Losing a Child to Sudden Infant Death Syndrome
Written July 1, 2019
There is no greater loss than the loss of a child. It’s out of order; parents should die first. Yet, these tragic deaths happen more often than we’d like to believe and leave an indelible mark on the worlds of their loved ones.
Sudden death is a contradiction to everything we know to be true; losing a child to sudden death is a disruption in the natural law and order of life. It is a heartbreak like no other. Parental grief is different from other losses—it is intensified, exaggerated, and lengthened. Children are not supposed to die; parents expect to see their children grow and mature, and one day to bury their own parents. Ultimately, parents expect to die and leave their children behind, as this is the natural course of life, our life cycle continuing as it should.
The loss of a child is the loss of innocence, the death of the most vulnerable and dependent. The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection. Grieving parents say that their grief is a lifelong process, a long and painful process by which they try to take and keep some meaning from the loss and life without the child.
After a child’s death, parents must embark on a long, excruciating journey that’s scary and lonely and, unfortunately, a journey that never ends. The hope and desire that healing will come eventually is an intense and persistent hope for grieving parents.
The child who died is considered a gift to the parents and family, and they are forced to give up that gift, “I didn’t LOSE my baby; she was TAKEN from me.” Yet, as parents, we also strive to let our child’s life, no matter how short, be seen as a gift to others. Parents of a child who died of SIDS seek to find ways to continue to love, honor, and value the lives of their children, and to make the child’s presence known and felt in the lives of family and friends, thereby not forgetting that the child existed.
Bereaved parents frequently live their lives more fully and generously due to this painful experience.
What Is Sudden Infant Death Syndrome (SIDS)?
Sudden infant death syndrome (SIDS), also called “crib death” and “cot death,” is the unexplained death, usually during sleep, of a seemingly healthy baby less than a year old. SIDS is sometimes known as crib death because the infants often die in their cribs. Although the cause is unknown, it appears that SIDS might be associated with defects in the portion of an infant’s brain that controls breathing and arousal from sleep.
According to the CDC, in 2016, there were about 3,600 sudden unexpected infant deaths (SUID) in the United States. These deaths occur among infants less than 1-year-old and have no immediately obvious cause.
The three commonly reported types of SUID include:
2. Unknown cause.
3. Accidental suffocation and strangulation in bed.
In 2016, there were about 1,500 deaths due to SIDS, 1,200 deaths due to unknown causes, and about 900 deaths due to accidental suffocation and strangulation in bed.
SIDS is a diagnosis of exclusions, meaning that after a child dies suddenly, and an autopsy performed, the medical examiner is unable to pinpoint the direct cause for the child’s sudden death.
Researchers have discovered some factors that might put babies at extra risk. They’ve also identified measures to take to help protect your child from SIDS. Perhaps the most important is placing your baby on his or her back to sleep.
The impact of Sudden Infant Death Syndrome (SIDS) presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care, and counsel them. SIDS parents must deal with a baby’s death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.
SIDS often occurs at home, forcing parents and sometimes siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory.
In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in child care. They may feel that the baby might not have died if they had been caring for the infant.
SIDS parents, like other child loss parents, are very often plagued by “if only’s” that they cannot resolve. They replay such thoughts as: “If only I hadn’t put the child down for a nap when I did.” “If only I had checked on the baby sooner.” “If only I had not returned to work so soon.” “If only I had taken the baby to the doctor with that slight cold.”
Professionals need to provide parents with reliable information, as well as emotional support in these situations.
SIDS parents, relatives, child care providers, health care professionals, and other adults feel helpless in trying to explain the inexplicable to other young children who may have been present at the time of the baby’s death. It is especially difficult for children to understand why a baby died when the infant didn’t appear to be sick. Also, in some cases, parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
In some SIDS deaths, the autopsy findings may help answer questions. Parents are often anxious to consult with the pathologist after the autopsy. Discussing the autopsy results often helps most parents accept the reality of their infant’s death. The pathologist reviews the autopsy results, explaining in terms the parents can understand how these findings point (or do not point) to a determination of the cause of death. The pathologist should also take the time to answer any questions that arise.
Friends and family members should try to do all they can to show their concern and help the parents in keeping memories of their baby alive. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and remember the child’s birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.
Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents’ excitement over the birth and affirming the child’s existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don’t want to hear them, that others won’t permit them to openly grieve.
The parents of SIDS babies want their child’s short life to matter not only to them, but to their families and friends, to the others in their circle of loved ones, and to the world. “All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child’s life, the family’s attachment to that child is strong and deep and has been present in various ways since the knowledge of conception.
Potential Causes and Risk Factors for SIDS (SUID):
It’s likely that a combination of physical and sleep environmental factors can make an infant more vulnerable to SIDS. Researchers are still looking to pinpoint an exact cause for SIDS, as it is a diagnosis of exclusion, meaning that when an autopsy is performed, no other cause for death can be found, it is called SIDS or SUID (sudden unexplained infant death. Potential risk factors vary from child to child.
