Rainbow Baby Week

Dr Beth Malory, University College London 

 

Losing a baby at any stage of pregnancy can be devastating, frightening, confusing, and isolating. At a time when people need clear information and compassionate care, the words used by healthcare professionals, friends, family, and support services can make a real difference.

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Alia (not her real name) conceived via IVF after years of trying. She saw her baby’s heartbeat at an early scan before being discharged from the fertility clinic. After this scan, she and her partner started calling their baby “Bean”. Two weeks later, Alia had some bleeding and was referred to her local Early Pregnancy Unit. There, she was told matter-of-factly that there was no heartbeat and measurements were not consistent with her embryo transfer date, but that this would need to be confirmed at a later scan. An agonizing twelve days later, Alia and her partner returned to be told the “good news” – they could go ahead with surgery to remove the “products of conception” and get the pregnancy “over with”.  

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Since 2020, I have been leading research to understand how language and communication affect people’s experiences of receiving care for losses during pregnancy in the UK. Sadly, this has meant listening to hundreds of experiences as upsetting as Alia’s, as well as lots of healthcare professionals’ perspectives. 

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One thing has come through very clearly: language matters. The right words can help people feel seen, supported, and understood. The wrong words, especially at moments of shock or trauma, will stay with people for years.

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Throughout this article, I use the term pregnancy loss because my research suggests that it is one of the most broadly acceptable terms. But this is not to say that it will feel right for everyone. Some people prefer baby loss, miscarriage, stillbirth, my baby died, or another phrase entirely.

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One of the most important findings from my work is that there is no single perfect term. What matters most is that people are given space to use the words that reflect their own experience and needs.

 

How language can affect people after pregnancy loss

Many of the people who took part in our research told us that certain words used in healthcare made them feel blamed, dismissed, confused, or as though their grief was not being recognised.

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Some terms were described as too ‘cold’ or ‘clinical’. These included phrases such as products of conception, fetal demise, or pregnancy tissue. For some people, these words felt detached from the reality of what they were going through. They did not feel like neutral medical terms; they felt like language that erased their baby, their pregnancy, or their grief.

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Other terms were experienced as invalidating. For example, some people found phrases such as chemical pregnancy or empty sac distressing because they felt these words suggested that the pregnancy had not been real, or that there was nothing to grieve. 

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Some terms were felt to imply blame. Words such as miscarriage, missed miscarriage, and incompetent cervix were difficult for many participants because they seemed to suggest that the person’s body had failed, missed something, or done something wrong. When so many people already blame themselves after pregnancy loss, even when there is nothing they could have done to prevent what happened, this is especially damaging.

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Participants also told me that language sometimes failed to reflect the physical and emotional reality of their experience. For example, someone giving birth in the second trimester may find the phrase passing the pregnancy or passing baby deeply inadequate if they experienced labour, birth, and the death of a baby they held and named.

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For others, the difficulty was not one specific word, but a sudden change in language. Some participants described healthcare professionals using baby during a scan or appointment, and then switching to fetus, pregnancy tissue, or products once the baby had died. This shift felt shocking and dehumanising.

 

Everyone’s preferences are different

Although some terms were widely disliked, my research also showed that people’s preferences vary. A word that comforts one person may hurt another.

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This is why sensitive care cannot rely on a fixed list of “good” and “bad” words. A better approach is for healthcare professionals to listen carefully, notice the words someone uses, and follow their lead. Where possible, they should ask directly and respectfully what language will be helpful for you.

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A simple question can make a difference:

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“Do you know what language you would find helpful when we talk about what’s happening?”

 

What you can do to advocate for yourself

It should never be the responsibility of grieving people to make healthcare communication compassionate. The responsibility sits with healthcare services and professionals and we need systemic change to recognise this. But in the meantime, I heard from participants that being able to state their preferences, ask questions, or correct language sometimes helped them feel more in control during an extremely difficult time.

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If you are experiencing pregnancy loss, or receiving care after a previous loss, including during a pregnancy after loss, you are allowed to ask for language that feels right for you.

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You might say:

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“Please refer to my baby, not products of conception.”

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“I prefer the term pregnancy loss rather than miscarriage.”

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“Please don’t use the phrase incompetent cervix. Is there another way you can explain what might have happened?”

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“I find the word termination difficult. Can you explain what you mean in a different way?”

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“I don’t want to use the word baby. Please say pregnancy instead.”

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“I’m finding this language upsetting. Can we pause for a moment?”

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You can also ask for difficult medical language to be explained before you read it in letters, notes, discharge summaries, test results, or postmortem reports. Some people find clinical documents very distressing, especially if they include terms they have not been prepared for.

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You might say:

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“Before I read this report, can someone talk me through the language that might be upsetting?”

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“Can I have an appointment with someone who can explain these results to me?”

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“Is there a bereavement midwife, specialist nurse, counsellor, or consultant who can go through this with us?”

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If you are worried that you will not be able to say these things in the moment, it may help to write your preferences down in advance or ask a partner, friend, family member, or advocate to speak on your behalf.

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For example, you could write:

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“I would like staff to refer to my baby as [name]. I do not want the phrase [term] used when speaking to me. If clinical terms need to be used, please explain them clearly and gently.”

 

Asking for clarity is part of your care

During pregnancy loss care, people often receive complicated information while they are in shock. It is common not to take everything in the first time. It is also common to feel unable to ask questions.

