Line Christoffersen, Ph.D. Oslo School of Management/Landsforeningen uventet barnedød
In this project we have looked on the interaction between parents and the Norwegian public health service previous to, during and after stillbirth. How the public health service handles these critical incidents are of crucial signification for how the parents are able to return to a meaningful life after the experience.
The objective for the project has been to understand what the parents define as critical incidents and how they interact with the health service during these critical times. Parents who have personally experienced stillbirth can give valuable knowledge and assist the public health sector in giving advice on how they can best follow-up and assist other parents going through the same tragedy.
Below we have summarized what parents have defined as critical incidents when receiving assistance from the public health service:
Critical incidents surrounding receiving the message that the baby has died in the womb
Parents wish that they had received information early in the pregnancy, that if they noticed changes in the pattern of movements, they should not hesitate to contact their health professionals. Even though the mothers suspect that something might be wrong, they often wait a long time before contacting the hospital. This is due to her feeling afraid of appearing hysterical or over anxious. Mothers often experience guilt if something is seriously wrong and they have waited a long time before coming in.
When parents finally do have the courage to come into the hospital for a check, they do not wish to be told that everything will surely be fine or it ´s probably nothing. They wish to be taken seriously with their concerns and come quickly in for an ultrasound.
Parents tell us that when it is discovered by the health personnel that there is something wrong, they wish to be informed. Its much better to be told that something is wrong, than to have information be held back or be given excuses on faulty equipment or hear that the child is lying in a difficult position therefore they cannot get a good scan, etc.; when in fact they have already discovered that the child is no longer alive.
When the message is given to the parents that their child is in fact no longer is alive, its important for the parents to be given time to grieve without there being too many persons in the room. Thereafter its imperative that someone sits together with the parents and explains what they can expect before and after the birth, and what is important for the parents to do in the short time they have together with the child.
It is important to talk to the parents as a couple as they are going through this together. Do not focus only on the mother.
Critical incidents during and immediately after the birth
It is imperative that the first conversation with the midwife or other health personnel includes information on the birthing process itself, on how the birth will proceed, what will be done with the child and what the child will look like.
It is very important that the health personnel handle the stillborn child as if it were a living baby. That they comment on how he baby looks, how wonderful/beautiful he or she is. It is important that the baby be brought up to the mother, properly weight and measured. How the midwife holds the baby and cares for the baby is absolutely imperative for how the parents will proceed in receiving the baby.
Parents need to be given instruction as to what they should do immediately after the birth. It is better to come with examples as to what other parents have done in the same situations, instead of asking the parents what they prefer to do. A newly born stillborn is warm for only 30 minutes. It is very important that the parents touch, hold, smell and caress the baby during this first half hour.
In the first meeting with the child it is very important that the health personnel have experience in assessing the sensitivity of the situation. They ought to know whether it is correct to encourage the parents to look at and hold the child immediately after the birth or if they should delay this process. All of our informants have seen their dead child, but not all of them have held or cared for their child. Most of the parents who did not hold and care for their baby ended up having regrets.
A care package in the form of infant clothes in different sizes can be given to those parents who did not prepare to bring clothes for the baby.
Health personnel should encourage parents to give a name to the child and that they should use the name, when referring to the child.
Critical incidents around creating memories
Parents should be encouraged to take a camera with them to the hospital and to take lots of photos of the newborn baby. Photos from different angles, the child alone, together with & without the parents, photos of their little hands and feet, catching detail.
It is a good idea to take hand and foot prints of the child, making sure they are of good quality, as the parents will appreciate this later.
Cut a small lock of hair and encourage parents to take care of the clothes, blankets, stuffed animals while the child was in hospital. Remind the parents not to bury these items with the child, but that they be kept as memories.
Critical incidents around the hospital stay
It is imperative that the parents be kept a distance away from other birthing parents and their excited visitors while at the hospital.
Parents often have many questions, but hesitate in asking them. It is important that the health personnel take the time to talk with the parents such that they feel free to and have the time to ask their questions.
Fathers also need someone to talk to about their role without the mother present.
Let the parents have access to their baby as much as possible before and after the autopsy.
Let it be acceptable for the parents to change their minds in regards to seeing and holding the baby.
It is important that the parents and the babys siblings not see that the baby head is covered when the baby is being taken in and out of the parents room, and through the hospital corridors, unless it is discussed with parents first.
It is best to wait a few days, or perhaps until the last hospital stay conference before bringing up the topic of having another baby. Remember, it is the mother who is usually the first of the two parents ready to talk about a new baby.
Remind the parents to inform their family and friends that the child has been born. Encourage the parents to also let family and friends see and hold he dead baby as this helps them to create a unique relation to the baby.
It is important to tell the mother that it is not her fault that the baby died and that it is nothing to be ashamed of!
Having a minister present and a ceremony at the hospital is helpful in legitimizing the baby, as also a death announcement. These should be encouraged.
Counselors at the hospital should be knowledgeable of financial burial support, sick leave, parental leave, etc.
The last hospital-stay consultation should focus on:
Critical incidents related to the autopsy of the child
It is important to inform the parents, even before birth, that the child will be given an autopsy and that it is a standard procedure at the hospital. Give the parents an opportunity to ask questions. Do not spend too much time on this topic before the birth, as the main focus before the birth should be on the remainder of the pregnancy, preparing for delivery, the actual birth and the time immediately after delivery.
It is important for the parents to receive information on what an autopsy actually includes, why it is necessary to complete the autopsy, why it is important to do it so quickly after the birth, what is to be done with the childs organs, and how the child will appear after the autopsy, and whether the child will be able to be seen again. Parents prefer to have the information also in a written format, as it is a lot to comprehend and details can easily be forgotten given the enormity of the situation.
Give an opportunity for the parents to ask questions, and have competent persons available to answer their questions.
Allow parents time with the baby before the autopsy is conducted and therein return the baby quickly after the autopsy is completed.
Allow the parents to see, hold and care for the baby also after the autopsy.
The autopsy results need to be given to the parents in a timely manner such that the information can be of help with respect to the next pregnancy.
A thorough review of the autopsy report must be conducted with the parents. Have a pathologist present.
Critical incidents related to returning to everyday life
Health service personnel must set aside time for home visits for the grieving parents, just as they set aside time for families with newly born, living, children.
It is common for these parents to experience the following four strong emotions: Guilt, shame (worthlessness), anxiety (over the next pregnancy or loosing ones spouse or sibling) and jealousy (of those with living children and/or are pregnant). It is imperative for the parents to realize that these feelings are normal to have, given the enormity of the loss they have suffered. Counseling sessions can help parents work through these feelings; if not handled correctly these feelings can lead to social isolation.
Group therapy -bereavement groups often work well for mothers, but fathers often do not like this form of therapy. Fathers prefer to converse with others that have lost their children on a one-on-one basis.
Bereavement groups (supported by the hospitals) should start 1-3 months after the loss of the child and take into consideration:
The familys primary care physician should not be a bottleneck for parents needing support beyond what is available via the health care system or other grief organizations.
Following up the next pregnancy is vitally important:
Translated from Norwegian by Sigrun Farstad Gregori and Patricia Orøy
Sist oppdatert 2. februar 2009