Information for parents – Stillbirth Clinical Care Standard
The Stillbirth Clinical Care Standard describes the health care that should be provided to women who are pregnant or planning a pregnancy, from before pregnancy to after a stillbirth occurs. It also addresses bereavement care for parents who have experienced any perinatal loss. Find out more about what the standard means, and the other resources available.
Stillbirth is when a baby dies before birth. In Australia, it is defined as the death of a baby after 20 weeks of pregnancy, or that weighs 400 grams or more.
Six babies are stillborn in Australia every day, meaning that one in every 140 pregnancies ends with stillbirth.
Some of the common causes of stillbirth in Australia include abnormalities with the developing baby, premature birth and health conditions of the mother. While not all stillbirths can be prevented, there are ways to reduce the risk before and during pregnancy.
Stillbirth has a tragic and profound impact on those who experience it. Being aware of stillbirth, and what can be done to help reduce the risk, is important if you are pregnant or planning to become pregnant.
This information sheet is for parents who have experienced a stillbirth. It provides information on the tests and clinical investigations that should be offered when a stillbirth is diagnosed, and how results should be recorded.
This information sheet is for parents who have experienced a perinatal loss. It provides information on the bereavement care and support that should be provided after the loss.
Stillbirth video series
The purpose of these videos is to help raise awareness of stillbirth and have been developed to provide insight and advice for expectant and bereaved parents from a mother with lived experience of stillbirth.
Understanding stillbirth - a mother's story
A message to expectant parents from a mother who has experienced stillbirth
A message to bereaved parents from a mother who has experienced stillbirth
Understanding stillbirth - a mother's story
A message to expectant parents from a mother who has experienced stillbirth
A message to bereaved parents from a mother who has experienced stillbirth
What the standard means for you
The Stillbirth Clinical Care Standard contains ten quality statements describing the care that should be provided to women who are pregnant or planning pregnancy, from before pregnancy to after a stillbirth occurs. It also addresses bereavement care for parents who have experienced any perinatal loss. Find out what the standard says and what it means for you below. Reading these statements will inform discussions with your clinician.
A woman intending pregnancy is offered pre-conception care that supports her to identify and manage stillbirth risks and improve her chance of giving birth to a healthy live-born baby.
What this means for you
Although most women who become pregnant give birth to healthy live-born babies, some women will experience a stillbirth. Around 820 babies are born in Australia every day – of these, six babies are stillborn.
Sadly, not every stillbirth can be prevented. But there are some ways to improve the chance of a healthy baby, even before becoming pregnant.
Sometimes pregnancy can happen unexpectedly. However, if you are thinking about becoming pregnant in the near future, it is a good idea to speak with a clinician who can provide you with information and advice, and support you to prepare for a healthy pregnancy. This may be a general practitioner, obstetrician, nurse or midwife. To help understand factors that may cause problems during your pregnancy or increase the risk of stillbirth, you and your clinician should discuss:
Your pregnancy and birth history
Whether you have had complications during a previous pregnancy, or a previous stillbirth (and the results of any investigations undertaken, such as an autopsy)
Your medical history, including conditions such as diabetes or high blood pressure (hypertension)
Tests to identify whether your baby could be affected by certain genetic conditions, and whether these tests are appropriate for you and/or your partner
Whether you, your partner or other household members are currently smoking and, if so, ways to help you, your partner or other household members to quit smoking
Your current alcohol intake and/or use of recreational drugs
Your body weight, and ways to support you to achieve a healthy weight, especially if you are currently overweight or obese.
Discussing these issues with your clinician can help you to prepare for your pregnancy, and make decisions about your health and wellbeing. Your clinician will provide you with information about any risks identified through these discussions, and recommendations for how to manage these risks, including what you can do to reduce your risks.
For some women, pregnancy can be a time of change not only for their physical health but also their mental health.5 Because of this, your clinician may also ask you about your mental health, and discuss ways to support your mental wellbeing before pregnancy. They can also arrange referrals to clinicians with specific training (for example, psychologists or qualified social workers) to support you, if this is something you would prefer.
