Introduction
Perinatal loss has been described as a life crisis for both parents and professionals alike (Gardner, 1999). The death of a baby is not uncommon at one every 200 births, but most staff feel uncomfortable dealing with it. It is difficult to develop expertise in something which occurs so sporadically (Cartwright & Read, 2004), and certain midwives who volunteer more readily than others may get called on each time, risking burnout.
Death is not the expected outcome of pregnancy, and parents can be left stunned. The loss of their baby may be some parents’ first experience of death (Rajan, 1992). They have to face not only the loss of the person whom they have helped to create, but also the loss of future ambitions, hopes and dreams. These parents undergo intense grief reactions. These feelings are very similar to any other form of bereavement (Golding, 1991), and although every experience of grief is personal and intense, this is a normal healthy response to loss. Typical symptoms may include shock, numbness, disbelief, emptiness, a sense of failure, anger and guilt. There may also be a recurrence of feelings related to any previous loss.
The midwife provides support in the very early stages of the grieving process, when denial, guilt and anger may be most in evidence (Butler, 2000). Kohner (1995) stresses that this is a difficult and demanding time for professionals. What they say and do may be critically important. Their words and actions are frequently remembered by parents for years to come, and may influence their memories and their grieving.
Definition
A stillbirth is defined as a baby delivered without life after 24 weeks of pregnancy. The stillbirth rate is the number of stillbirths per 1000 live births and stillbirths (Confidential Enquiry into Maternal and Child Health (CEMACH), 2007).
The Royal College of Obstetricians and Gynaecologists (RCOG, 2005) has decided recently that a baby known to have died before 24 weeks but born after 24 weeks (e.g. early death of a twin who is then born with its live sibling near term) should no longer be registered as a stillbirth.
The perinatal mortality rate is defined as the number of stillbirths and early neonatal deaths (those occurring in the first week of life) per 1000 live births and stillbirths (CEMACH, 2007).
Incidence and facts
- The stillbirth rate in England, Wales and Northern Ireland was 5.5 per 1000 births in 2005. Perinatal mortality was 8.2 per 1000 (CEMACH, 2007).
- CEMACH (formerly Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI) from 1992 to 2002) is committed to improving outcomes in maternal and infant health. There has been a significant downward trend in intrapartum-related deaths (CEMACH, 2007).
- Although the last 50 years have seen dramatic improvements in social welfare and maternity care, almost 1% of women entering the second half of pregnancy will lose their baby (Fox et al., 1997).
- The immediate care a woman receives during a stillbirth can affect her emotional status at least 3 years after delivery (Radestad et al., 1998).
Predisposing factors for stillbirth
The main causes of stillbirth are broadly classified by CEMACH (2007) as severe/lethal congenital anomalies (16%), antepartum haemorrhage (8%) and intrapartum cause (7%). Over 50% are unexplained.
Predisposing factors (see Box 20.1) are a complex area. It is often impossible to separate maternal and fetal factors. Some are social and very hard to address. Others are disease specific and more controllable. Generally, however, predisposing factors have poor predictive value.
There is no helpful mortality rate for home births. Most home stillbirths and neonatal deaths are unplanned home births, usually preterm: presumably due to rapid labour and the mother is unable to get to hospital in time. Twenty-five per cent of these home births are unbooked pregnancies (CEMACH, 2007).
Diagnosing fetal death and decision making
The beginning of the grieving process
When a fetus or baby dies, parents should be told at once (Kohner, 1995). Delay will inevitably cause greater stress. Confirmation should ideally take place with both parents present. The attitudes and empathy of midwives and doctors at the outset of this traumatic experience will influence from the beginning the grieving process, and the memories they take away with them. Two doctors should be present for confirmation of intrauterine death and real-time ultrasound should be performed (National Institute for Health and Clinical Excellence (NICE), 2007a) by a practitioner skilled in real-time imaging and able to discuss the findings openly with the mother (Fox et al., 1997).
Box 20.1 Predisposing factors for stillbirth and neonatal death.
- Maternal age <20 or >40 (CEMACH, 2007).
- Body mass index >30 (CEMACH, 2007).
- Social deprivation doubles the risk (CEMACH, 2007).
