living with uncertainty

No matter the path that has led to this, I’m sorry that you are faced with such uncertainty. The uncertainty of what lies ahead for your family may be a sudden change from the future you were planning, or a possibility you’ve always known may be coming. But humans do best when we know the next step- and right now it seems like all that stretches ahead is a minefield of question marks.

There are no magic wands, and the outcome of this journey does not depend on how hard you love or fairness. You did nothing to deserve being in this place.

This resource aims to give you as a parent some steps to focus on to help you mentally get through this time of uncertainty. While it’s written in an order, you might have already done some of these steps, or feel ready to jump in somewhere other than the start. Read it through, let it digest, and if it feels right for you, get into the steps.


1-      Prepare to feel the feelings

While you have no doubt been feeling all the feelings already, thinking through uncertainty involves getting very frank about the issues that you are facing. Think through ways you’ve felt safe to express yourself in the past. Is it with a professional counsellor or spiritual advisor? A close friend?  In a journal? Ask someone to be nearby who can notice your distress and be a safe space for you.

Think ahead to what calms you-  it might be a hug, a cup of tea, a hammock, a run, or some music you love. Plan to have those things available.  Know that it is ok to be overwhelmed and fall apart- that is an important part of processing these emotions- and that it is also useful to have strategies to calm, for when feeling the feelings gets too much. Letting out your thoughts might be a gradual process, turning the tap on for as long as feels right, and then turning it off again while you recuperate. If you think that you might hurt yourself or others when you feel overwhelmed, that’s a signal to set yourself up with some professional support to go through this process.


2-      Express your worries

The next step is to let your worries out. You may like to write out your worries- either just for yourself or to share with someone you trust- or talk it through with a loved one or professional. If you’ve been trying to keep this all in, this may first come out as an ugly-cry jumble. Rather than try to make it coherent or sound a certain way, first just let it all out.

If you can’t get straight to the words, try noticing where in your body you feel the emotion and what your body wants to do to address it- running, screaming, chanting, squeezing, dancing, and tapping are common sensory experiences that can help to acknowledge where in your body an emotion is sitting. You might like to think about creative ways you express yourself too, through art, music, or dance, as a way of telling your story Some simple art-based activities can be to draw your scream, or draw your worry. Just getting it out in this way can often feel like a release, and you can then reflect on the drawing and what it symbolises to you.

Once you have words for your worries, you may be able to see some underlying themes; What seemed like a hundred different worries may be summarised by just a few core worries. Some may feel very scary to express or to even acknowledge to yourself. Being able to identify and express these can feel like releasing a small part of the distress.


3-      Focus on what you can control

Once you have some language for the parts of what you’re going through, and you’re in the right headspace, you can start to identify which parts are within your control and which parts aren’t.  You might like to use a diagram like this :

Image influenced by Covey’s circles- he calls the outside one ‘Circle of Concern’ Covey, S. R. (1991). The seven habits of highly effective people. Provo, UT: Covey Leadership Center.

‘Outside of my control’ would capture things like the diagnosis, available options, and feelings or actions of other people. ‘Some influence’ would cover some decisions about the way care is delivered and interactions with others, and ‘Within my control’ would capture elements like the values you bring to the decisions, making memories, and treatment decisions within the choices that are available. When you think through where your control lies around your pregnancy, be specific about particular issues that you are facing, and try to put them into these categories. You can then consider your approach to each category.

For components that are outside of your control- for example the diagnosis or concern that has led to this situation- you might have a spiritual or meditative practice that helps you. For example, a visualisation of taking the issue and placing it softly in someone else’s hands, or of taking the weight off of your shoulders and placing it on the Earth, might be helpful. You might find comfort in talking to a higher power and asking them to hold gently and guide this issue.

The other two categories of influence can inform your planning, and help you to focus your attention. If you find yourself spiralling around components that are outside of your control, take a breath, exhale for longer than you inhale, remind yourself of where you’ve let those components rest, and bring your attention to the planning for the parts that are within your control.


4-      Plan A, B, and Z

Planning can help bring back a sense of control and reduce the threat of uncertainty. Some people won’t want to plan, and just an intention to focus on what you can control may be helpful. But for those who are ‘planners’, the areas that are ‘outside of your control’ can inform the base of plan A, B, and  Z. If you’re not sure of the possible outcomes, ask any questions you need to of your healthcare team.