You should expect that your care before pregnancy will be delivered in line with your personal and cultural needs and preferences. If required, your clinician should offer to arrange access to an interpreter to support your discussions, and/or an Aboriginal and Torres Strait Islander health worker or cross-cultural health worker, if this is something you would prefer.
A woman’s risk factors for stillbirth are identified early, monitored and managed with evidence-based care throughout her pregnancy. She is offered the most appropriate available model of maternity care for her clinical, personal and cultural needs.
What this means for you
Early in pregnancy, your clinician will work with you to identify any factors that may increase your risk of experiencing complications during pregnancy or birth. The possibility of stillbirth is one of the risks they will discuss with you. Although for many women the risk is small, your clinician will discuss any risk factors that may be relevant to you, and ways to reduce your risk. It is not possible to predict stillbirth, and it cannot always be prevented. However, factors that increase the risk for pregnant women include:
A history of a stillbirth, or complications during a previous pregnancy
Medical conditions such as diabetes or hypertension
Being pregnant with more than one baby
Being under 20 years of age or over 35 years of age
Smoking, or living with household members who smoke
Consuming alcohol, or using other drugs
Being overweight or obese.
Other factors that may increase stillbirth risk include experiencing family violence and having limited access to health care (such as women living in rural or remote areas).
Your clinician will work with you to identify and discuss any risks during your pregnancy, and ways to manage them. They may recommend that you consider further tests or investigations, treatments and supports. They may offer to refer you to other clinicians or services as part of this care.
Your clinician will discuss how your health can be monitored over the duration of your pregnancy, including things that you can do to support your own health and wellbeing. They will share information with you about any changes that may be needed as part of your care if your risks change during pregnancy. This may include having additional ultrasounds or other tests during your pregnancy.
Having regular check-ups during pregnancy is important for preventing stillbirth. This can be difficult for some women. For example, in rural and remote areas, it may be hard for some women to access the care they need as a result of limited availability of healthcare services, lack of access to transport and lengthy travel times required to access care. Some women may not feel comfortable in healthcare services because of previous experiences, language or cultural differences, or other concerns.
Your clinician will work with you to find a way to have regular check-ups during pregnancy, and to access relevant information to optimise your health and wellbeing, according to your needs and preferences. Where appropriate, your clinician should offer you the option of access to care via telehealth, especially if you live in a rural or remote area and cannot easily access this care.
It is important to let your clinician know if you have any other concerns about your health and wellbeing during your pregnancy.
Types of pregnancy care
In Australia, pregnancy care can be provided in different ways (sometimes called ‘models of care’). The main differences are in:
Who provides most of your pregnancy care – this may be a GP, a midwife or group of midwives, an obstetrician or GP obstetrician (a GP with specialised training in obstetrics), or in some cases a combination of these clinicians
Whether you usually see the same clinician or group of clinicians throughout your pregnancy (sometimes called ‘continuity of carer’), or a different person at each visit
Whether your care is through the public or private healthcare system.
Some GPs have a particular interest in pregnancy care, and provide this care to women in partnership with a local hospital or maternity service – this is called ‘shared care’. You can ask your GP if they offer shared care, and for further information about what this model of care involves.
Some models of care have been developed specifically for Aboriginal and Torres Strait Islander women to ensure that pregnancy care is delivered in a culturally safe environment – this often involves an Aboriginal and Torres Strait Islander clinician, or a clinician who has received training to deliver care that is culturally safe. These models of care may be delivered through an Aboriginal medical service (AMS) or an Aboriginal Community Controlled Health Organisation (ACCHO).
Your clinician should discuss the different models of care that are available to you, and ask you about your preferences, including your cultural and language needs. They may suggest certain models of care if your pregnancy is considered high risk for any reason. The clinician providing most of your pregnancy care should also know when to seek other expert advice that may help you.
Early in pregnancy, a woman is informed about stillbirth as a potential outcome. Throughout the pregnancy, she is supported to adopt strategies that may reduce her risk of stillbirth, including smoking cessation, using a side going-to-sleep position from 28 weeks gestation and being aware of fetal movements.