- Ethnicity: women of black and Asian origin have approximately double the risk (CEMACH, 2007). Women with refugee status may be three times more at risk (Lanchandani et al., 2001).
- Placental problems: e.g. praevia, abruption and intrauterine growth retardation.
- Maternal disorder: e.g. pre-eclampsia, infection, diabetes and cholestasis.
- Prolonged pregnancy >41/40.
- Multiple pregnancy.
- Isoimmunisation.
- Cord compression/accident.
- Uterine rupture.
- Placental abruption.
- Prematurity: by far the largest category.
- Low birth weight.
- Birth trauma.
- Infection.
- Congenital malformation.
- Accident.
- Sudden infant death syndrome.
Good communication and honesty are essential. Full explanations should be given by midwives and doctors. Lovell (1983), cited in Moulder (1999), noted that some women were critical of the way staff handled the diagnosis of an intrauterine death or an abnormality; a succession of different staff were involved; staff were ill prepared and some unable to conceal their own distress at the diagnosis. When a mother first understands that death has occurred, there is a sense of shock and numbness temporarily preventing her from being overwhelmed by the full impact of the event (Jones, 1997). Some health professionals may find it difficult to know what to say at this point. If a partner is present, it may be appropriate to give them a few moments alone before they are faced with painful decisions. A trained interpreter should be made available to women who do not have fluent English.
The distress of the father is sometimes comparatively disregarded (Stillbirth and Neonatal Death Society (SANDS), 2007). He may feel distraught with grief, angry, helpless, even guilty (Bennett et al., 2005) and deeply disturbed by his partner’s distress. He may suppress this, feeling he must not show the depth of his grief to staff or even sometimes his partner through fear of upsetting her further. Make it clear that he is not just there as a supporter: ask him how he is and include him in all information giving, acknowledging that he too is a bereaved parent.
Planned termination for fetal abnormality may make it easier for staff to reconcile the death (Walpole, 2002) but it may not be easier for any parents. They are likely to grieve like any other parents, and guilt at having chosen to end their baby’s life may compound their suffering.
Decision making and choices
Parents will be looking for guidance from staff. Supporting grieving parents to make important decisions at a time of unbearable sorrow and anguish is one of the most challenging roles undertaken by a midwife (Thomas, 1999). The midwife should have a caring, sensitive and non-judgemental attitude, acknowledging the importance of the loss. Basic counselling/listening skills are very helpful. It can be stressful to give control and choice to parents if their decisions differ from those that professionals would make on their behalf (Kohner, 1995).
Decision making can be very hard for the mother at this time. Due to the impact of overwhelming shock and disbelief, midwives and doctors may have to repeat themselves and reiterate questions, as information is not always retained if given only once. This is made worse if the woman is in pain.
Mode of delivery
It may be possible to discuss in advance the options and support available for labour and birth. A woman whose baby has died in utero may be shocked to learn that she is advised to have a vaginal birth. It is a frightening thought to give birth to a dead baby. Her first reaction may be that she requests to have a caesarean section. Take time to listen to her reasons for this and discuss her worries about vaginal birth. Gently point out that caesarean delivery is thought to affect a woman’s physical and mental recovery, in particular her ability to identify and accept the loss of her baby.
Induction or expectant management
Unless the cause of the fetal death threatens the mother’s life, late fetal death seldom possesses a threat to maternal physical welfare (Howarth & Alfirevic, 2001). There is a small risk of disseminated intravascular coagulation and postpartum haemorrhage if the mother carries a dead baby for several weeks, but generally awaiting spontaneous labour is safe.
However, Radestad et al. (1996) noted increased anxiety in women who were induced more than 24 hours after diagnosis of death in utero, and suggest that birth should occur as soon as feasible after the diagnosis. Delaying birth on the other hand may give some parents time to come to terms with the situation. The decision of whether or not to induce rests with the parents themselves and that choice must be respected and supported.
Induction of labour following late intrauterine death differs from other inductions: fetal well-being is no longer an issue, so side effects and complications need only be considered from the maternal perspective. Also most planned inductions with a live baby occur near term, while inductions for fetal death present over a wide range of gestational ages (Howarth & Alfirevic, 2001).