Physical factors associated with SIDS include:
Brain defects. Some infants are born with problems that make them more likely to die of SIDS. In many of these babies, the portion of the brain that controls breathing and arousal from sleep hasn’t matured enough to work properly.
Low birth weight. Premature birth or being part of a multiple birth increases the likelihood that a baby’s brain hasn’t matured completely, so he or she has less control over such automatic processes as breathing and heart rate.
Respiratory infection. Many infants who died of SIDS had recently had a cold, which might contribute to breathing problems.
Sleep environmental factors
The items in a baby’s crib and his or her sleeping position can combine with a baby’s physical problems to increase the risk of SIDS. Examples include:
Sleeping on the stomach or side. Babies placed in these positions to sleep might have more difficulty breathing than those placed on their backs.
Sleeping on a soft surface. Lying face down on a fluffy comforter, a soft mattress or a waterbed can block an infant’s airway.
Sharing a bed. While the risk of SIDS is lowered if an infant sleeps in the same room as his or her parents, the risk increases if the baby sleeps in the same bed with parents, siblings or pets.
Overheating. Being too warm while sleeping can increase a baby’s risk of SIDS.
Although sudden infant death syndrome can strike any infant, researchers have identified several factors that might increase a baby’s risk. They include:
Sex. Boys are slightly more likely to die of SIDS.
Age. Infants are most vulnerable between the second and fourth months of life.
Race. For reasons that aren’t well-understood, nonwhite infants are more likely to develop SIDS.
Family history. Babies who’ve had siblings or cousins die of SIDS are at higher risk of SIDS.
Secondhand smoke. Babies who live with smokers have a higher risk of SIDS.
Being premature. Both being born early and having a low birth weight increase your baby’s chances of SIDS.
Maternal risk factors
During pregnancy, the mother also affects her baby’s risk of SIDS, especially if she:
Is younger than 20
Uses drugs or alcohol
Has inadequate prenatal care
Can We Prevent SIDS/Sudden Infant Death Syndrome/SUID?
There’s no guaranteed way to prevent SIDS, but you can help your baby sleep more safely by following these tips:
Back to sleep. Place your baby to sleep on his or her back, rather than on the stomach or side, every time you — or anyone else — put the baby to sleep for the first year of life. This isn’t necessary when your baby’s awake or able to roll over both ways without help,
Don’t assume that others will place your baby to sleep in the correct position — insist on it. Advise sitters and child care providers not to use the stomach position to calm an upset baby.
Keep the crib as bare as possible. Use a firm mattress and avoid placing your baby on thick, fluffy padding, such as lambskin or a thick quilt. Don’t leave pillows, fluffy toys or stuffed animals in the crib. These can interfere with breathing if your baby’s face presses against them.
Don’t overheat your baby. To keep your baby warm, try a sleep sack or other sleep clothing that doesn’t require additional covers. Don’t cover your baby’s head.
Have your baby sleep in your room. Ideally, your baby should sleep in your room with you, but alone in a crib, bassinet or other structure designed for infants, for at least six months, and, if possible, up to a year.
Adult beds aren’t 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.
Breastfeed your baby, if possible. Breastfeeding for at least six months lowers the risk of SIDS.
Don’t use baby monitors and other commercial devices that claim to reduce the risk of SIDS. The American Academy of Pediatrics discourages the use of monitors and other devices because of ineffectiveness and safety issues.
Offer a pacifier. Sucking on a pacifier without a strap or string at naptime and bedtime might reduce the risk of SIDS. One caveat — if you’re breastfeeding, wait to offer a pacifier until your baby is 3 to 4 weeks old and you’ve settled into a nursing routine.
If your baby’s not interested in the pacifier, don’t force it. Try again another day. If the pacifier falls out of your baby’s mouth while he or she is sleeping, don’t pop it back in.
Immunize your baby. There’s no evidence that routine immunizations increase SIDS risk. Some evidence indicates immunizations can help prevent SIDS.
Grieving The Loss of a Child to SIDS:
Grief is a process, not a singular event. Although parents might wish otherwise, grief cannot be bypassed or hurried; it must be allowed to happen. Parents cannot work through the grief and come out the other side the very same person. Grief changes parents. One approach to understanding bereavement, developed by Dr. J.W. Worden (2002), identifies grief not as a succession of phases through which a person passes with little or no control, but as four tasks for the bereaved person:
Accepting the reality of the loss:
When someone dies, there is always a sense that it hasn’t happened. It may seem like a dream or an alternate reality. The first task of grieving is to come full -ace with the reality that the child is dead, that the child is gone and will not return. The opposite of accepting the loss is not believing through some type of denial. Denial usually involves either the facts of the loss, the significance of the loss to the survivor, or the irreversibly of the loss. To accomplish this task, the parent must talk about the dead child and funeral, as well as the circumstances around the death.
