Most parents who experience the death of a child describe the pain that follows as the most intense they have ever experienced. Many parents wonder if they will be able to tolerate the pain, to survive it, and to be able to feel that life has meaning again. The intense pain that SIDS/SUID parents experience may be eased somewhat if they know what has helped other families overcome a similar grief.

Emotions that may be experienced include sadness, guilt, anger, and fear. Sadness is a normal emotion felt as a result of your loss. Parents may blame themselves for something they did or neglected to do. "If only" or "what if" becomes familiar phrases. Parents may feel angry at themselves, their spouse, the childcare provider, the physician, or their baby for having died. Parents might find themselves angry at God, and religious beliefs may be questioned. Many parents experience an overall sense of fear that something else horrible is going to happen. Grieving parents often fear that they are "going crazy." These are all normal reactions.

After the initial shock and numbness of the first few days begin to wear off, parents find that they are left with prolonged depression. There are "ups-and-downs" that can be brought on by unsolicited mail giveaways of baby products; thoughtless or innocent remarks from persons who do not understand SIDS/SUID; or by the parents, remembering that it is the same day of the week or date that the baby died. At these low points it is often very helpful for them to talk to another SIDS/SUID parent. For some families, support may be obtained from friends and relatives, the clergy, physicians, counselors, or other health professionals who have helped others in similar situations.

Bereaved parents find it difficult to concentrate for any length of time, making it hard to read, write or make decisions. Some people experience sensations of dizziness or pressure in the head. These feelings are common in grief and do not indicate that the person is losing mental balance.

Sleep is difficult, leaving parents fatigued. If they have a family to care for or a job to get back to, they may need temporary assistance from their doctor in the form of mild medication to help them rest. Even with sleep, the feeling of exhaustion may persist.

Those in grief often experience muscular problems or other physical symptoms centering around the heart or stomach. Often they have no appetite, and they eat only because they know they must. They feel "tied in knots" inside. Mothers nearly always say that their arms "ache" to hold the baby.

SIDS/SUID parents may have an irresistible urge to get away, a fear or dread of being alone, or unreasonable fears of danger. If they have other children, parents fear for their safety, yet at the same time they may be afraid of or shun the responsibility of caring for them. Even with this extreme concern about their children, parents may be irritated or impatient with the children's behavior.

Bereaved parents rely heavily on family and friends, but at the same time they may resent that help and even feel guilty about their feelings. The situation is made even more difficult when the community around them does not understand SIDS/SUID. Friends and relatives trying to help seem to say the wrong things or appear not to understand.

Grief reactions of parents may be different

Mothers and fathers express their grief in different ways. This fact is not always understood. For instance, mothers generally need to "talk out" their grief, while fathers tend to grieve in silence. Parents working outside the home are diverted by their work, while stay at home parents are surrounded by constant reminders. Fathers may find it more difficult to ask for help and support from others and may seek diversions through their work; they may even take on extra work to escape "thinking about it all the time."

Often the death of the baby is the first grief situation either parent has experienced. Grief is so intense that they find themselves struggling for ways to relate to each other as well as to their friends and relatives. In order to prevent misunderstanding, most families find it helpful to maintain an atmosphere in which their feelings can be discussed openly, even though that is difficult.

The Iowa SIDS Foundation serves the entire state of Iowa.  Grief packets and peer contact support is available to Iowa parents experiencing a SIDS or SUID death.  Contact us for more information.