What this means for you
Although there is only a very small chance of stillbirth, you should be informed about the possibility. Sadly, not every stillbirth can be prevented and, for approximately 20% of all stillbirths, a reason for the loss is not identified.
However, there are some things you can do that may reduce your risk. Your clinician will discuss these with you, according to your specific risks, needs and preferences. Your clinician should also provide you with written information (including online resources) about these strategies, and how they may support you to have a healthy pregnancy and give birth to a healthy baby.
Smoking during pregnancy is a significant contributor to stillbirth.
Quitting smoking at any time during your pregnancy reduces the risk of harm to your baby. However, the earlier you quit smoking during pregnancy, the better for your baby’s health.
Your clinician will ask if you, your partner or other members of your household smoke, and provide advice and support to stop smoking. They should offer to refer you or your partner to support services that can help you to quit smoking, such as Quitline. This is a free telephone counselling service staffed by counsellors who are specifically trained in supporting people to quit smoking, including pregnant women.
Going to sleep on your side from 28 weeks of pregnancy
After 28 weeks of pregnancy, going to sleep on your back can increase your risk of stillbirth.
Going to sleep on your side (whether right or left) from 28 weeks of pregnancy can halve your risk of stillbirth compared with going to sleep on your back. Lie on your side any time you go to sleep, including daytime naps, at night or when going back to sleep during the night. If you wake up on your back, don’t worry – just settle back to sleep on your side.
Getting to know your baby’s movements
Your baby’s movements during pregnancy are one sign of their wellbeing. Women often describe these movements as a kick, flutter, swish or roll.
Most women will start to feel their baby move between 16 and 24 weeks of pregnancy, and will continue to feel these movements until the baby is born, including during birth. However, there is no set number or pattern of normal movements – this differs between women and between pregnancies.
Your clinician will encourage you to get to know your baby’s movements, and understand what movements are normal and healthy for your baby. They should ask you about your baby’s movements at every appointment, and keep a record of what you discuss with them in your healthcare record.
A woman is offered high-quality ultrasound during pregnancy to assess fetal growth and morphology, and identify stillbirth risks. Ultrasound performance and reporting, and communication of outcomes to the woman, are in line with current best-practice guidelines.
What this means for you
Ultrasounds can be useful for many reasons during pregnancy, including assessing and managing the risk of stillbirth. They can be used to identify whether you are pregnant with more than one baby, whether your baby may have a genetic condition, and check your baby’s growth and development. This information can help your clinician assess whether you have a higher risk of stillbirth, and how to best plan your ongoing care with you.
Ultrasounds should be offered at certain times during pregnancy. Your clinician will explain the reasons for these ultrasounds, what they may reveal about your or your baby’s health, and the recommended timing for the scans.
You should be supported to make informed decisions about any ultrasound that is offered to you during pregnancy. Your clinician can give you information about these ultrasounds and answer any questions. Information should be given in a way you can understand it. You can choose to proceed with, or decline, any ultrasounds that are offered to you, depending on your needs and preferences. Your decisions should be respected by those involved in your care.
Your clinician may recommend a number of ultrasounds during pregnancy, as listed in Table 2. These ultrasounds can give you information to help you to make decisions about your pregnancy care and to manage risks wherever possible.
Your clinician will discuss the results of your ultrasounds with you, and let you know if any further actions are recommended, such as further scans to check on your baby’s wellbeing.
With your permission, the results of your pregnancy ultrasounds should be shared with other clinicians involved in your care, including any findings that need follow-up.
You should expect that any ultrasound you have during pregnancy is performed by clinicians who are appropriately trained and qualified. Ask your clinician to recommend where you should have your ultrasound.
If you are concerned that you cannot pay for an ultrasound during pregnancy, it is a good idea to let your clinician know, as they may be able to help you access services that provide ultrasounds at a reduced cost.
If you live in a rural or remote area with limited access to ultrasound services, you and your clinician will need to discuss suitable options for your care, and plans to facilitate your access to the care you need.
Table 2: Ultrasounds that may be recommended during pregnancy
This ultrasound is recommended for women who are unsure of their conception date. It is usually performed between 8 and 14 weeks of pregnancy.