Place of birth
Whilst most women give birth in a consultant unit following intrauterine death, the parents may choose otherwise. Thomas (1999) suggests that in the presence of an experienced midwife this sad event, occurring in the security of the home away from all the noise and intrusion of the hospital, can give parents positive memories and a sense of controlling events rather than events controlling them.
Midwives in a community unit/birthing centre or at home may be less experienced in caring for a stillbirth, but in one sense the birth is like any other. Postnatally there is rarely any urgency, so blood samples and paperwork can usually be undertaken slowly. Consent for any post-mortem must be signed by a doctor, but this does not have to be done straightaway. A supervisor of midwives can be an invaluable resource, and consultant unit staff are often happy to give telephone advice.
A doctor will still need to certify death, and some general practitioners (GPs) may be unwilling to be involved, since they are uncertain what to enter on the certificate as ‘cause of death’. Cases have been known where a GP feels obliged to report this technically ‘unexplained death’ to the police, and this can involve a lot of unnecessary bureaucracy and distress which a hospital birth will avoid (Charles, personal communication). A doctor is usually involved in taking skin biopsies from the baby (if requested), which may be awkward at home.
These are just practical considerations, and should not discourage midwives from supporting women who choose to give birth at home.
Midwifery care in labour
Compassion and individualised care
The woman needs sensitive care from a midwife who is not afraid of her or her baby, and who shows respect and regards the baby as a precious, delicate little person. A study of late pregnancy loss by Moulder (1999) found that trust between the woman and her midwife was of key importance.
The diversity of women’s needs must be understood. Touch, for example, may help some women during stillbirth, but not others (Butler, 2000). Cultural differences may affect reaction to loss; it is important not to make assumptions (Schott & Henley, 1996; Nallon, 2007). The mother may be unwilling to see or hold her baby due to a specific religious or cultural prohibition against seeing a dead body. Equally, be aware that whilst she may technically belong to a religious group, she may hold uncertain or ambivalent views and not wish to follow any rigid practice.
Ideally, the birth should take place away from the main busy delivery suite area, in a quiet, calm atmosphere.
Observations
Prior to induction (if necessary) for intrauterine death, check blood pressure, pulse and temperature and test urine for proteinuria to exclude pre-eclampsia.
If the fetus may have been dead for some time, then take maternal blood for a platelet count and clotting studies as disseminated intravascular coagulation could be a problem. One-third of women with abruption and fetal demise develop some degree of coagulopathy (American Academy of Family Physicians (AAFP), 2004).
Once labour has commenced observations are as per normal labour (see Chapter 1).
Fetal heart monitoring is obviously not required. The absence of the baby’s heartbeat serves as a painful and constant reminder to the mother and midwife that there is to be a tragic outcome to this labour.
Analgesia
Distress is worsened by the fact that the woman must undergo labour, which is both psychologically and physically painful (Smith, 1999). Radestad et al. (1998) report that women undergoing stillbirth use more analgesia than women delivering a live baby and describe the labour and birth as unbearably physically hard. The woman must be reassured that support and adequate pain relief will be available to her at any time. Any maternal pyrexia/infection will be a contraindication to epidural anaesthesia (Swanson & Madej, 1997). This information must be shared with the mother, otherwise if refused a promised epidural she may feel let down by the midwife.
The birth of the baby
Giving comfort and support to the bereaved parents at this time of enormous sadness will help create a positive birth experience.
A slow and gentle birth will minimise damage: the skin is often very fragile. A baby who has been dead for some time may be macerated: parents should be gently prepared for this possibility.
Small premature babies presenting by the breech can have a slow head delivery. Babies who have died often deliver slowly due to absent tone. This can be distressing and parents will need extra support at this time.
Clarify, well in advance if possible, whether the mother wishes to have her baby given straight to her. If not the baby could be wrapped in a small towel (not paper as it will be difficult to remove from the baby’s skin later) and then offered to the parents to hold.
Third stage of labour
If the dead baby has been retained in utero for several weeks or in cases of suspected placental abruption (or other risk factors – see page 208 in haemorrhage chapter), the mother is at increased risk of postpartum haemorrhage. Particular risk factors may have been identified at confirmation of fetal death and by blood tests for infection and clotting studies. In such cases active management of the third stage is advised.
