Cot death, SIDS (Sudden infant death syndrome) – sudden child death - stillbirths

This concerns support and assistance for those experiencing losing children suddenly and unexpectedly, whether the child has been allowed to live for a while, died at birth or died during pregnancy.
.
Recommendations for follow-up after cot death1, sudden child death and stillbirths is partly based on the "SIDS Portfolio", a tool for healthcare professionals who accept or follow up families after a child has died. The SIDS Portfolio is prepared by the Norwegian union for unexpected child death2, who has conducted an extensive and important task over many years to improve psychosocial assistance after SIDS, and in recent years after sudden child death and stillbirth. The following procedures for psychosocial assistance should obviously also apply to those cases where older children die suddenly.

1. The mobilisation phase

Objectives: To get an overview of and contact with parents, siblings, or other close relatives who need psychosocial assistance after a child’s death, to initiate adequate psychosocial assistance as soon as possible. To unify those who will be responsible for the support offered.
Measures: The objectives can be achieved through written procedures that are clear regarding notifications and referrals, as well as the target group for the relief measures and the criteria for follow-up of those left behind when dealing with child deaths. When a child has died, the psychosocial follow-up begins in the second line unit (hospital), but is often "transferred" to the primary care institutions in the municipalities.
Notifications:
When SIDS and other sudden child deaths occur at home, alerts go through parents or those who find the child alerting emergency centre at the hospital, possibly doctor, police or others. All such deaths should be registered and received at children's wards in hospitals nationwide, along with parents and any siblings. When it comes to stillbirths, parents will be in the hospital, so the need to be put in contact with the welfare is taken care of.

Target group and criteria for follow-up:
    •The deceased child's parents and siblings are the primary audience for follow-up.
    •The procedures take effect when the family is in, or arriving at the hospital reception/child-/maternity ward.
    •Routines take effect, regardless of the child's age.
    •Those who are left behind are defined as next of kin (parents, siblings, grandparents, etc.). Pay special attention to mothers who have just given birth, and who can be very vulnerable.
    •Workplace, possible siblings’ kindergarten / school; make sure that they are cared for through the crisis plans.

2. The emergency phase

The Board of Health Circular No. IK-22/92 imposes hospitals to establish procedures for "adequate investigation of the cause of death and for information and follow-up of the relatives." But if geographical distances complicates follow-up by the hospital, the hospital has a responsibility to ensure that the family will be followed by other health institutions such as a health visitor, GP or through the municipal Crisis Team.
Objectives: To calm and limit the experience of loss of control by reducing stress, to make it possible to control emergency reactions and re-establish a certain order and structure, so that the parents and siblings left behind eventually may recover and resume previous functions.
Measures: The objective can be achieved through clear written procedures for emotional first aid and how to take care of the relatives. Also through information and counselling, rituals, mobilising the social network’s support and possible organisation of practical help. Medical examinations of the child is a part of the routine admission and is subsequently very important for the psychosocial care of those who are left behind.
Coordination and responsibilities:
    •Contact/monitoring teams, a minimum of 1 doctor and 1 nurse. They manage medical examinations and psychosocial follow-up inside the hospital.
    •If siblings have come to the hospital, an extra nurse should take responsibility for the children.
    •The follow-up team should be qualified to carry out both the medical and psychosocial work.

Methods:
    •The child is registered as a patient (if it is not already in the hospital) and a regular journal is resumed.
    •Medical sampling of the child, resuscitation if necessary.
    •The doctor will contact the police - telephonic adequate (cause of death).
    •Taking care of parents and siblings in the hospital (doctor and/or nurse, social worker, hospital chaplain).

Measures – Taking care of parents and siblings at the hospital:
    •Physical and emotional first aid and taking care of relatives (see SIDS Portfolio - section 1.2.3). General rule: Be open and receptive regarding the thoughts, feelings and reactions of those left behind. Give confirmation and acknowledgment of their experiences (see Measures). It is important not to stimulate a conversation about the emotional aspects of the incident the same day that it has occurred, as this could reinforce the memories of the event. Sleep within the first six hours afterwards should be avoided for the same reason.

    •Preparation/caretaking in the event of identification or autopsy.
    •Special measures.
    •Offer the family a separate room.

    •The examining doctor should convey the death message.
    •If relevant, offer mother Parlodel for inhibition of breast milk production.
    •Offer mother/father sick leave.
    •First conversation. Systematic review of events, sensations, thoughts and reactions. (Who found the child? Who were present? Last memory of the child alive? What happened in the time before/after the child was found? Who knows about the death? Are the siblings there, or are someone else taking care of them? Speak directly with the siblings, and include them in the process). See Rituals and www.krisepsyk.no / Theme pages – Grieving children.

