Most parents want to know more about why their baby has died. Sadly, we don’t always know the reason why babies die and more research is needed. But a post-mortem may be an option for you if you would like to try to find out more about why your baby died. Other tests include examination of the placenta, tests of baby’s chromosomes and blood tests for the mum/birthing person. These should all be discussed with you after you baby dies.
What is a post-mortem?
A post-mortem, or autopsy, is when your baby’s body is examined to try to find a cause of death. The procedure can involve examining your baby's organs in detail, looking at blood and tissue samples, and carrying out genetic testing to see whether your baby had a genetic disease.
After your baby is born, you’ll be asked if you would like your baby to have a post-mortem examination. It can be very hard to think about a post-mortem examination for your
baby so soon after the birth. Sands has produced a helpful leaflet for parents who are deciding whether or not to have a post-mortem.
You’ll need to give your written permission (consent) for a post-mortem. The healthcare professional asking for your permission should explain the different options available to help you make a decision.
Before deciding whether or not to have a post-mortem, it’s important to remember that unfortunately, in some cases a baby’s post-mortem doesn’t show a clear cause of death. According to one study in 2016 of 1064 pregnancies, around 60% of stillbirths are unexplained.
However, a post-mortem may rule out what didn’t cause the death. And as well as giving you important information about why your baby died, it may also give you information that may be particularly important if you plan to become pregnant in the future.
Post-mortems are the gold standard of investigation and can reveal important information. But in many cases, there are other ways of investigating what happened, such as:
- non-invasive tests – such as a clinical examination or using an MRI to scan the baby (only available in some hospitals)
- blood tests from the parents, which might reveal an underlying condition
- testing for infection through urine, blood or cells from the vagina or cervix from the mum/birthing person
- specialist examination of the placenta, umbilical cord and membranes
- genetic tests carried out on a small sample of the umbilical cord.
The healthcare professional asking for your permission should explain the different options to help you decide whether you want your baby to have a post-mortem.
Who does the post-mortem?
A perinatal or a paediatric pathologist, who is a specialist doctor with expertise in identifying conditions in babies, carries out the post-mortem. Just like all doctors, they are bound by a strict code of conduct, and will treat your baby with respect at all times.
Post-mortems are carried out very respectfully and sensitively. You can usually keep soft toys and blankets with your baby if you want to. And you will be able to see your baby until the post-mortem, and even afterwards if you wish.
The incisions are kept as small as possible and the baby’s face, arms, legs, hands and feet are usually unaffected. When a baby is carefully wrapped in clothes, a hat or a blanket, the marks from the post-mortem are unlikely to be visible.
Should I have a post-mortem after a stillbirth?
You will be asked whether you want a post-mortem shortly after your baby is born. Unless it has been requested by a coroner or procurator fiscal, it is your decision, as parents, whether or not to have a post-mortem. If you say yes and consent, you can still change your mind right up until the post-mortem begins.
You may have lots of questions about how and where it is performed, and what the results might tell you. Talk to the midwife and doctors caring for you about your concerns and questions. There is no pressure either way. Unless a post-mortem is ordered by a coroner, it is entirely up to you.
“For us we knew we wanted Arthur to have a post-mortem as we knew we needed to have done everything possible to try and find out why he had died. Although we didn’t get a definitive answer, I still feel we made the right decision.”
Kathryn, who lost her son Arthur. Taken with permission from the book, ‘Life After Stillbirth’ by Sarah Smith.
Although it may be difficult to think about the future right now, if you decide to get pregnant again, there’s a chance a post-mortem might offer some answers on the cause of your baby’s death. This could help doctors treat you in a future pregnancy.
There may be religious reasons for not having a post-mortem. If your baby’s burial needs to happen very soon, speak to your doctors as you may be able to have the post-mortem brought forward.
As well as giving you information about your baby’s death, a post-mortem can also allow researchers to gather information, which goes into research aimed at finding ways to prevent stillbirth future deaths. This may also be important to you, over 40% of parents said that this was one reason they chose to have a post-mortem . Your healthcare professional will talk to you about this before you consent.
What happens during a post-mortem?
There are different types of post-mortem. You can discuss what’s best for your situation with your doctor or midwife, but it is your decision.
A complete post-mortem
This is the most detailed examination. In a complete post-mortem, the pathologist:
- examines the outside of the body for signs of abnormality
- examines all the internal organs
- takes small samples of the organs to look at under a microscope – if the organs are very small, the whole organ might be examined under a microscope
- examines the placenta
- examines tissue and fluid samples, such as blood or urine, for infection.
If you want to know, it may also be possible to find out the sex of your baby.
Afterwards the organs will be carefully returned to your baby’s body, like in an operation.
