Walking Between Worlds — Continuing a Pregnancy After a Life-Limiting Diagnosis
For parents who have received a devastating diagnosis and chosen to continue their pregnancy — this is for you.
There is no map for where you are.
You are pregnant. You are also preparing for death. You are a parent in the fullest sense — loving, nurturing, protecting — and you are simultaneously being asked to hold something that most people will never be asked to hold. The foreknowledge of your baby's death while they are still alive and moving inside you.
The shock of a life-limiting diagnosis is its own particular kind of devastation. The ground falls away. Reality as you knew it shifts completely. And then — after the shock — comes the days, the weeks, the months of what follows. The living with the knowing. The waiting.
You are walking between worlds. And you are not alone.
From My Own Journey
When my daughter Eliza was diagnosed with Hypoplastic Left Heart Syndrome and Trisomy 18 — together incompatible with life — everything changed. The weeks that followed were among the most profound of my life. I learned what it means to shepherd both life and death at the same time. To walk between worlds — outwardly pregnant, moving through appointments and daily life, inwardly already grieving, already preparing, already loving her with everything I had.
Grief would arrive in waves that felt ancient and beyond language. And in the very same breath — moments of love so vast I felt I might burst. Both things were true at once. Both were allowed.
What I want you to know — from someone who has walked this path — is that the knowing is not only a burden. There is a gift inside it too. The gift of time. Time to be with your baby. Time to prepare. Time to make memories and mark moments and love them with intention before they are gone. Not every parent gets that time. You have it. And it is yours to use in whatever way feels most true and meaningful for you and your family.
The Weight of Anticipatory Grief
Anticipatory grief is its own particular kind of grief — real and present and relentless, but held in a particular kind of suspension. You are surviving moment to moment to moment, waiting. The loss is always on the horizon. It sits in the background of everything — every appointment, every kick, every ordinary moment. You grieve and you love simultaneously, with death always coming but not yet here.
There is a particular quality to that waiting that is unlike anything else. You are not yet on the other side. You cannot be. You are suspended between your baby's life and their death — and that suspension asks something profound of you.
When death finally comes it closes that chapter. Not with relief exactly — but with a kind of completion. The page turns. And what follows is a different kind of grief — mourning the death itself, your baby's actual life and death, in a way that wasn't possible before. Slowly, slowly, slowly you begin to move forward. Not because the grief is over. But because you are no longer suspended. The waiting is done. And life — and grief — can begin to move again.
Naming this doesn't make it easier. But it may help you understand what you are living — and why it feels the way it does.
Parenting Your Baby Now
Parenting doesn't begin at birth. It is already happening — in every choice you make, every meal you eat, every time you talk to your baby or feel them move or imagine their face.
One of the most meaningful things you can do in this time is lean into the parenting that is already available to you. Not because it will change the outcome. But because it is real, and it matters, and it is yours.
This might look like naming your baby — letting their name be spoken, letting loved ones use it, making them present and real in the world before they arrive. It might look like movement — taking walks with your baby, going somewhere special, knowing that where you go, they go. It might look like talking to them, singing to them, reading to them — not because it will change anything but because connection is its own kind of meaning.
Lean into the rituals that feel right. Be open to spontaneous, creative ways of marking this time. A special trip. A ceremony. A letter written to your baby. A playlist of songs that belong to this chapter. A mother's blessing circle — gathering the people who love you to hold you and celebrate this baby before they are born. A ceremony. A celebration. A dance party. There is no formula. There is only what feels true and meaningful for you and your family.
I remember thinking that I would not be able to celebrate my daughter's high school graduation. I would not be there for her milestones or her firsts. But I could throw her a dance party — with all the people who loved us — while she was still alive and moving inside me. And I did. That memory belongs to her life. Nothing can take it away.
You may not get the milestones most parents get. But you get now. And now is enough to create something real and lasting and full of love.
Ask for extended ultrasounds. Ask for images to take home. Record their heartbeat if you can. Book a maternity session to capture your body carrying this child. Include siblings and family in the milestones — the kicks, the hiccups, the moments that belong to your baby's life.
Think about what you might regret not doing — and do it. Because you know. And because you can.
Permission to Rest
In the midst of all of this — the grief, the appointments, the memory making, the preparing — please know that you are also allowed to rest.
You are allowed to take breaks from the weight of it. To watch something ordinary on television. To laugh at something. To spend an afternoon not thinking about any of it. To be alone with yourself in stillness and quiet without doing anything meaningful or intentional at all.
Rest is not abandonment. Stillness is not disconnection. Taking a break from the grief does not mean you love your baby any less. It means you are a human being with a nervous system that needs relief — and that taking care of yourself is also a way of taking care of them.
Be gentle with yourself. This is one of the hardest things a person can be asked to walk through. You do not have to do it perfectly. You just have to show up for it in whatever way you can.
Preparing for Birth
When you are ready — and at whatever pace feels right — it is worth beginning to think about the birth itself. Not because planning will make it easier. But because knowing what your options are, and having some sense of your wishes, can reduce the number of unknowns you are navigating in an already overwhelming time.
Think about where you want to give birth and who you want with you. Consider working with a bereavement doula — someone trained specifically to support families through the birth and death of a baby, who can hold you and advocate for you and help ensure your wishes are honored in the moments that matter most.
Think about the tangible ways you want to honor your baby's physical presence — footprints, a lock of hair, fingerprint jewelry or molds. Family photographs taken by a photographer experienced in bereavement work. These are not morbid requests. They are acts of love. They are the things that will matter immeasurably in the years ahead — the physical evidence that your baby was here, that they were real, that they were yours.
Think about your wishes for after your baby arrives — how much time you want with them, who you want in the room, and what you want that time to look like. These are conversations worth having gently and in advance with both your hospital team and your funeral home — not because you have to have all the answers, but because knowing your options can bring a quiet sense of agency in an otherwise overwhelming time.
One thing many parents are never told — and that I want you to know — is that you may be able to bring your baby home with you after they die. To have more time. In your own space. Surrounded by the people who love you. For some families this feels right. For others it doesn't. There is no wrong answer. But knowing it is possible means you get to choose.
Your funeral director can walk you through what this looks like and help you understand what is possible in your state. You don't have to figure any of this out alone.
You don't have to have it all figured out now. You just have to begin.
In the next part of this series we will look at the more practical side of this journey — preparing for your baby's death, understanding your options, and navigating the decisions that lie ahead.
If you are walking this path and looking for support from someone who has walked it herself — I would love to connect.