Sudden infant death syndrome (SIDS) may be prevented by instructing parents or persons in a similar position not to let the infant sleep in the prone position and not to clothe the infant too warmly.
The cause of a sudden death in infancy should be investigated.
The family is supported and provided first information on SIDS.
Also check local medical guidelines and legal requirements.
Definition
The definition of SIDS includes every sudden unexpected infant death that remains unexplained after post-mortem examinations.
Diagnosis
It is necessary to start looking for the causes leading to the need of resuscitation already during the procedure.
Attention is paid to the following:
State of health of the infant
Events before death
Possible illnesses and symptoms
Time, when the infant was last seen alive
The place where the infant was found lifeless
Possible vomit in bed or on clothes.
In addition to detailed background information and physical examination, the following laboratory tests are performed:
Complete blood cell count
Blood glucose
Plasma sodium, potassium and calcium
Plasma urea nitrogen
Blood culture
Viral antibodies
Urine analysis
Bacterial and viral isolation from the pharynx, nasopharynx and stool.
With these examinations it is possible to
recognize or to raise suspicion of several diseases (for example sepsis, hypoglycaemia, electrolyte disturbances) which may cause sudden death.
investigate factors contributing to death or triggering factors (for example mild respiratory tract infection or mild diarrhoea) and their severity.
Microbial specimens taken at autopsy are almost always contaminated. For this reason, samples taken immediately after death are more reliable. This also applies to blood glucose and electrolyte levels, where post-mortem changes make interpretation more difficult.
The physician in charge informs the police immediately about a sudden death. The police decides whether a forensic autopsy is necessary and asks for a referral if needed.
In case of suspected trauma or assault (bruises, abrasions, possible old or recent fractures, etc.), a full body X-ray is necessary.
If SIDS is suspected, it is necessary to give or arrange immediate support to the family as described below. Part of this information may also be applicable in cases of sudden death due to various known causes.
Immediate support of the family
Although the infant's life cannot be saved, the family needs support in this dramatic situation and support should start immediately. Drugs do not substitute for information.
The parents should be offered the possibility to stay with the dead infant as long as they want. This helps them to accept the reality of death and facilitates the mourning process and thus prevents prolonged grief disorder.
In the shock stage of the mourning process, the mere presence of a physicianor a healthcare professional who knows about the SIDS makes the situation easier for the parents.
A discussion including preferably both parents and definitely all siblings is important. If talking with the siblings is not possible, it is necessary to guide parents or those in a similar position to tell the siblings about the death, in a manner suitable to their age. The first given information should be simple and focused on basic things, because the parents' and possible siblings' ability to understand is limited in the shock stage. The family should also be told about grief work and the reactions associated with it, taking into account the possible siblings' age-related understanding of grief work.
It is necessary to make it clear to the parents that the examination of a sudden death also includes a police investigation which is not done because the parents are suspected, but because according to the law, all sudden deaths require detailed investigations and autopsy. Investigations also serve as legal protection for the persons who were present at the time of the death. Absolute refusal of autopsy may mean e.g. that the parents have not yet accepted the death.
If the sudden infant death syndrome is suspected, the parents should be told especially the following:
After the neonatal period, SIDS is the most common single cause of death in infants.
Globally, there were about 30 000 cases of SIDS in 2021, corresponding to a mortality rate of about 24 per 100 000 infants http://pmc.ncbi.nlm.nih.gov/articles/PMC12234550/. Significant regional variation exists.
The cause(s) of SIDS is (are) unknown despite the numerous risk factors.
SIDS is not predictable.
SIDS occurs during sleep. It is painless and silent.
Suffocation on bed clothing or vomit is usually not the cause of death although stomach contents may be seen around the infant.
Mild illness, for instance rhinitis, may preceed death; it is not a cause of death, however.
SIDS is not contagious. It is rare after six months of life, and thus it does not threaten other children in the family.
Recurrence in the family is rare.
SIDS is not about neglect or a death due to negligence.