It is used to work out the age of your baby (also called ‘gestational age’) and approximately when your baby is due (due date). This helps your clinician plan the best timing for other scans and care that may be needed during your pregnancy.
It is also used to check whether you may be pregnant with more than one baby, which may increase the risk of stillbirth, especially if the babies are sharing the same placenta.
Nuchal translucency scan
This ultrasound is offered to pregnant women in addition to a blood test to help identify the likelihood of their baby having a genetic condition such as Down syndrome, which may increase the risk of stillbirth. Together, this ultrasound and the blood test are referred to as a ‘combined first trimester screen’.
The ultrasound is performed between 12 and 14 weeks of pregnancy. It measures the thickness of a fluid layer that is found under the skin of your baby’s neck – this is called the nuchal translucency.
The blood test is performed between 9 and 14 weeks of pregnancy. It is used to check the levels of hormones found in your blood that may indicate an increased likelihood of your baby having a genetic condition.
Mid trimester fetal morphology scan
This ultrasound is usually performed between 18 and 20 weeks of pregnancy. It is used to check your baby’s growth and development, and identify factors that may indicate an increased risk of stillbirth, such as your baby growing more slowly than expected.
In some cases, this scan may also identify concerns about your baby’s health or development.
Your clinician will talk with you about other tests that can be considered to help identify your baby’s likelihood of a genetic condition. These include non-invasive prenatal testing (NIPT), which is a blood test that examines small pieces of genetic information (DNA) released from the placenta as your baby grows, and can be performed from 10 weeks of pregnancy. The costs of NIPT are not currently covered by Medicare or private health insurance in Australia.
Your clinician will talk with you about the potential benefits and risks of these tests, and answer any questions you may have.
If you choose to proceed with NIPT, you may not require the nuchal translucency scan, because NIPT will be carried out earlier and covers some of the same genetic conditions as a combined first trimester screen. Your clinician will discuss the ultrasound options available to you in this case, including the option to have an ultrasound between 11 and 13 weeks of pregnancy to check how your baby is developing.
A woman who contacts her clinician or health service with concerns about a change in the frequency, strength or pattern of her baby’s movements is offered timely assessment and care according to the Decreased Fetal Movement Care Pathway developed by the Centre of Research Excellence in Stillbirth and the Perinatal Society of Australia and New Zealand, or a locally approved alternative.
What this means for you
During pregnancy, your clinician will encourage you to get to know your baby’s movements, and understand what movements are normal for your baby.
If you notice a change in your baby’s normal pattern of movement, this could be a sign that they are unwell. This may include a change in the strength of your baby’s movements, how often they are moving (such as a decrease in movement) or their usual pattern of movement (such as being active at bedtime).
If you are concerned about a change in your baby’s movements, contact your clinician immediately – you are not wasting their time. Your clinician will take your concerns seriously and may ask you to visit them, or your nearest hospital or maternity health service, as soon as possible for assessment.
You should not delay visiting your clinician, nearest hospital or maternity health service if advised to do so, or if you cannot contact them by phone. You should not wait until the next day to seek assistance if you have concerns about changes in your baby’s movements, even if these changes have occurred at night-time. Often, there is no problem, but you are doing the right thing by checking.
Advice to stimulate your baby’s movements by having something to eat or drink is not correct – it is best to check with your clinician about any concerns. When you arrive at the health service, your clinician will ask you questions about what is concerning you, and will check your baby’s heartbeat. Depending on your individual circumstances (such as stage of pregnancy), they may perform extra tests to check on your baby’s wellbeing, such as:
Asking about your baby’s normal movements
Completing a fetal heart trace (sometimes called cardiotocography or CTG)
Measuring your baby’s growth
Performing an ultrasound scan on your baby (on the same day or the next day)
Performing other tests, such as taking a blood sample from you.
Your clinician will discuss the findings of these tests with you. If they have concerns about your baby’s wellbeing, they will provide you with advice about any further actions that are needed.
With your permission, your clinician will share this information with other clinicians involved in your care. This will help to ensure that they can develop a follow-up care plan according to your needs.