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You are allowed to ask the same question more than once. You are allowed to ask someone to slow down. You are allowed to ask what a diagnosis means, what your options are, what will happen next, and what support is available afterwards.

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Useful questions might include:

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“What does that term mean?”

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“What has happened to my pregnancy or my baby?”

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“What are my options now?”

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“What will happen physically?”

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“What symptoms should I expect?”

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“What should I do if I am worried?”

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“What emotional support is available?”

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“Who can I contact after I leave hospital?”

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“Can you explain this without using abbreviations?”

 

Clear communication is not an optional extra. It is part of safe, compassionate care.

 

When language causes harm

If something said to you during care has stayed with you, upset you, or made your grief harder to process, you are not overreacting. Many people in my research remembered exact words years later. Many also described language as part of the trauma of their loss.

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You may want to raise this with the service that cared for you. This could be through a bereavement midwife, specialist nurse, consultant, GP, hospital feedback system, or Patient Advice and Liaison Service, often known as PALS. You can also ask a charity or support organisation to help you think through what you want to say.

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Feedback does not have to be formal. It might be as simple as:

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“I want staff to know that the phrase used during my care was very distressing. I would have preferred someone to ask what language felt right for me.”

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Or:

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“Please consider adding language preferences to patient notes, so families do not have to keep correcting staff.”

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Not everyone will want to give feedback, and no one should feel pressured to do so. But for some people, naming what happened can be part of making sense of their experience.

 

Language during pregnancy after loss

The impact of language does not necessarily end when pregnancy loss care ends. For many people, the words used during a loss, and in talking about it later, shape how they feel going forwards. This includes throughout care during any subsequent pregnancy.

Pregnancy after loss can bring hope, but it can also bring fear, grief, anxiety, and a heightened need for reassurance. Language that was painful during a previous loss can make it harder to feel safe in care later on. For example, someone who was told their baby was “products of conception” may feel anxious about whether a new healthcare team will recognise their previous baby as a baby.

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Someone who was told they had an “incompetent cervix”, or a “failed pregnancy” may carry that sense of feeling blamed into future pregnancies. Someone whose grief was minimised because their loss was “early” may worry that their concerns will be dismissed again.

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Terms used around pregnancy after loss can also be complicated. Some families like the phrase rainbow baby and find it hopeful or meaningful. Others dislike it, because it can feel as though the new baby is being framed mainly in relation to the baby who died, or as though the grief of loss, “the storm” has been tidily resolved or forgotten. For some, a subsequent pregnancy is not simply a happy ending. It is a pregnancy lived alongside memory, fear, love, and grief.

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Again, this shows clearly how much individual preference matters. In pregnancy after loss, healthcare professionals, family members, and friends should avoid assuming that terms such as rainbow baby or golden baby will feel comforting. Some people may use these words; others may prefer pregnancy after loss, this pregnancy, this baby, or using their baby’s name.

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You are allowed to ask for the language that feels right for you in a subsequent pregnancy too. You might say:

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“Please don’t call this baby my rainbow baby. I prefer to say pregnancy after loss.”

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“I do use the phrase rainbow baby, and I’d like you to use it too.”

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“Please refer to my previous baby by their name.”

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“Please don’t describe this as a fresh start. I will not ever stop grieving my baby.”

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“I need reassurance, but please don’t tell me everything will be fine unless you can explain why.”

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“Please remember that scans are frightening for me because of what happened last time.”

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This kind of communication matters because pregnancy after loss can rarely be separated from the earlier loss. The previous experience often comes into the room with the person: in their notes, in their body, in their anxiety, and in the words they can or cannot bear to hear.

 

What healthcare professionals can do

Our recommendations for healthcare professionals are simple, but crucial – and they apply not only during pregnancy loss itself, but also in follow-up care, future appointments, and pregnancy after loss.

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Listen to the words the person uses. If they say baby, use baby. If they use their baby’s name, use the name. If they say pregnancy, follow that. If you are unsure, ask.

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This is especially important in pregnancy after loss, where words connected to a previous loss may shape how safe, heard, and supported someone feels in their current pregnancy.

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Avoid assuming that one term will be right for everyone. Avoid unnecessarily cold or technical language in conversation. Where clinical terms are needed, explain them clearly and compassionately. 

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Most importantly, remember that language is not separate from care. It is care.

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Sensitive communication can help people feel that their experience, their grief, and their baby or pregnancy are being treated with dignity. Insensitive communication can make an already painful experience harder.

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Learning more

We have developed a short, CPD-accredited online course, Effective Communication for Pregnancy Loss Care, with the support of several charities, including Tommy’s, Sands, The Miscarriage Association, and Petals.

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The course shares research findings and practical recommendations for healthcare professionals and others who support people during and after pregnancy loss. If a healthcare professional, hospital team, GP practice, or support organisation wants to improve how they communicate about pregnancy loss, this course is one resource you can suggest to them.

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Language cannot take away the pain of pregnancy loss. But it can reduce confusion, avoid unnecessary harm, and help people feel recognised at one of the most vulnerable moments of their lives.

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For more information, you can contact:

Dr Beth Malory, Associate Professor in English Linguistics and Health Communication, University College London
Founder of the Reproductive & Sexual Health Communication Alliance

Email: b.malory@ucl.ac.uk
Instagram: @drbethmalory

Dr Louise Nuttall

Postdoctoral Research Assistant at University College London. Email: l.nuttall@ucl.ac.uk

Instagram: @drlouisenuttall