Check the patient information resources and organizations providing peer support available in your country/district and have handouts ready for this emergency.
Continuation of the family's treatment
The family is seen again on the following day after death. This meeting should also include sisters and brothers of the dead infant.
The next meeting with the family takes place latest after the forensic pathology investigations.
Sometimes the parents are worried because there has been talk of SIDS, although the death certificate gives another diagnosis, such as suffocation, aspiration of stomach contents, mild pneumonia etc. In these situations, a consultation with the forensic pathologist may be necessary.
The next meetings are organized after the autopsy results are available and thereafter 3-4 times in increasing intervals during the first year after the death.In this way it is possible to start treatment in time if the family needs more support or the family has difficulties in coping.
It is preferable that whenever possible the physician in charge of the acute situation continues to see the family. If this is not possible, arrangements should be made with a social worker, family physician or a public health nurse to maintain continuity of care for the family with the same professional. If needed, a physician should explain once more the autopsy results.
During follow-up visits, the parents often again ask questions discussed earlier. This does not necessarily mean that the information has been unclear or inadequate, but it reflects the limited ability to understand given information in the shock stage of mourning.
One indication of the individual and broad normal course of grief (= positive progression of grieving process) is that the parents start to use the past tense when they talk about the infant and to remember also happy events. The most difficult times are special days related to the deceased child (e.g. birthday). The mourning process is usually completed in a year from the death.
An unexplained, unexpected sudden death, in particular, can be associated with difficulties in the grieving process. Alarming signs indicating that the mourning process is not successful are repeated denial of death, failure to come to the funeral or to visit the grave, strong feelings of guilt, or blaming the spouse, caretaker or even sisters or brothers. Other family difficulties after death, inability to cope with previous responsibilities, difficulties reflected by children etc. may be pre-existing problems triggered by the death, and it is vital to address and treat them.
Prolonged grief disorder is a broad entity of grief work difficulty. It is only in ICD-11 that the diagnostic criteria for prolonged grief disorder are set out. These include e.g. intense grief-associated feelings that interfere with functional ability in several areas of life for more than 6 months (e.g. persistent longing for the child and intense painful thoughts and experiences related to the child). In the case of prolonged grief disorder, consulting a psychiatrist is essential to identify and treat symptoms associated with the disorder and any other co-occurring disorders.
Parents should not be told to have a new child quickly. They decide it themselves.
SIDS has an inevitable effect on the dead infant's sisters and brothers. The recently adoted role of big brother or sister ends abruptly, and the child is unable to understand the cause(s) or meaning of the event. The child can seem indifferent, deny the death or think it is because of something he or she has done or failed to do. If the child does not receive age-appropriate and developmentally appropriate information about the event, he or she may develop psychosomatic symptoms or behavioural disturbances.
The ability of children to understand death varies with age; children under 5 do not understand the irreversibility of death. Only children over 10 years old understand the finality of death. Often a 5-10-year-old child has the idea that death often has a cause, even that someone is responsible for the death. It is only after puberty that the grieving process of a child resembles that of an adult in terms of grief work/grief.
It is important to explain to the sisters and brothers that SIDS occurs only in infancy. SIDS is not caused by anybody and the good health of sisters and brothers is emphasized. The death of a sibling should not be kept from a child or even concealed, nor should the intense emotions aroused by grief be belittled. There is no reason to be angry with children for apparent lack of mourning, because this can show that they do not understand the finality of death or that in the family it is not allowed to express grief and the strong emotions associated with it. Sisters and brothers should also be taken to the funeral.
Difficulty in the family's grief work can become manifest as various physical and emotional symptoms in the other children or as the parents' overprotective attitude towards their other children.
It is important to note if a sibling of the deceased infant becomes e.g. a comforter or other responsibility bearer for the parent when the child is seeking support for their own sudden loss.
If these difficulties arise, a psychiatrist or a health care professional specializing in children's grief should be consulted.
There are no diagnostic criteria for prolonged grief disorder in children.