The devastation of Sudden Unexpected Infant Death (SUID) or Sudden Infant Death Syndrome (SIDS) is tragic for families, friends, caregivers, and communities. A sudden, unexplained death can leave more questions than answers and creates a grief that is intense, consuming, complicated, and overwhelming. Additionally, because parents or caregivers do not usually see these deaths as they occur, a thorough investigation is necessary to learn what caused the death. Even after examination and investigation, these deaths may remain unexplained. These unanswered questions and lack of the cause of death can lead to additional heartache for families in this already devastating situation.
What is Sudden Unexplained Infant Death (SUID)?
Sudden unexpected infant death (SUID) is a term used to describe the sudden and unexpected death of a baby less than 1 year old, in which the cause was not obvious before investigation. These deaths often happen during sleep or in the baby’s sleep area. About 3,500 babies in the United States die suddenly and unexpectedly each year. Sudden unexpected infant deaths include sudden infant death syndrome (SIDS), accidental suffocation in a sleeping environment, and other deaths from unknown causes.
Sudden infant death syndrome (SIDS) is the sudden death of an infant under age 1 that cannot be explained after a thorough investigation has been conducted, including a complete autopsy, an examination of the death scene, and a review of the clinical history. About 1,500 babies in the United States die suddenly and unexpectedly from SIDS each year.
Although the SUID/SIDS rate has declined since 1990s, significant racial and ethnic differences continue. SUID/SIDS rates per 100,000 live births for American Indian/Alaska Native (205.8) and non-Hispanic black infants (181.0) were more than twice those of non-Hispanic white infants (85.0). SUID/SIDS rates per 100,000 live births were lowest among Hispanic (52.2) and Asian/Pacific Islander infants (33.5).
Impact on the Family
The death of a child, at any age, is profoundly heartbreaking and its influence can ripple through and disrupt an entire family system. The impact of SUID/SIDS is extensive and can affect many people, including parents, siblings, grandparents, extended family, friends, caregivers, co-workers, the community, and beyond. The impact of this loss can have devastating consequences for a family unit, as families learn to find a new normal.
The sudden death of an infant from SUID/SIDS, can further complicate the grieving process, as families must navigate feelings of shock, loss, and extreme guilt due to the unexpected and frequently unexplained nature of the death. Parents often blame themselves or each other for this tragedy. The questions of “what if” or “what could we have done” torment parents. The additional involvement of the legal system makes a SUID/SIDS death especially difficult. Even after thorough investigation, many parents are left with inconclusive results and lack a definitive cause of death. Families are left with a desire for understanding which may unfortunately never be answered.
Families are encouraged to seek professional help, as necessary, to help guide their family through this tragedy. Families can receive support from trained health professionals, such as grief counselors, mental health providers, or their physician. A gentle reminder that siblings and extended family can benefit from these services, as well. Families can also seek the support of other families who have faced this tragedy through support groups or peer companion groups. Contact with other families can play a role in finding comfort and hope in the hard times ahead.
For those who are grieving the death of a child, physical symptoms of grief are expected and common. These may include heart palpitations or chest pain, shortness of breath, fatigue, sleepiness, loss of appetite increased appetite, stomach pain, nausea, headaches, loss of focus, or withdrawal from social activities. Emotions can include sadness, denial, anger, frustration, anxiety, blame, and guilt.
If your grief gets worse over time instead of better or interferes with your ability to function in daily life, consult a grief counselor or other mental health provider. Unresolved or complicated grief can lead to depression, other mental health problems and other medical conditions. With professional help, however, you can re-establish a sense of control and direction in your life — and return to the path toward healing.
If you feel that the physical symptoms or emotions of grief last for a prolonged period of time, are concerning for you, interfere with life activities, cause friction in relationships, or cause feelings of despair/wanting to hurt yourself, please see a health professional immediately.
Caring for Yourself & Healing After Loss
It is important to remain committed to both your personal health and the well-being of your family. Emotional and physical health is essential to easing the complications of grief and assisting in long-term healing. Physical activity, social support, mental health support, sleep, and nutrition all play a role in healthy grieving. Some examples of this include taking a walk, chatting with a friend, speaking with a counselor or finding a support group, getting enough sleep, eating well, and drinking enough water.
If you have been breastfeeding your baby, you may have a supply of pumped breastmilk on hand. Many families choose to donate their supply of pumped breastmilk to a milk bank. A milk bank is a facility which processes human donor milk for distribution to infants who need it. Milk donation is a very personal choice, and not every mother will want to donate her milk. Some mothers’ have found that donating their milk assists them with the healing process. It can be a way to carry on your child’s legacy.
Please contact the Human Milk Banking Association of America for further information and to find a milk bank near you. Each milk bank may have a different set of requirements. Some milk banks will supply you with a breast pump if you would like to continue to pump and donate your milk. https://www.hmbana.org
If you want to suppress your milk supply, here are a few tips to assist with that process.
The journey towards healing may be different for each person in your family. Everyone grieves in their own way and on their own timeline. Open communication is important to understand and support each other during this difficult time. Be gentle and patient with yourself and each other during this time. Ask friends and family, or your health care professional for help with physical, emotional, or daily needs. If you have medical questions, ask your health care providers for more information.