You should not hesitate to contact your clinician again if you have further concerns about your baby’s movements another time, even if this is on the same day.
A woman is provided with information that enables her to make informed decisions about timing of birth, in line with her individual risks and preferences. Whenever a planned birth is being considered, including when there are concerns about maternal or fetal health, the potential benefits and harms are discussed with the woman and documented appropriately.
What this means for you
The ideal time for most babies to be born is as close to 40 weeks of pregnancy as possible. For most women, this means waiting for labour to begin on its own. However, if there are concerns about the health of a woman or her baby, including the risk of stillbirth, a planned birth is sometimes considered. This means timing the birth on a specific date, through induction of labour or caesarean section.
Even when a planned birth is recommended, there are benefits in continuing the pregnancy for as long as it is safe and possible to do so.
Unless there is a clinical reason to do so, birth should not be planned before 39 weeks of pregnancy – this is called an early planned birth. This is because research shows that every week that a baby can remain safely inside their mother’s womb towards 40 weeks of pregnancy improves the health and developmental outcomes for the baby, in the short and long term.
Early in pregnancy, your clinician will have a discussion with you about timing of birth. They will explain the benefits of your pregnancy continuing for as long as it is safe for you and your baby, and they will discuss your preferred preliminary birth plan with you. You should expect that any information discussed with you about timing of birth will meet your language needs. Your clinician will offer to arrange access to an interpreter to support these discussions, if required.
Towards the end of your pregnancy (close to 36 weeks of pregnancy), your clinician will have another discussion with you about timing of birth. This discussion may happen sooner if your clinician has any concerns about your or your baby’s wellbeing. The discussion should consider any changes to your level of risk during the pregnancy, and your personal preferences about timing of birth.
For some women, the risk of stillbirth may be greater than the risks associated with an early planned birth. Your clinician should support you to understand any risks for your pregnancy, and provide you with verbal and written information about the potential benefits and harms for you and your baby.
The risk of stillbirth also increases for pregnancies that continue for 42 weeks or more – this is called a prolonged or post-term pregnancy. If labour has not started on its own by 41 weeks of pregnancy, a planned birth may be recommended to help reduce the risk of stillbirth.
Whenever a planned birth is suggested, you should expect to receive verbal and written information about the potential benefits and harms for you and your baby. Your clinician should support you, your partner and other support people to make informed decisions about timing of birth, and include information about any changes to your agreed timing of birth in your healthcare record.
If you live in a rural or remote area with limited access to health care, your clinician will discuss how this may affect your timing of birth plans, and any particular considerations or arrangements that may be required to support your decisions.
When a stillbirth is diagnosed, the availability, timing and anticipated value of clinical investigations, including autopsy, are discussed with the parents. The parents are supported to share their views about factors they perceive may have contributed to the stillbirth, including aspects of the woman’s clinical care. This information is documented and considered alongside the agreed clinical investigations, and as part of local perinatal mortality audit or incident investigation processes.
What this means for you
After a stillbirth, several clinical investigations can be performed to help identify what may have contributed to the death of your baby. For many parents, this information can be an important and helpful part of living with the loss of their baby. It may also help you, your support people and clinicians with decisions about your care if you want to become pregnant again in the future.
Your clinician will speak with you and your support people about the clinical investigations that can be considered. As this can be a challenging subject to discuss, your clinician will try to have this discussion at a time that suits you, taking into account your emotional and personal needs during this difficult time. Your clinician will also explain that this discussion can take place through more than one conversation, to provide you and your support people with time to consider the options offered to you, and allow your clinician to address any questions you might have.
You should be offered the opportunity to have an Aboriginal and Torres Strait Islander health worker or liaison officer, cross-cultural health worker and/or interpreter to support this discussion if needed.
Your clinician will also ask you about any personal, cultural or religious preferences or needs that may affect your decisions about the clinical investigations they recommend, and about any concerns you might have. You can involve your family members or other support people, including those who can provide spiritual or religious support, in these discussions if you want to.