Working through the pain of grief:
We must acknowledge and work through the pain of grief or it will manifest itself through some symptoms or atypical behavior. Not everyone experiences the same intensity of pain or feels it in the same way, but it is impossible to lose someone with whom you have been deeply attached without experiencing some level of pain.
The negation of this second task is not to feel. People may avoid feeling pain by using thought stopping procedures or by avoiding reminders of the child. Many emotions such as shock, anger, guilt, and depression may be expressed. The bereaved must allow themselves to indulge in the pain: to feel it and know that one day it will pass. It’s been said that it’s easier to express emotions with someone who knew the child or who can relate to the experience directly.
Adjusting to an environment in which the deceased is missing:
Caring for a child takes an amazing amount of time and energy. Parents and other caregivers once consumed with the constant task of meeting the needs of a baby are suddenly forced into inactivity. What was once responsibility is now gone. During their adaptation to loss, people can work to avoid promoting their own helplessness by gradually reforming schedules and responsibilities. Creating meaningful rituals like making a special memorial, keeping a journal, or writing poetry are helpful components of completing this task.
Emotionally relocating the deceased and moving on with life:
Survivors sometimes believe that if they withdraw their emotional attachment, they are dishonoring the memory of the child. In some cases, parents are frightened by the prospect of having another baby because he or she might also die. For many people, this task is the most difficult one to accomplish. They may get stuck at this point and later realize that their life in some way stopped at the point the loss occurred.
Some bereavement experts note the grieving process includes not only the parent adapting to the loss and returning to functioning in their life, but also includes changing and maintaining their relationship with the infant or child. It is normal for parents to report that they having an on-going relationship with their child through their memories and mental life.
Factors that may interfere with the grief process
Overactivity leading to exhaustion
Use of alcohol or other drugs
Unrealistic promises made to the deceased
Unresolved grief from a previous loss
Resentment of those who try to help
Complicated grief is delayed or unfinished adaptation to loss.
Those who have complicated grief experience a failure to return, over time, to pre-loss levels of functioning, or to the previous state of emotional well-being. Grief may be more difficult in younger parents, women, and persons with limited social support, thus increasing their risk for complicated grief. The grief surrounding a child’s death is unique in its challenges and may necessitate professional counseling from the clergy, grief counselor, family physician, or mental health professional.
Although both mothers and fathers grieve deeply when such a tragedy occurs, they grieve differently. Fathers are expected to be strong and stoic for their partners; to be the “rock” in the family. All too often, fathers are the ones who attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart.
Men are often asked how their wives are doing, but not asked how they are doing. Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned, but many say that such strong emotions are very difficult to contain after their child’s death.
A father’s grief needs to be verbalized and understood by his partner, other family members, professionals, coworkers and friends, and by anyone who will listen. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mindset and allow themselves to grieve as they need to.
Families Needing Extra Support
The tragedy of a child’s death brings profound pain to all affected, and it presents incredibly difficult and unusual problems for all grieving parents.
For some parents, the effects of such a complicated and devastating tragedy can be further compounded when the death occurs in a family already experiencing added stress in their lives, such as substance abuse or domestic violence.
There are some parents for whom there is no “circle of concern” or extended family.
There are also families who choose not to seek out a support network for their own reasons.
It is important to assess each family’s special needs and preferences. Additional resources for families include hospice organizations, local health departments, bereavement support programs, and community or religious leaders or healers. Each family’s cultural beliefs and practices must be honored during the bereavement process.
Types of Non-Traditional Families
When a non-traditional family experiences the death of an infant, the community’s response may be less supportive of that family. It may be necessary to assist the family to seek out support networks that will best address their needs. Examples of a non-traditional family include:
Parents in blended families
Adoptive and foster parents
Gay and lesbian parents
All of these parents and those in traditional families may find their grief unusually complicated. Regardless of the family’s composition, parental experience, coping strategies, and cultural practices are unique for each family.
Helping The Grieving Family
Acknowledge the child’s death by telling the parent(s) of your sadness for them and by expressing love and support and trying to provide comfort.
Allow the parent(s) to express feelings without imposing your views or feelings about what is appropriate behavior. Avoid telling the parent(s) you know just how they feel.
Allow the parent(s) to cry–it is appropriate to cry with them.
Visit and talk with the family about the child who died; ask to see pictures or memories the family may have.
Refer to the child by name.
Extend gestures of concern such as bringing flowers or writing a personal note expressing your feelings, letting the parent(s) know of your sadness for them.
Attend the child’s funeral or memorial service.
Offer to go with the parent(s) to the cemetery in the days and weeks after the funeral, or find other special ways to extend personal or sensitive gestures of concern.
