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What is perinatal loss?

The perinatal period covers conception, pregnancy, birth and the early months of life. The term ‘perinatal loss’ is inclusive of unsuccessful IVF; loss of a pregnancy through miscarriage or termination; ectopic pregnancy; molar pregnancy; still birth or death of a baby in early infancy. 

When a baby dies the death is a terrible shock and one of the most devastating experiences a parent can face; it can be extremely difficult to make sense of the loss. Grief can be very lonely and isolating. No two losses are ever the same.

An estimated 10 to 20% of recognised pregnancies end in miscarriage, typically defined as a loss before the 24th week of pregnancy. A further 1% of pregnancies are lost to stillbirth, typically defined as a loss occurring after the 24th week of pregnancy. Perinatal losses are often invisible. Many miscarriages occur early in pregnancy, before the expectant person has told 
friends or family that they are pregnant.

Losing a pregnancy or a baby is a unique grief experience and people can often fail to recognise the impact of the loss for those suffering.

A connection with a baby can start the moment you knew you were pregnant. Love and bonding cannot be measured by the number of weeks or months of pregnancy. No matter when your baby died, you are still bereaved. A unique element of perinatal loss is the loss of hopes and dreams for the future happiness with a new member of the family.

Feelings of guilt or needing to blame others can lead to anger and worry about the cause of death, and parents can replay everything they did or didn’t do over and over in their minds. These feelings of guilt and blame are normal emotional reactions and will lessen with time.

Remember there is no right way to feel after perinatal loss. Try to treat yourself and your experiences with compassion not criticism.

What is grief?

When someone you love dies, the feelings of loss and sorrow can be overwhelming. This is typically referred to as ‘grief’. When a baby dies you may also experience shock and trauma due to the sudden nature of the death. Your emotional reactions may change and fluctuate each day. Whatever
your thoughts and feelings following a loss, grief is a deeply personal experience. There is no wrong or right way to grieve.

Remember there is no set time for grief. Everyone experiences and deals with grief in their own way.

How might perinatal loss have an impact?

Perinatal loss is often described as the worst type of grief. It can feel as though you are just ‘going through the motions’ and are not fully present in your day-to-day life: as if you are an observer or not really emotionally involved or connected to what is happening around you.

Remember you do not need to feel pressured to make decisions for the future and you can take whatever time you need.

Perinatal loss can lead to a range of emotional and physiological reactions:

Grief and loss can be different for everyone but some feelings are very common. You may feel:

  • Shocked and numb; you may find that you feel nothing at all.
  • That the pain is overwhelming.
  • Waves of intense feelings or mood swings.
  • That you keep going over and over events.
  • A sense of failure, shame or inadequacy. You may feel guilty about things which happened before the death, or about how you feel now.
  • Very angry with yourself or others.
  • Strong emotions of longing, sadness, loneliness and sometimes hopelessness and fear about the future.
  • Longer-lasting emotional difficulties and psychological adjustment, such as anxiety, depression, and post-traumatic stress disorder.
  • As if the memories of the event keep coming into your mind when you don’t want them to. Returning to your life and home, where you may have made preparations for your baby may trigger memories of the event.
  • As if you are being disloyal to your baby if you think about plans for future children. Other people may make suggestions about how soon it is advisable to “try again”, which may trigger a range of difficult emotions.

The period after the loss can be confusing. You may be searching for answers to why your baby did not survive. When you have contact with medical services you may want to understand why your baby died, but shock may prevent you from asking questions or absorbing what you are told. It will take time for you to process what has happened, acknowledge what you need to know, and feel able to talk further about what you need to decide for the future. It is important to feel that you can go back and ask questions later.

The intensity of the loss may feel as if it is made worse by biological factors or physiological reactions in your body.

  • You may experience extreme fatigue and tiredness, and a loss of energy.
  • Your sleep may be interrupted, either finding it hard to fall asleep or experiencing night wakings and dreams or nightmares.
  • Your body may still be responding as if your baby was alive. It takes time to recover physically from giving birth and this healing can feel like a cruel reminder of what you have lost.
  • Your body may be in hormonal turmoil and your breasts might be ready to feed your baby.
  • If you have had a caesarean section there will be a wound which needs time to heal, and you may be feeling confused and surreal due to the anaesthetic.
  • Your body may react to physical reminders of the event, such as returning to the hospital for medical check-ups.

As well as the psychological impact, you may have experienced a physical trauma. Physical injuries may include damage to the pelvic floor or perineal area. These may require expert medical advice and assessment. Don’t be afraid to ask questions and seek medical attention.

If your loss happened some time ago and you are now pregnant again you may find that the emotions and memories from the previous loss resurface. This can cause intense feelings of grief, anxiety and low mood. You may find yourself worrying about what happened and fear that it could happen again. This can feel scary and overwhelming, and can interfere in your ability to enjoy your pregnancy. You may find that you are restricting your activities as a way to manage and feel safe, but this may lead you to feel isolated and as if you are managing your distress on your own.

Remember a huge variety of emotional and physical reactions and feelings are common after experiencing a loss. These can feel overwhelming and confusing at times, but are a normal reaction to a distressing event. Sometimes it helps to reach out to others who have had similar experiences.

Why is this happening to me?

How you react to the grief can depend on many things:

  • How or when the loss happened
  • Circumstances around the loss
  • Previous experiences
  • Your culture or religion
  • Reactions and/ or support from loved ones

However, you are reacting it is important to remember that you have experienced a traumatic and distressing event and the symptoms you are experiencing are not your fault.