Your clinician will only perform clinical investigations – for you or your baby – with your permission. For some investigations (such as autopsy), written permission is required; for other investigations (such as blood tests), your clinician will seek your verbal permission. You should be given the time you need to consider, and make decisions about, any investigations that are discussed with you.
Your clinician should explain:
What contact you can have with your baby before and after the investigations
What the investigations may identify
What the investigations involve and where they will take place
How long the results will take
How you will be informed about the progress and results of the investigations
Who you should contact if you have any questions
That you can change your mind about proceeding with any investigation you have agreed to, up until the time it takes place.
Clinical investigations for mother and baby
After a stillbirth, your clinician may recommend some clinical investigations for the mother, such as taking a detailed history of the pregnancy and blood samples. They will also recommend examining the placenta and umbilical cord. Some women may have particular preferences about what happens to the placenta – for example, some women may wish
to bury the placenta. Your clinician should ask you about your preferences and support your decisions.
Your clinician will also discuss clinical investigations for your baby. They will explain that your baby will always be treated with care and respect during any investigations. You will also be able to spend time with your baby before and after any investigations are completed, if you would like to do so.
Investigations for your baby may include:
Completing an external examination, and taking photographs of your baby
Performing an autopsy (also known as a ‘post-mortem examination’), where a pathologist who specialises in babies and children will complete an external and internal examination of your baby’s body
Examining or taking small samples from only certain parts of your baby’s body (also known as a ‘limited’ or ‘minimally invasive’ autopsy)
Taking scans of your baby using imaging such as X-ray, ultrasound or magnetic resonance imaging (MRI, which gives a detailed internal image of your baby).
Your clinician will provide further information about these investigations and support you to make decisions that you feel are best for you and your baby. This is regardless of whether you choose to proceed with all of the recommended investigations; some investigations, but not others; or no investigations at all.
Sharing your perspective
You should also be offered an opportunity to discuss anything that you think may have contributed to the stillbirth of your baby, including any aspects of your pregnancy care. Your clinician will explain that this discussion can occur whenever you feel ready, and that the information you provide will be discussed with sensitivity and respect at all times. You can choose to have this conversation with another clinician if you do not feel comfortable sharing this information with the clinicians who were directly involved in your care. The support people of your choosing can also be involved in these discussions.
The information you provide should be taken into account, along with the results of any clinical investigations you choose to have. Your perspective should also be considered as part of standard review processes conducted within the hospital to identify factors that may have contributed to the death of your baby (sometimes called mortality audits or incident investigations).
The results of stillbirth investigations are reported in a timely manner, documented appropriately and discussed with the parents, along with any information they have provided about perceived contributing factors. The stillbirth is reviewed as part of a local perinatal mortality audit process, classified according to the Perinatal Society of Australia and New Zealand classification system, and outcomes are used to inform local improvements in care.
What this means for you
Clinical investigations that you have agreed to following the death of your baby will be carried out by specialist clinicians. These clinicians will also review and interpret the results. In most cases, a pathologist who specialises in causes of death for babies and children will write a detailed report on the results.
Discussing clinical investigation results
When the results are available, a clinician who understands your case will arrange a follow-up meeting with you and your support people to discuss the results. You should be offered the option of participating in this meeting via telehealth, especially if you live in a rural or remote area, or cannot easily meet in person. Because the results of some clinical investigations can take longer than others, your clinician may not have all the results available at this first meeting, and further meetings may be required.
You should expect that your clinician will discuss clinical investigation results with you in a caring, sensitive and culturally safe way. You should also be offered the opportunity to have an Aboriginal and Torres Strait Islander health worker or liaison officer, cross-cultural health worker and/or interpreter to support this discussion, if needed.
During this discussion, your clinician will consider any information that you and your support people have shared about factors you think may have contributed to the death of your baby. Your clinician will discuss the information you have provided, with sensitivity and respect at all times.
If more specialist clinical expertise is needed to explain what the results mean, or if more tests are needed, your clinician will discuss this with you and arrange relevant referrals. Where appropriate, this should include the option of discussing the results via telehealth, especially if you live in a rural or remote area, or cannot easily access the necessary clinical expertise.