You can choose to have genetic tests carried out on the tissue samples. The samples can be kept on medical record and can be used for further testing if necessary, or you can choose to have them returned. No samples or tissues will be kept without your consent.
Photographs and x-rays may be taken for medical diagnosis and the medical record.
A limited post-mortem
If you do not want a full post-mortem, you could choose to have a limited post-mortem. This is an examination of certain organs, skin samples, or an external examination of your baby. You can decide which internal organs or areas of the body will and will not be examined. This may be useful if an ultrasound has revealed abnormalities in a particular organ. However, a limited post-mortem won’t necessarily show an underlying condition or other problems.
You might also decide to have an examination of the placenta, where samples are taken to be studied under a microscope. This can provide very valuable information. Hospitals don’t have to ask you for your permission (consent) to examine your placenta, but they should let you know that they intend to do this.
An external post-mortem
This is when the outside of the baby’s body will be examined for any signs of abnormality. You can also choose to have the placenta examined. X-rays and medical photographs are taken and kept as part of the medical record.
In an external post-mortem, internal organs aren’t examined and no tissue samples are taken.
The health professional will be able to explain whether an external post-mortem might be useful. It is possible that an external post-mortem won’t give you any new information about the possible cause of your baby’s death.
Where is the post-mortem done?
Your baby is kept in the mortuary until the post-mortem, which is usually carried out the next working day after your baby arrives there.
You can make arrangements for your baby’s funeral before the post-mortem but possibly not the date of the funeral. Once the examination has been carried out, the hospital mortuary staff should tell you when your baby will be ready to be collected by you or your funeral director. It can take about a week, depending on which post-mortem you decide on.
Some babies are taken to a regional centre where the post-mortem is carried out by a specialist. This can take longer. Your baby is transported carefully and respectfully, usually by a funeral director or transport arranged by the hospital.
If you like, you can dress your baby in special clothes, wrap them in a blanket and leave a special toy or keepsake with them. You will be able to see your baby right up until the post-mortem begins unless they are moved to a regional centre.
“You may want to ask about carrying your baby to the mortuary. This will give you the chance to meet some of the people taking care of your baby while they are in the mortuary.'”
Vicky, specialist bereavement midwife
You could also ask if it’s possible for the mortuary to phone you when your baby arrives for the post-mortem, and to let you know when they have been taken back to the hospital.
How long does it take to get post-mortem results?
It is difficult to estimate how long it will take to get the results of the post-mortem. It will depend on the hospital and the tests you have chosen. But it is usually between 8 and 12 weeks. In some cases, it can be even longer , which can be very difficult for parents. You can speak to your healthcare professional about this.
Getting the results of your post-mortem
When the results are ready, you’ll be asked to come into the hospital for an appointment and your consultant will talk through the results with you. You can ask for a copy of the post-mortem report, but it can be helpful to bear in mind that this is a medical document that is not necessarily written for parents to read.
Here are some suggestions to prepare for the meeting:
- Find out in advance where the meeting will be so you can prepare yourself. For example, it might happen in or near the antenatal clinic.
- Write down any questions before your appointment as you’ll may find it difficult to talk or hard to remember what you wanted to know.
- Think about taking someone with you who can also listen to the information and make some notes.
- You can request a copy of your medical notes if you want.
- Don’t worry about getting upset in the appointment. It’s natural to be emotional and the healthcare team will understand that.
Here are some ideas for questions you may want to ask. We have included just a few suggestions as they will be unique to your situation:
- Could have the issue been detected and if so, why wasn’t it?
- What is the likelihood of us having a stillbirth again?
- Are there any conditions that could affect a future pregnancy?
- Will my care change in a future pregnancy? What risk level will I be treated at?
- Will I be offered extra scans and tests in a future pregnancy?
- How long should we wait before trying to conceive?
- Are there ways for us to manage the risk next time?
- Who can we contact after this meeting if we have any other questions?
This can be a difficult appointment and you may find it hard to take in and remember information. You will be able to book an appointment with your GP, at a later date, to go over everything again if you need to.
Helping future research
Some hospitals carry out research, such as the stillbirth research that Tommy’s funds, into the causes of pregnancy complications and loss. You may be asked for your permission as parents to allow researchers to use the tissue samples and other items that were taken as part of the post-mortem. This can give researchers valuable insights into the pregnancy that may help prevent future losses. You will need to give your consent for this.
Support for you
Going through a post-mortem process can be very emotionally difficult. Support is available to help you. Our midwives are here for you to talk to you if you would like. They will be able to talk to you about what you’re going through. You can speak to them for free on 0808 0147 800, Monday to Friday, 9am to 5pm. Or you can email them on [email protected]