Writing out a plan for each of these possible outcomes can help to stop the cycle of thoughts going around and around in your head. You might have a possible outcome where the current investigation is a blip on the radar. in writing out this plan, you might focus on things like deciding investigations and getting through this period emotionally and with your relationships.

In this scenario you might plan for making the most of the time you have together, on your baby knowing only love, and on experiencing things you had hoped to do together. You might have ways of connecting with your baby while they’re in utero, or things you want to do together once they are Earth-side. For some families this might mean making memories in the time you have together while their child is alive, as well as making memories after their baby has passed away.

While it is incredibly difficult making these plans, many people find it a comfort to know they have thought through the worst, and if they need to go down that path they have steps to follow. Making these plans is called ‘parallel planning’- which means you hope for the best and plan for the rest. Perinatal palliative care can be an important part of this planning, and doesn’t mean that you are giving up hope, just planning for every possibility.

To make your plans, think through the potential outcomes that are in the ‘outside of my control’ category, and write down the decisions you would have to make within each, and ways you would like to make that outcome the best it can possibly be. Talk with your care team about the medical components and where you need support for these possible paths.


5-      Make memories

Making memories with your baby is often a core component of the ‘worst case scenario’ plans, but one which is beautiful to do regardless of how the components outside your control play out. What ‘making memories’ looks like will be different for each family. Some things to think about include special moments you hope your child will experience, your own experiences from childhood you think they would enjoy, and physical reminders of these special things.

For example, while the baby is in utero you might connect through things that you love- If you love music or dance, you might like to play some favourite songs or dance with your baby while they are held safely in their mama’s belly. There might be a place you want to visit or sounds of nature you want them to experience. Videos and photos of these things will mean you are able to relive these moments. You might want to write them a letter or make them a video saying all the things you want them to know.

After your baby is born you might have particular ways you want to keep the memory of their smallness- photos, handprints, and locks of hair for example. There might be very usual things you want to make sure you have the chance to do for them- bathe them, dress them, hold them for as long as possible.

You might have a religious ritual or family tradition you want them to be part of. This doesn’t have to look the way it usually would, or even be held at the time it usually would. Decorate the Christmas tree in August? Why not. You write the rules. If there’s something you would like to do but aren’t sure it’s possible, talk to your health team about it. They may have ways of making things happen!

If your baby’s life is not expected to be long, some states have children’s hospices who support families while their child is alive and after death. These hospices are places of love and being held through unthinkable heartbreak, including in your grief. As well as being experts at supporting families to make cherished memories together, they have special facilities which allow the family and baby to stay together after the death of their child, to take their time to say goodbye and bring together the wider family in a home-like environment. Making memories in this context might be part of your planning too.

Planning to make memories with your child through this time of uncertainty can be a thing of beauty and joy to focus on through an intense time of anxiety and distress. You might like to think through:

  • What emotions do I want my child to be surrounded with, in mama’s belly and after they’re born?
  • What experiences do I want my child to be part of?
  • How can we make mementos of these special experiences I will be able to look back on?

Planning to make these memories with your child can mean that if this time of uncertainty does lead to not having a lifetime together, you can take some comfort in what you shared. For some people knowing their baby knew only love and connection, and that they shared their family’s joyful moments drives the family’s emotional response to the heartbreak of losing their child, forever.  And if this period of uncertainty is just a blip on the radar you have had a pregnancy full of love, joy, and connection. Planning to make the most of this time gives you a valuable goal to hold onto when big things are outside of your control. And time and effort poured into loving and connecting with your baby will never be wasted.


Final thoughts

No matter the way you navigate this time of waiting to find out more about your baby, there will be distress, worry, and big emotions. As long as no one is getting hurt these are all healthy and usual ways to cope through this time. Try to catch any thoughts of ‘I should be coping better’, take a breath, and remind yourself you are doing a wonderful job through an awful time. The aim will never be to get rid of all distress, but by being open with about the issues, connecting with your support system, and filling your pregnancy with love and connection you will be able to look back at this time knowing you did all that was within your control.

Our resources were collaboratively written by professionals and parents with lived experience of receiving a prenatal diagnosis. To learn more about the team behind this resource, please view:

Contributors Bios
Melanie Rolfe
    Pieta Shakes

      These resources are provided for information purposes only and should be read in accordance with the Resource Library disclaimer.

      If you or a loved one need support, speak to your care providers or see our Mental Health and Wellbeing page for contact information for urgent and/or ongoing support. 

      Return to the Information Library