Information you should expect to receive
Your clinician will provide you with a summary of information about your pregnancy and the death of your baby. This should include a record of the results of the investigations (including whether a cause for your baby’s death was found), and any recommendations about how this might affect your plans to become pregnant again. They should also let you know how this information has been documented in your healthcare record.
It is important to be aware that, although investigations can sometimes provide information about what may have contributed to the stillbirth, reasons for the baby’s death cannot always be found.
Hospital review processes – perinatal mortality audits and reviews
After a stillbirth occurs, many hospitals will complete a formal review of the care provided to the mother and baby, to help understand the events leading up to the death of the baby. This process is called a ‘perinatal mortality audit’ or ‘perinatal mortality and morbidity review’. As part of this process, the results of any clinical investigations you have agreed to, and any information you have provided about potential contributors to the loss, are carefully considered by the clinicians involved in your care. Because the results of investigations will not be available straight away, it may take some time for this process to be fully completed.
Your clinician should let you know if there were any aspects of your pregnancy care that may have contributed to the death of your baby. Although stillbirth cannot always be prevented, if aspects of your care that may have contributed to your stillbirth are identified, you should expect to receive an apology, be offered an opportunity to share your views on what happened, and be provided with an explanation of how the incident happened and the steps being taken to prevent it from happening again. This process is known as ‘open disclosure’ and may involve more than one meeting
Sharing investigation results
With your permission, your clinician should share information about the death of your baby with other clinicians involved in your care, including your GP and/or your Aboriginal Community Controlled Health Organisation or Aboriginal Medical Service. This should include information about your pregnancy, the findings of the autopsy or any other investigations completed, and recommendations for your future care.
To ensure that parents and their support people receive appropriate bereavement care and follow-up after a perinatal loss, to support their physical, emotional and psychological wellbeing. To ensure that appropriate referral pathways and supports are in place after discharge from the hospital.
What this means for you
The death of a baby is a devastating and difficult experience for parents, their families and support people. This is regardless of when the death has occurred, or the reasons for the death.
When you experience the death of a baby, or are told that your baby will not live long because of a life-limiting condition, you will be offered care to support your physical, emotional, psychological and spiritual wellbeing. Your clinician should ask you about your personal, cultural and religious or spiritual needs and preferences during this time, and support your decisions about the care you receive.
You should expect that any information your clinician shares with you (verbal or written) is provided in a way that meets your language and literacy needs. If needed, your clinician will offer to arrange an interpreter to support your discussions.
If your baby has died before birth
When it is recognised that your baby has died before you give birth, your clinician will have a discussion with you about next steps. This may include arranging for you to give birth through induction of labour or caesarean section, if you are not already in labour. All pain relief options for labour and birth will be discussed with you, and you will be given time to make up your mind. Your clinicians will also understand that you may change your mind, and will provide care that best supports you and your individual situation.
After the birth of your baby
The care that is provided to you after your baby is born should be sensitive to your needs. This may include your clinician:
Arranging to have discussions with you in a private, quiet area that is separate from other mothers and newborn babies
Letting other staff members who are caring for you know that your baby has died
Involving family members or other support people of your choice in helping you to make decisions about your care
Ensuring that you are given time to spend with your baby following the birth, in a private space.
Your clinician should also offer you access to an interpreter, Aboriginal and Torres Strait Islander health worker or liaison officer, or cross-cultural health worker, depending on your needs.
You should also be given a chance to organise mementos of your baby, if this is something you would like to do. This may include things such as:
Taking photos with your baby
Keeping a lock of your baby’s hair
Having your baby’s handprints and footprints taken
Creating cot cards or name tags for your baby
Arranging meaningful rituals such as a memorial service or other mourning rituals with the assistance of spiritual support people.
If you would like to take your baby home, or to another place that is important to you, your clinician will discuss the options that are available with you.
You can also receive practical support with any arrangements to do with the death of your baby. This may include making or cancelling appointments; completing documentation, including birth registration paperwork; and receiving suitable supports after you leave the hospital. Your clinician should provide you with information about arranging a commemorative service, funeral or other mourning rituals for your baby if you wish, and support you to make an unhurried decision. They can also provide you with information about your eligibility for financial support, where available.
