By Kara Hansen, PhD, LCSW, PMH-C
Maybe it started with a pause. The ultrasound tech went quiet, then left the room to get someone. Or maybe it was a phone call: “We saw something we’d like to look at more closely.” Since then, you’ve been living in a strange in-between place. You’ve had more scans, more tests and more appointments. You may already have a diagnosis or you may still be waiting for one.
I’ve walked alongside families in this in-between for more than 15 years, and here’s what’s true for every single one of them: even with a diagnosis, so much is still unknown.
Living with Questions That Don’t Have Answers Yet
Diagnoses can change. Outlooks can improve or worsen from one scan to the next, sometimes every few weeks until delivery. And many of the biggest questions can’t be answered before birth: Will I get to hold my baby right away, or will they need care that can’t wait? How will they do in those first hours, days and weeks? Will they survive? Parents hear “We’ll know more once the baby is here” so often it can start to feel like a refrain. And even then, there aren’t always answers.
If part of you has wished for a clear answer, even a hard one, just so you could stop bracing, you are not cold or broken. You are not loving your baby any less. You are having one of the most human reactions there is.
Your Brain Is Built To Predict
Our brains are, at their core, prediction machines. They are constantly working to answer one question: What’s going to happen next, and how do I get ready for it?
When the answer is clear, even when it’s painful, the brain can start to do its work. It can grieve, plan, ask questions and adjust. When the answer is unclear, the brain can’t settle. It keeps scanning, rehearsing every possible outcome, and bracing for all of them at once. That is exhausting.
Researchers have measured this. In one well-known study, people were more stressed when they had a 50-50 chance of receiving a painful shock than when they knew for certain the shock was coming (de Berker et al., 2016, Nature Communications). Not knowing what to expect was harder than knowing. So, if the waiting feels unbearable, there’s a reason. It isn’t a weakness. It’s how we’re wired.
Why This Kind of Uncertainty Is So Hard
The uncertainty that comes with a fetal diagnosis isn’t the ordinary kind. A few things make it especially heavy:
- It keeps moving. Just as you start to adjust to one picture, a new scan or test can change it. Many parents describe feeling like they can never quite catch their breath.
- You’re asked to decide before you know. Choices about where to deliver, which interventions to consider, or what path to take often come before you have the answers you want.
- It reaches into the moments you imagined. Many parents carry a picture of meeting their baby: holding them, the first feeding, bringing them home. Not knowing whether those moments will happen the way you hoped is its own kind of loss.
- You hold hope and grief at the same time. You may find yourself picking out a crib one day and bracing for loss the next. Both can be true at once.
That last point one deserves extra attention. Many parents feel they aren’t “allowed” to grieve when their baby is still here, and nothing is certain yet. But something real has already changed: the pregnancy you imagined, the birth you planned, the future you thought you knew. Family therapist Pauline Boss has a name for this: ambiguous loss, a loss without clear answers or closure. You can grieve what’s changed and hope for your baby at the same time. Feeling pulled in both directions isn’t confusion. It’s an honest response to a situation that doesn’t have clear answers.
What It Can Look Like
Living with uncertainty often shows up in ways parents don’t immediately connect to it:
- Searching online late at night, again and again
- Trouble sleeping, or replaying conversations from appointments
- Dreading the next scan, or feeling like you’re holding your breath between them
- Feeling numb or disconnected from the pregnancy
- Snapping at a partner, or feeling like you’re coping on different planets
- Avoiding baby-related things, or avoiding people who ask how the pregnancy is going
What Actually Helps
Here’s the honest truth: there’s often no way to make the uncertainty go away. But there are ways to make room for it so it doesn’t take over everything.
- Name it. When the spiral starts, try saying to yourself, “This is the waiting part. This is my mind trying to predict.” Naming what’s happening creates a little bit of space between you and the worry.
- Separate what you know from what you’re imagining. Try two columns on a piece of paper: What we know today and What I’m afraid might happen. The second column is usually much longer, and seeing that can help.
- Shrink the time frame. “How will we get through the rest of this pregnancy?” is too big a question to answer. Ask instead, “What do I need to get through this afternoon?”
- Put some boundaries around searching. Information can help, but endless searching usually feeds the fear rather than calming it. Consider choosing a time limit, sticking to a few trusted sources, or keeping a running list of questions to bring to your care team.
- Ask your team about the uncertainty itself. These questions can be surprisingly helpful:
- “What will we know after this test, and what won’t we know?”
- “What are the possible ways things could go at birth, and how would we prepare for each?”
- “When is the next point we’ll have more information?”
- “What would you want to know if you were in our shoes?”
- Stay connected to what matters to you. Uncertainty can make it feel like life is on hold. But even now, you get to decide what kind of parent you want to be in this moment. Maybe that means talking to your baby, writing in a journal, or letting yourself enjoy a kick. It might mean protecting time with your partner or your other children. You don’t need the answers to show up as the parent you want to be.
- Let each other cope differently. It’s very common for one partner to want every detail while the other needs distance. Neither is wrong. It can help to say out loud what each of you needs, so differences don’t get mistaken for not caring.
You Don’t Have To Make It Go Away To Get Through It
If you take one thing from this, I hope it’s this: struggling with uncertainty isn’t a sign that you’re coping badly. It is one of the hardest things a person can be asked to carry, and you are carrying it while also carrying a baby.
You don’t have to carry it alone. Many fetal care centers now have social workers, psychologists and other mental health professionals as part of the care team – or ones they can refer you to. Ask yours who is available to talk with you.* Wanting support doesn’t mean something is wrong with you. It means you’re going through something hard, and you deserve care too.
Kara Hansen, PhD, LCSW, PMH-C, is a perinatal social worker and researcher at the Fetal Health Center at Children’s Mercy in Kansas City. She believes every family facing a fetal diagnosis deserves mental health support as part of their care, and her work focuses on making that possible.
* You can also call or text the National Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262) anytime, day or night. If you’re in immediate danger, call or text 988 or go to your nearest emergency room.
By Kara Hansen, PhD, LCSW, PMH-C