Suggested topics for information and further conversations:
    •Regarding medical sampling of the child and imminent autopsy (see the letter "Autopsy of foetuses and children").
    •Information regarding scene of death investigation.
    •Normal grief and crisis reactions (children-adults, men-women, guilt etc.) (see Reactions).
    •Information to the environment (does next of kin have information requests to friends/family/kindergarten/school/workplace? About the participation of others?).
    •Framework for an active farewell (discuss whether they want to see/be with the deceased child, and stimulate to active participation in the planning of the funeral/memorial. See brochure "Funeral Guidance") (see Rituals).
    •What it will be like to come home (prepare for reactions on seeing the scene of death, the child’s clothes, toys, etc. Advice for not clearing away or throw away at once. Important to maintain daily routines/functions).
    •Family interaction (irritability, vulnerability, lower frustration tolerance, grief out of step or different grief reactions within the family, difficulties in the relationship, etc.).
    •The needs of underage siblings/relatives. Important with open and clear communication. (See the brochure ”Små barns sorg”, ”Skolebarn og sorg”, ”Ungdom og sorg” published by LUB). (See Rituals, and www.krisepsyk.no / Theme pages - Grieving children).
    •Regarding reactions to be expected from social surroundings. (Important with openness toward the outside world and to include the closest network to get necessary support and prevent network from pulling away.) See the brochure "Plutselige dødsfall – hvordan kan du hjelpe?" from LUB (see Resources/cooperation and Social network support).
    •Inform about Landsforeningen uventet barnedød (LUB), and foreningen Vi som har et barn for lite. (Note: Ask if they will sign a consent form in order to allow LUB get in touch later).
    •Provide written information. (About SIDS, early child death, stillbirths and grief reactions, etc., or addresses to support organisations on the Internet. For instance a brochure from LUB: «Når et lite barn dør – i mors liv, ved fødselen eller i sine første leveår»).
    •Members of the social network should be contacted in order for them to receive the family when they come home from the hospital.

Time frame and transfer to further follow-up:
    •According to the Board of Health Circular No. IK-22/92, (attachment ch. 1 in the Cot Death binder), the team at the hospital is mainly responsible for further follow-up.
    •The hospital will take care of the family at this first meeting on the day of the death and at least once more, when the autopsy results are ready.
    •To establish contact with the primary health services in the municipality where the next of kin lives, the municipality’s health visitor should be contacted the same day or the following business day. If possible, the community nurse should be included in some of the conversations at the hospital.
    •If the hospital team is to manage further follow-up, the family should be followed by the same persons they met when the first contact was made. The scale and times of this should be agreed upon with the family before they leave the hospital to go home.
    •If the primary health care services are to assume further follow-up responsibility from the hospital, the person responsible for the hospital’s follow-up should come to an agreement on this with the municipality’s crisis team, and inform the relatives in writing about further follow-up times and place in the municipality.

3. Further follow-up

Objectives: Give those who are left behind help and support over time according to the needs of the individual/the family or other affected parties, so they gradually can resume a normal, everyday life. Contribute to normalise the thoughts, feelings and reactions of those left behind, as an important part of the grief process. Seek to stop the traumatic experience from manifesting into physical or psychological disease, and keep it from providing unnecessary suffering that makes participation in work life, school or social life difficult.
Measures: The objective can be achieved through clear written procedures for regular contact with close relatives and, along with them, continuously assess the need for measures, further investigations and provide necessary help and support if needed. Contact and offers of help should be there in the first year after the child’s death and for some, perhaps even longer.

Coordination and responsibilities:
    •If further follow-up takes place at the hospital, the receiving team (doctor/nurse) should be the ones following the family further on.
    •The community nurse can be an important connection between follow-up at the hospital and in the primary health services.
    •If the hospital comes to an agreement with the primary health services regarding responsibilities for further follow-up and transfer to the crises team, the crisis team will report on and coordinate necessary help measures.
    •If further follow-up takes place outside of the hospital, the community nurse should be central, also in the further follow-up, especially regarding siblings.
    •It should be made clear which professionals, in addition to the community nurse, should participate, and who is to be responsible for what.
    •Which professionals, in addition to the health visitor, should participate and how responsibilities should be dealt with, should be clarified.

Methods:
    •Follow-up conversations.
    •Information.
    •Home visits.