The clinicians involved in your care should answer any questions that you may have about your care, and give you and your support people the time that you need to make decisions.
Your physical and mental wellbeing after perinatal loss
Your clinician will also discuss ways to support physical recovery after giving birth. This may include providing information and advice relating to breast milk production (lactation), vaginal bleeding, wound care and physical activity. Some women may prefer to stop their body from making breast milk by using medication, while others may choose to continue lactating and/or donate their breast milk through a milk bank (where available) to help another family. A postnatal check with a GP or obstetrician within six weeks of birth will be recommended. You should let your clinician know if you have any questions, and expect to be supported to make decisions about your care that are right for you.
Before leaving the hospital, you should expect to be given the details of someone you can contact if you have any questions or concerns after discharge.
Your clinician may also discuss the impact the death of a baby can have on your mental health and wellbeing. It is normal to feel grief and sadness after the loss. For some parents, these feelings can become worse over time, or mental health issues may arise. Your clinician should give you information about support services that are available outside the hospital, including bereavement care, other parent support organisations or psychological support services. Your clinician can arrange formal referrals to these services, with your consent.
Your clinician should also acknowledge the grief that other members of your family or support people may be experiencing, including the baby’s grandparents and siblings. They will explain that it is important for them to speak to someone if they require support, and discuss what support services are available for them.
Support after leaving the hospital
Your clinician will offer you a follow-up meeting within 12 weeks of leaving the hospital to check on your physical and emotional wellbeing. This will include discussing the results of clinical investigations, if available, including anything that may affect your decisions about future pregnancies. As some parents may require support beyond this time, your clinician will discuss available options for ongoing support, depending on your needs and preferences.
Your clinician will also refer you to your GP for follow-up care and support. With your permission, your clinician will share information about your baby’s death with your GP promptly, including the circumstances surrounding the death, and recommendations to support your physical, emotional and psychological wellbeing. They can also arrange referrals to clinicians with specific training and expertise in bereavement care for pregnancy loss, such as a psychologist or qualified social worker, if this is something you would prefer.
During a subsequent pregnancy after a perinatal loss, a woman receives antenatal care that recognises factors that may have contributed to the previous loss, and ensures that she has access to appropriate clinical expertise and psychosocial support, as required
What this means for you
Pregnancy or planning for pregnancy can be very stressful if you have experienced the death of a baby before. It is important that you speak to your clinician before you become pregnant or early in pregnancy to discuss any concerns you may have. Your clinician can then work with you to discuss and develop a plan for your pregnancy care and birth.
Your clinician may recommend more frequent appointments, or extra obstetric ultrasounds and other investigations, to monitor your and your baby’s health and wellbeing during pregnancy. This is because studies show that women who have experienced a perinatal loss, such as a stillbirth, have a higher risk of another loss during a subsequent pregnancy.81 This risk may depend on what caused the previous perinatal loss, if this is known.
Some studies have shown that women benefit from regularly seeing the same clinician or group of clinicians (sometimes called ‘continuity of carer’) for pregnancy care, especially women who have had a perinatal loss. In Australia, continuity of carer can be provided by GPs, a midwife or group of midwives, obstetricians or Aboriginal and Torres Strait Islander health workers. When you become pregnant, your GP (or other regular care provider) should talk with you about the different types of pregnancy care available to you, and ask you what you would prefer.
The clinician providing your pregnancy care will consider the results of any investigations completed after your previous loss. If a cause for your previous loss was found, this may affect your subsequent pregnancy care, and in some cases can help you and your clinician reduce your risk. For example, depending on the cause, your clinician may recommend that you take certain medications or have extra monitoring during your pregnancy.
It is common for parents and their support people to feel anxious or worried during a pregnancy after a perinatal loss. Your clinician will ask you about any concerns that you have and offer you access to psychosocial and other support services, in line with your needs and preferences. You can also ask your clinician for a referral to these support services at any point during your pregnancy, if your needs change.
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