, aches, pains, and other stress-related ailments.
- Emotional expressions of grief include feelings of sadness and yearning. However, feelings of worry, anxiety, frustration, anger, or guilt are also normal.
- Social expressions of grief may include feeling detached from others, isolating yourself from social contact, and behaving in ways that are not normal for you.
- Spiritual expressions of grief may include questioning the reason for your loss, the purpose of pain and suffering, the purpose of life, and the meaning of death. After a death, your grieving process is influenced by how you view death.
THE 5 STAGES OF GRIEF
(Coping With Trauma. Death need not be involved.)
As an example, apply the 5 stages to a traumatic event most all of us have experienced: The Dead Battery! You are going to be late to work so you rush out to your car, place the key in the ignition and turn it on. You hear nothing but a grind; the battery is dead.
DENIAL --- What's the first thing you do? You try to start it again! And again. You may check to make sure the radio, heater, lights, etc. are off and then..., try again.
ANGER --- "%$@^##& car!", "I should have junked you years ago." Did you slam your hand on the steering wheel? I have. "I should just leave you out in the rain and let you rust."
BARGAINING --- (realizing that you are going to be late for work)..., "Oh please car, if you will just start one more time I promise I will buy you a brand new battery, get a tune up, new tires, belts and hoses, and keep you in perfect working condition.
DEPRESSION --- "Oh God, what am I going to do. I am going to be late for work. I give up. My job is at risk and I do not really care any more. What is the use".
ACCEPTANCE --- "Ok. It is dead. Guess I had better call the Auto Club or find another way to work. Time to get on with my day; I will deal with this later."
This is not a trivial example. In fact, we all go through this process numerous times a day. A dead battery, the loss of a parking space, a wrong number, the loss of a pet, a job, a move to another city, an overdrawn bank account, etc. Things to remember are:
Any Change Of Circumstance can cause us to go through this process.
We do not have to go through the stages in sequence. We can skip a stage or go through two or three simultaneously.
We can go through them in different time phases. The dead battery could take maybe 5 to 10 minutes, the loss of a parking space 5 to 10 seconds. A traumatic event which involves the Criminal Justice System can take years.
The intensity and duration of the reaction depends on how significant the change-produced loss is perceived.
Grieving only begins where the 5 Stages of "Grief" leave off. Grief professionals often use the concept of "Grief Work" to help the bereaved through grief resolution. One common definition of Grief Work is summarized by the acronym TEAR:
T = To accept the reality of the loss.This is Grief Work. It begins when the honeymoon period is over, the friends have stopped calling, everyone thinks you should be over it, the court case is resolved, "closure" has been effected, and everything is supposed to be back to normal. It is at this point that real grieving begins.
E = Experience the pain of the loss.
A = Adjust to the new environment without the lost object.
R = Reinvest in the new reality.
Notice that the first step of Grief Work is ACCEPTANCE, the last stage of the 5 Stages of Grief. Let's throw out the 5 stages of grief and replace it with a greater understanding of Grief Recognition and Resolution.
MAJOR STEPS IN GRIEVING:
1. Becoming aware of the loss AND accepting the loss. During this time you may feel numb and seem distracted. You may search or yearn for your lost baby. Funerals and other rituals and events during this time may help you to accept the reality of your loss. During this time, you may need to talk to your health care provider about whether or short-term prescription sedative medication can help you. Health professionals disagree about the usefulness of medications for people who are grieving and feel that giving medications for anxiety or sleep may hinder the ability to grieve. Counseling may necessary if you are unable to function. A grief counselor, bereavement support group, or both may be required.
2. Feelings and expressing grief. Your way of feeling and expressing grief is unique to you and the nature of your loss. You may find that you are irritable and restless, are quieter than usual, or need to be distant from or close to others, or that you are not the same person you were before the loss. Do not be surprised if you experience conflicting feelings while grieving. The grieving process does not happen in a step-by-step or orderly fashion. It is usually unpredictable, with sad thoughts and feelings coming and going, like a roller coaster ride. After the early days of grieving you may sense a lifting of numbness and sadness and experience a few days without fears, then for no apparent reason, the intense grief may strike again. While grieving may make you want to isolate yourself from others and hold it all in, it is important that you find some way of expressing your grief. Use whatever mode of expression comes to mind - talking, writing, creating art or music, or being physically active are all ways of expressing grief. Spirituality often enters into the grieving process. You may find yourself looking for or questioning the higher purpose of a loss. While you may gain comfort from your spiritual or religious beliefs, you might also be moved to doubt your beliefs in the face of a traumatic or seeming senseless loss.
3. Adjusting to a loss. It can take two or more years to go through a grieving process. Be prepared for holidays, birthdays, and special events, which typically revive feelings of grief. This is a slow process of recovery from a crisis of attachment where your sense of self and security is disrupted. As you adjust to your loss, your goal is to develop or strengthen connections with other people, places, or activities. These new parts of your life are not meant to replace what you have lost. Instead they serve to support you as you begin to start a new phase of your life.
4. Starting a new phase in your life.
Trusted health professionals can help you after your baby's death. Be aware that your baby's death also can affect your health professional. He or she may recommend other trained professionals to give you the needed support. If you feel the response from your health professional is inadequate, seek help somewhere else. For instance:
Join a grief support group. Ask your health professional if one specifically for parents who have lost babies to SIDS is available in your area.
Visit a mental health professional (psychiatrist, psychologist, licensed professional counselor). Many families benefit from group counseling to help them deal with the tensions that arise after the loss of a baby. If you suffer from a history of depression, mental illness or instability, or anxiety, it is important that you contact someone that can help you to get through this process. For chronic grief or if you or someone you know exhibits suicidal behavior, call 911 or other emergency services immediately. Chronic grief can cause ongoing complications. If you find that a loss has caused ongoing complications, such as depression, prolonged anxiety, post-traumatic stress disorder (PTSD), or severe grief for more than 6 months (traumatic grief), see your health care provider and grief counselor for treatment. Chronic medical conditions can be made worse by the emotional and physical stress of grief. See your medical health care provider immediately if this occurs.