Following birth, the placenta should be transported according to local pathology guidelines. This varies between hospitals; some pathologists request the placenta is sent dry, others request it is transported in formaldehyde.
Immediate care following birth: precious moments with the baby
The meeting with and parting from the baby is a unique time.
Attitudes to pregnancy loss have undergone a revolution in recent years. Many feel that it is good to offer the parents involvement with their dead baby (Matthews et al., 2002; Hughes & Riches, 2003; SANDS, 2007). They should be aware that they can have as much time on their own with their baby as they wish. However, they should not be forced to view, hold, caress, or kiss the baby (SANDS, 2007). Such actions do not appear to reduce the risk for anxiety or depression (Radestad et al., 1996). Hughes et al. (2002) found that holding a dead baby had a negative impact on many mothers and their next-born child, and suggested that parents should not be pressurised into holding their dead baby or be told that mourning would be more difficult if they did not have this contact. SANDS (2007) also recommend that women should not be forced to view, hold, caress or kiss the baby. Unfortunately NICE (2007b) have slightly misinterpreted Hughes et al’s study since NICE state that “it is now considered unhelpful for women to see and hold their babies (after stillbirth) unless they particularly wish to do so.” This was not a conclusion of the study and Turton (2008), who was one of the researchers, states that some – although far from all – parents did value contact with their baby. The only conclusion from all this is that the midwife should treat women/couples as individuals and try to anticipate and respond to their particular needs and wishes as far as they can be gauged.
If the parents wish to hold the baby (and most will), fears may be minimised by advising them beforehand how the baby will look and feel: e.g. it will feel floppy and may have some movement of the skull bones (Dyer, 1992).
Creating memories and mementos
Memories help to facilitate mourning. The added difficulty when grieving for a stillborn baby is that parents have not had the time to get to know their baby. There is no known person to talk about. To assist parents to grieve normally, the most should be made of what is available to create special memories for them (Greaves, 1994).
Many maternity units have recognised this need and provide memory booklets (often supplied by SANDS the Stillbirth and Neonatal Death Society), to contain mementos. Footprints and handprints can be taken, put on to card and placed in the booklet. Include locks of hair, name bands, the tape measure and the baby’s personal details such as weight and measurements.
Most parents have a camera with them for the birth. If not, some units offer a camera for use by the parents; they can be given the film to develop in their own time. Hospital policy may recommend a polaroid photograph is placed in the mother’s notes. Parents should be told that polaroid photos will eventually fade, especially if exposed to light.
If they wish, parents can bathe and dress their baby in clothes they have chosen; this process may take a long time and should not be hurried. If the parents wish another family member, or member of staff could do this.
The sensation of smell can be an emotional trigger. Dusting clothes, shawls and soft toys with baby powder and placing keepsakes in a plastic bag will preserve the smell for many years, providing powerful memories.
Offering an entry in the hospital’s book of remembrance can give the parents comfort: they may wish to visit subsequently to view this in the hospital chapel.
Some parents may not wish to have any mementos of their baby for personal, cultural or religious reasons. Whilst these views would seem to be contrary to facilitating the grief process, they should not be viewed as abnormal or wrong (Schott & Henley, 1996). Unless there is an obvious cultural reason, it may be helpful to suggest that mementos are taken and filed away in the medical records, so that the parents could ask for them at a later stage if they wished. Some parents may take time to assimilate the experience and subsequently regret the absence of mementos.
Other members of the family, such as siblings and grandparents, may wish to see the baby so they can create their own memories and say their own goodbyes. Parents need to be prepared for the honesty that children can show. This may be a confusing time for them. They have often been looking forward to the birth of their baby brother or sister. They sometimes ask unexpected questions; guiding the parents to be honest is the best course of action. Children are very accepting of death as long as they are able to participate and share the experience with their family (Dyer, 1992).
Ongoing care in the postnatal period
Checklists, tests and paperwork
There are various maternal tests that can be undertaken to try to identify the cause of fetal death. Obstetricians and hospitals vary in the blood tests they offer. (Refer to Chapter 23, p. 19) Maternal and paternal genetic tests may also be offered, and possibly follow-up genetic counselling.