Grief and trauma affect the parts of the brain that control emotion and memory. Memories of trauma and loss are processed and stored differently to memories of other day-to-day experiences. This means that when you experience a traumatic event, your brain needs to work incredibly hard to find a way to ‘manage’ these memories. Sometimes the brain gets ‘stuck’ trying to process and organise these memories. Or sometimes the way the memories have been stored away doesn’t work. These internal processes – which you aren’t usually aware of – can be what leads to the ongoing symptoms of trauma or prolonged grief.

It may be that you haven’t been able to fully piece together all the details of the event and what lead to your loss, your brain may keep ‘popping’ these into your mind; your brain wants to try to piece things together so you can make sense of what happened, to file the memory away again. However, this can be incredibly distressing. You may not want to keep dwelling on events and feel that you want to get on with your life. But the more you avoid memories, the more your brain will work to try to make sense of things, which can lead to feeling stuck in a distressing cycle of traumatic memories and bereavement.

Over time these feelings and memories usually become less intense, but you can’t predict when this may feel easier, or force this to happen sooner.

Remember all of these feelings are normal reactions to a very difficult experience. They are simply a sign that you have not yet been able to process what happened to you. This will take time.

Getting help and support - What can you do about loss and grief?

It is important to acknowledge that you are grieving. Trying to cope with the effects of bereavement is extremely hard, and you may need to try different strategies to manage how you are feeling. Below are a few suggestions:

  • Treat yourself gently and take one day at a time.
  • Give yourself permission and time to grieve.
  • Don’t feel guilty or weak if you’re struggling to cope, or need help.
  • Try to eat properly and get enough rest (even if you can’t sleep).
  • Sometimes it helps to develop a new routine of eating, sleeping and connecting with others.
  • Try to exercise. Even a short walk to get some fresh air can help.

  • Stay connected to people you care about and trust, and ask for their help.
  • Find someone who will listen. Research evidence shows that social support is crucial in coping with grief. Seeing others can be incredibly hard when you feel this way, but finding a way to connect with others can help your recovery.
  • You might also be able to talk to someone in your community, or to a faith or spiritual leader.

Writing down your (birth) story and your feelings in a journal or letters to key people in the process (midwives, partners, doctors) can help make better sense of your experience.

To help adjust to the bereavement, some people find it helpful to maintain a connection with their baby, or find ways to create memories. Things that you could try include:

  • Creating a memory box
  • Creating new family routines
  • Talking about your baby
  • Planting a tree or plant that will continue to grow in their memory.

  • Use techniques that help you stay connected to the present moment. Focus on your senses: what you can see, hear, touch, smell. Notice what is different to where you are in the present to where you were when you experienced the loss.
  • Learn relaxation and breathing techniques to help soothe your body’s threat response.
  • Stand back and observe intrusive thoughts or memories rather than push them away: label them and picture them as external to you. Focus on something that helps you move step away from the intense feelings.

  • Focus on your wellbeing.
  • Think about small things you can do for yourself.
  • Find ways to slowly rebuild your life:
    • What did you used to enjoy?
    • What made you feel good?
    • What have you stopped doing because of your grief?
    • If some activities are difficult because of how you are feeling at the moment, are there any alternatives?
    • Try to start simple, with one or two small specific goals that feel realistic and manageable.

It can be helpful to talk to others who have had similar experiences. You could try:

Most people who experience perinatal loss are slowly able to continue with their lives and find ways to live with the grief. However, if your grief continues to have an impact on your life and you are unable to adjust, extra support may be needed to help your recovery. There is no shame in needing some support. Do not be ashamed in asking for help.

  • Speak to the hospital involved in your care, they may offer a birth reflections or bereavement midwife service to talk through the circumstances around your loss.
  • Psychological therapies can help you overcome your distress. This may include coming to understand that your feelings are normal, and helping you to stop blaming yourself for what you might see as a failure.
  • The practice of mindfulness can help you sit with feelings about the loss, so that those feelings begin to lose their power.
  • Psychologists or psychotherapists can help you identify and participate in activities that bring you joy and a sense of meaning. Those activities can provide positive reinforcement and help ease depressive symptoms.
  • Trauma-focused therapy can work through any Post Traumatic Stress, which may be experienced after loss.
  • You can self-refer to an NHS Talking Therapies service by finding one local to your GP: www.nhs.uk/service-search/mental-health/find- a psychological-therapies-service/.
  • Speak to your GP, Health Visitor or other health care professional to find out what is available, and see if they can signpost or refer you to services.
  • Surrey and Borders Partnership NHS Foundation Trust has a specialist service designed to support moderate to severe mental health difficulties following perinatal loss. Your GP can refer you to this Maternal Mental Health Service: AFLoaT: Addressing Fear, Loss and Trauma relating to your maternity experience.

Further support

It can be helpful to understand more about how perinatal loss affects your brain and body, and why you have the symptoms you do. Some useful sources of information may include:

Sometimes people who have experienced perinatal loss may have thoughts and plans of ending their life or thoughts of self-harming. If you are experiencing these please either:

  • Attend your local A&E department
  • Dial 999
  • Call the Surrey Crisis Line: 0800 915 4644

Remember be kind to yourself; the experience you had was extremely difficult. You are trying to adjust to a life-changing event. This is hard right now, but things can and will improve. It is ok to ask for and accept help to achieve this recovery.