Talk with a close family member, friend, or clergy member.
Finally, give yourself time to grieve. Do not worry if you find yourself crying unexpectedly, if holidays and other celebratory times are especially difficult, or if you are tired and drained much of the time. This is normal. You are dealing with a devastating loss. Healing takes time.
If you or someone you know develops complications of grief such as disturbing or suicidal thoughts, depression, or anxiety, get help.
Call 9-1-1 or other emergency services if:
- You think you cannot stop yourself from harming or killing yourself.
- You hear voices that frighten you, especially if the voices tell you to hurt yourself or other people.
- Someone who is grieving tries to harm himself or herself or someone else.
- Someone who is grieving threatens to hurt someone else or makes threats of suicide.
FOR ADDITIONAL INFORMATION ON SIDS, CONTACT:
American SIDS Institute
2480 Windy Hill Road, Suite 380
Marietta, GA 30067
(770) 612-1030 (within GA)
Provides research, clinical services, and family support services.
Association of SIDS and Infant Mortality Programs
Massachusetts Center for Sudden Infant Death Syndrome
Boston Medical Center
One Boston Medical Center Place
(617) 414-7437 (24 hour hotline)
(800) 641-7437 (In MA & RI)
(617) 414-5555 (fax)
National Sudden Infant Death Syndrome Resource Center (NSRC)
2070 Chain Bridge Road, Suite 450
Vienna, VA 22182
Toll Free: 1-866-866-7437
(703) 821-2098 (fax)
The National Sudden Infant Death Syndrome Resource Center (NSRC) provides SIDS-related products and services. Consumer and professional educational materials, including an information sheet listing selected books on SIDS, are provided online. Annotated bibliographies on SIDS and related topics from the NSRC's databases are also available. This site also provides information on risk reduction, grief, and bereavement as well as links to reference and referral services and medical research.
Southwest SIDS Research Institute, Inc.
Brazosport Memorial Hospital
100 Medical Drive
Lake Jackson, TX 77566
(409) 297-6905 (fax)
Sudden Infant Death Syndrome Alliance
1314 Bedford Avenue, Suite 210
Baltimore, MD 21208
(410) 653-8709 (fax)
Back to Sleep Campaign
Phone: 1-800-505-CRIB (1-800-505-2742)
Web Address: http://www.nichd.nih.gov/sids/
For information on sleep position and SIDS risk reduction, call the "Back to Sleep" campaign line. The "Back to Sleep" campaign is cosponsored by the American Academy of Pediatrics, U.S. Public Health Service, SIDS Alliance, and Association of SIDS and Infant Mortality Programs.
First Candle/Sudden Infant Death Syndrome Alliance (SIDS Alliance)
1314 Bedford Avenue
Baltimore, MD 21208
Toll Free: 1-800-221-7437
Phone: (410) 653-8226
Fax: (410) 653-8709
Web Address: www.sidsalliance.org
Formerly known as the National Sudden Infant Death Syndrome Foundation (National SIDS Foundation), First Candle/SIDS Alliance provides publications about SIDS, grieving, and related topics for parents, nurses, and other groups.
HELPFUL ARTICLES ABOUT SIDS:
Fighting VBAC-lash: critiquing current research - Pregnancy, Birth & Midwifery - Vaginal Birth After Cesarean by Jill MacCorkie, Jan-Feb, 2002, Mothering Magazine. This article is primarily about research on cesarean deliveries and complications associated with cesareans including prematurity, respiratory distress syndrome (RDS) and substantial increases noted for deaths due to asphyxia, sudden infant death syndrome, infection, and external causes.
Still Births, Sudden Infant Deaths, and Long-QT Syndrome by Peter J. Schwartz, M.D.
Sleeping With SIDS By Dr. Greene
Corr, C.A., Fuller, H., Barnickol, C.A., and Corr, D.M. (Eds). Sudden Infant Death Syndrome: Who Can Help and How. New York: Springer Publishing Co., 1991.
Goyco, P.G., and Beckerman, R.C. "Sudden Infant Death Syndrome." Current Problems in Pediatrics 20(6):299-346, June 1990.
National Center for Health Statistics. "Advanced Mortality Statistics for 1989." Monthly Vital Statistics Report, Vol. 40, No. 8, Supp. 2, January 7, 1992, p. 44.
National Center for Health Statistics. "Advance Report of Final Mortality Statistics, 1988." Monthly Vital Statistics Report, Vol. 39, No. 7, Supp. 1990, p. 33.
Willinger, M., James, L.S., and Catz, C. "Defining the Sudden Infant Death Syndrome (SIDS): Deliberations of an Expert Panel Convened by the National Institute of Child Health and Human Development." Pediatric Pathology 11:677-684, 1991.
Information Sheet #1 was originally published in 1993.
Part of this information is from a publication produced by the National Sudden Infant Death Syndrome Resource Center, 2070 Chain Bridge Road, Suite 450, Vienna, VA 22182, (703) 821-8955, (operated by Circle Solutions, Inc.). The Resource Center is sponsored by the U.S. Department of Health and Human Services, Public Health Service, Health Resources and Services Administration, Maternal and Child Health Bureau. This publication is not copyrighted; it may be reproduced in whole or in part without permission. However, in accordance with accepted publishing standards, it is requested that proper credit be given to the source(s). The views in this publication do not necessarily reflect the views of the sponsoring agency.
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