Measures (suggestions):
    •The conversations initiated by doctor, nurse, health visitor, chaplain or others should be carried through. Likewise necessary medical treatment/consultations should continue, as well as practical assistance initiated in the emergency phase.
    •The topics of the information and conversations in the long-term follow-up would depend on the topics discussed in the emergency phase, and on which topics have been put on hold for appropriate reasons.
    •The following topics would be central to repeat/add in the further follow-up:
    •What has happened since the first contact at the hospital?
    •How is the family/the adults/the siblings coping with everyday life?
    •How can the siblings be supported (see «Support for grieving siblings» in the Cot death cover and the brochures mentioned over).
    •How is the family interacting? (Communication patterns, do they protect each other, change of roles, etc.)
    •Loss and memories (insisting memories about the death, how to relate to the child’s belongings).
    •Realistic time perspective of grief, reactions and difficulties (see Reactions).
    •Social expenses and the feeling of being alone with the grief (see Social network support).
    •Wear and tear on the relationship (see attachment «Gender differences in grief» and «Relationships in grief» in the Cot death cover, and LUB’s DVD by Atle Dyregrov – «Samtale om sorg»).
    •How memorable days are experienced.
    •Sex life after the death, new pregnancy.
    •Need to discuss, understand more of the autopsy report?
    •Trauma specific mapping/screening of PTSD, anxiety, depression and complicated grieving is implemented if needed (see Mapping).
    •Referral to specialist health services if needed based on screening results.
    •Evaluate/offer longer sick leave.
    •Counselling/guidance: how to handle grief/crisis reactions, how to handle relationship problems, handling of children’s grief (see Measures and www.krisepsyk.no / Theme pages – Self-help methods, Grieving children).
    •Information about how important it is to make use of help from friends, family and other social networks.

    •Legal and financial guidance regarding other situations that may occur.
    •Establishing contact with grief and support groups at the hospital or through organisations for relatives (Landsforeningen uventet barnedød (LUB), the organisation Vi som har et barn for lite and Lenker).
    •Get in touch on memorable days.

Measures for response personnel/helpers:
In individual cases follow up of response personnel after a child’s death is not normally necessary, but it is important to regularly examine how help measures work. (For cases where the crisis team is more severely touched – se «Measures for helpers» under Transport accidents.)

Time frames:
    •The follow-up conversations with those left behind should be offered frequently during the first month. The contact should last until at least one year after the death. An important criterion for ending the contact is that those who are left behind feel that they can participate in daily life and leisure without the reactions after the child’s death inhibiting their participation and self-expression.
    •Suggestion for contact frequency: Frequent meetings with the family during the first month and at least at the temporary and the final autopsy report (see the Cot death cover). Telephonic contact with the family after two, four, eight and twelve months. This can be followed up by the GP in coordination with the crisis team.
    •The follow-up team should be especially aware of how the family perceives memorable days in connection to the death.
    •If those who are marked by this express little interest for contact, i.e. in the beginning or at one of the suggested points of contact, the team should respectfully withdraw, after having asked for permission to contact them again at a later (given) time. They should be informed that the team possesses knowledge regarding how the need for help can vary over time, and that it is normal for the grief to fluctuate and change after a traumatic death. If the family does not want any more contact at all, they should be informed of a person or a telephone number they can contact if they feel a need for help later on.
    •After a year the main contacts (hospital team, community nurse, GP, others) should normally be able to relate less extensively and actively with psychosocial follow-up for the relatives, and continue contact as prior to the event. At any sign of isolation or other kinds of passiveness, the more extensive phase should nevertheless continue beyond the first year.

1.Definisjonen av krybbedød – Sudden Infant Death Syndrome (SIDS) som anvendes i Norge er følgende: ”Plutselig død i spedbarnsalder som er uforklarlig etter gjennomgang av sykehistorien, undersøkelse av omstendighetene ved dødsfallet og obduksjonen” (Rognum & Willinger, 1995). Med dødfødsler mener vi barn som dør mellom 20 og 40 uke i svangerskapet. Med barnedød tenker vi på barn opp til 18 år som dør av ulike årsaker. [?]
2.Krybbedødspermen ble utarbeidet første gang i 1991, og totalrevidert pr. januar 2004. Landsforeningens medisinske fagråd som kvalitetssikrer foreningens forebyggende arbeid står samlet som forfatter av Krybbedødspermen, mens fagsjef Trine G. Kalstad er medforfatter og redaktør. [?]
3.For ytterligere detaljer – Se sykehusets Krybbedødsperm. [?]