Checklists are used to avoid important tasks being overlooked and to prevent the parents being asked the same questions repeatedly. A checklist example is given in the Appendix. Schott and Henley (1996) argue that a checklist can sometimes be used inflexibly and can become an end in itself, rather than a way of ensuring that the needs of the parents are met. Focusing on a checklist may be a way of depersonalising the situation and minimising the time spent with parents.
Post-mortem (autopsy)
Many parents want to know the cause of their baby’s death, though they may find the idea of a post-mortem distressing. Staff may fear to approach the subject, although the urge to protect parents is often misplaced:
‘The worst thing possible had happened – my baby had died. You couldn’t tell me anything that was more upsetting than that’ (Henderson, 2006).
Since Alder Hey (Redfern, 2001) some parents are reluctant to allow a post-mortem on their baby, and the perinatal pathology service is experiencing recruitment and retention difficulties (Rose et al., 2006). This unsatisfactory situation may lead staff to discourage parents from having an autopsy. Post-mortems have declined from 58% all deaths in 1993 to 39% in 2005 (CEMACH, 2007).
A coroner may order a post-mortem, particularly if the death is unexpected or resulted from an accident. Parents often hope that a post-mortem will give them the reason for their baby’s death, but they should be aware that this is very often not the case: only around 20% yield a cause of death (CEMACH, 2007).
Post-mortem must be discussed very gently, giving clear unbiased information. Explanation of the procedure may help. The Department of Health (DoH) (2003a) has an information leaflet for parents. The NHS consent form (DoH, 2003b), revised following Alder Hey (DoH, 2003c) in trying to cover all eventualities, is very long and detailed; there is no perfect answer to the problem of giving full information and gaining full consent without overloading and distressing parents.
Post-mortem may be full or limited. Less invasive tests, e.g. X-rays, CT scans and tissue samples, may also be offered although they yield less information than a full post-mortem. If parents wish to have a post-mortem or have any major tissue samples (e.g. brain biopsy) returned for burial with the baby, they should be warned that this may delay the funeral, possibly by some weeks.
It is also helpful if the midwife notes anything unusual noted after the birth and records this in the notes and on the pathology request form, e.g. a true knot in the cord, a broken cord blood vessel and a pale baby’s body with a very contused face (which might indicate the cord was very tight around the neck). Many such ‘abnormalities’ may be incidental, but observations at the time may be helpful. Do not assume that the pathologist will observe everything: they will appreciate comments made by clinicians at the time. Later on, by the time a placenta has been handled by pathology technicians, and perhaps a piece of placenta has been cut off for microscopic examination, a key diagnostic finding such as a small nick in a blood vessel may have been masked. Avoid however being drawn into speculation on the cause of the baby’s death.
Registering the baby’s death
Box 20.2 describes the various certification steps required for registering a baby’s death prior to burial or cremation.
Spiritual beliefs and funeral arrangements
Formal burial or cremation is a legal requirement for all babies who are stillborn or die after birth. A funeral can provide a focus for grieving families to mourn. Attendance at the funeral by staff involved with the baby’s birth is often valued by both families and the staff themselves.
Many parents may have had little or no contact with death and have never had to think about making funeral arrangements. Rajan (1992) reports women being deeply hurt when asked how they would like the baby ‘disposed of’. This is such a sensitive issue and it should be handled with great respect.
The spiritual and religious outlook of individuals often takes on more importance during bereavement (Jones, 1997). Asking the bereaved couple if they wish to see a hospital chaplain, or other religious person if appropriate, may help them to reach any decisions and gain spiritual support. This may include having the baby baptised and/or named although this may not be suitable for every faith and culture. Hospital chaplains are usually a wonderful source of information and support. Most are extremely sensitive and will not dwell on religious matters if the parents do not wish it. However, even the most atheist parents may wish to speak some words over their baby to say goodbye. A few formal words spoken by a chaplain, such as: ‘We cry for James today, for the life he will not have and the hopes we had for him. We are so sad to say goodbye to this beautiful boy’ may help parents to have some sense of a ‘rite of passage’, and encourage tears to fall.
Box 20.2 Registering a baby’s death.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