Remember anniversaries and special days.
Donate to a specific memorial in honor of the child.
Make practical and specific suggestions, such as offering to stop by at a convenient time, bringing a meal, purchasing a comforting book, offering to take the other children for a special outing, or treating the parent(s) to something special.
Respect the dynamics of each person’s grief. The often visible expressions of pain and confusion shown by the grieving parent(s) are normal. Grief is an ongoing and demanding process.
Keep in mind that the parent(s) may not be able to ask for help or tell you what they need.
Ways That May Help Parents Heal from the Sudden Loss of a Child
Admitting that their grief is overwhelming, unpredictable, painful, draining, and exhausting—that their grief should not be diminished or ignored.
Allowing themselves to be angry and acknowledging that they are vulnerable, helpless, and feeling disoriented.
Trying to understand that to grieve is to heal and that integrating grief into their lives is a necessity.
Acknowledging the need and desire to talk about the child who died as well as the moments and events that will be missed and never experienced with the child.
Maintaining a belief in the significance of their child’s life, no matter how short.
Creating memorial services and other rituals as ways to commemorate the child’s life.
Deriving support from religious beliefs, a sense of spirituality, or personal faith.
Expressing feelings in journals, poetry, prayers, or other reflective writings or in art, music, or other creative activities.
Trying to be patient and forgiving with themselves and others and refraining from making hasty decisions.
Counting on, confiding in, and trusting those who care, listen, and hear, those who will walk with them, and not be critical of them, those who will try to understand their emotional and physical limitations, while also trying to understand and respect the limitations of their caretakers.
Increasing their physical activity and maintaining a healthful diet.
Volunteering their services to organizations concerned with support for bereaved parents.
Obtaining help from traditional support systems, such as family, friends, professionals or religious groups, undergoing professional counseling, joining a parent support group, or acquiring information on the type of death that occurred as well as about their own grief.
Reassuring themselves and others that they were and still are loving parents.
Letting go of fear and guilt when the time seems right and the grief seems less.
Accepting that they are allowed to feel pleasure and continue their lives, knowing their love for the child transcends death.
When Does The Pain End?
When are you ready to live again?
There is no list of events or anniversaries to check off, and in fact, you’re likely to begin living again before you realize you are doing it. You may catch yourself laughing or pick up a book for recreational reading again. You may start playing lighter, happier music.
When you do make these steps toward living again, you’re likely to feel guilty. “What right have I have to be happy when my child is dead?” And yet something inside feels as though you are being nudged in this positive direction. You may even have the sense that this nudge is from your child or at least a feeling that your child approves of it.
All newly bereaved parents must find ways to get through, not over, their grief—to go on with their lives. Each is forced to continue life’s journey in an individual manner. Many bereaved parents find solace in their religion. Seeking spiritual comfort in a time of grief does not mean repressing the grief.
Many grieving parents also find comfort in rituals. Funerals or memorial services have served many parents as beautiful and meaningful ways of saying goodbye, providing a sense of closure after the child’s death.
For others, ending announcement cards about the baby’s death, writing poems, keeping journals or writing down personal reflections or prayers, or volunteering with a parental bereavement group become ways to remember and honor the child who died.
Grief is a natural response to any loss. Healing for bereaved parents can begin to occur by acknowledging and sharing their grief.
Friends and caregivers who care should grieve and mourn with the parents; and listen. Bereaved parents need to know that their child will be remembered, not just by them but also by family and friends. They need to have the child acknowledged and referred to by name. They want that child’s life to matter. They do not want to forget and they don’t want others to forget.
What has happened to these parents has changed their lives; they will never see life the same way; they will never be the same people. As they attempt to move forward, bereaved parents realize they are survivors and have been strong enough to endure what is probably life’s harshest blow. By addressing their grief and coping with it, they struggle to continue this journey while making this devastating loss part of their own personal history, a part of their life’s story, a part of their very being.
Eventually, time will cease to stand still for parents. Painful and terrible moments will still occur—striking, poignant, but in some ways comforting reminders of the child who died. There will also be regrets for experiences that were never shared. But at some unknown and even unexpected point, parents will come to realize that there can be good moments, even happy and beautiful moments, and it will not seem impossible or wrong to smile or laugh, but it will seem right and beautiful and a fitting way to honor and remember the child who died.
One day, bereaved parents may come to be surprised by joy.
But in time…nature takes care of it; the waves of pain lose intensity a little and come less frequently. Then friends and relatives say the parents are getting over it, and that time heals all wounds. The parents themselves say that as the pain lessens, they begin to have the energy for people and things outside themselves…This is a decision parents say they must make to live as well as they can in their new world. They can become to be happy, but never as happy. Their perspective on this and everything has changed.
Their child’s death is the reason for this and is a measure of the depth and breadth of the bond between parent and child.