Grief After Stillbirth, Infant and Child Loss: When 'Miscarriage' Isn't your Word
There is an intake form in front of you, a list of support groups, or a search bar, and you are supposed to pick a word or decide how to identify what happened. Miscarriage. Stillbirth. Fetal demise.
All of them feel like cold medical terms and none of them convey the weight of loss you experienced.
Maybe your baby was born. Maybe he or she had a name and a birth certificate. Maybe you held them, and the one photograph someone took in the hospital is the only one you will ever have.
Maybe they lived for four days, or four months, or four years. Or maybe your loss was earlier than that, but miscarriage doesn’t quite explain what you experienced.
I'm Stephani, a perinatal and grief therapist in New Jersey. I want to say the thing that most writing about pregnancy loss don’t say clearly enough: there are so many nuances to perinatal grief and loss, so it’s important to know that you get to name your own loss, and nobody gets to correct you.
When the Word Doesn't Fit, People Scroll Past their Own Grief
Here is what I see happen. Someone loses their baby at 26 weeks, or at three days old, and goes looking for support. Initially, almost everything they find is written for miscarriage, which is a term meant for early pregnancy loss.
The articles are about a friend who was six weeks along. The advice focuses on trying again.
At face value, none of it is wrong. It is just not about them. So they close the tab, and a loss that already feels so isolating gets even lonelier. If that has happened to you, I am so sorry. This is the post I wanted you to find.
The Names for These Losses, and Why None of Them are the Size of It
Medically, we sort perinatal losses by timing, because that is what medicine needs to do. It helps to know these terms, if only so you can tell when someone is using one and meaning something else.
But hear the caveat first. These are categories for charts. They are not a ranking, and they have nothing to do with how much you loved your child.
Chemical pregnancy. A loss very early on, often around the time a period would have arrived. A positive test is still a pregnancy, and the plans you made that week were still real plans.
Ectopic pregnancy. A pregnancy that implants outside the uterus and cannot continue safely. People who go through this often grieve and feel they are not entitled to because it was not a viable pregnancy.
Missed miscarriage. The pregnancy has ended but the body has not registered it yet, so the news arrives at a routine appointment. The silence in that room stays with people for years.
Termination for medical reasons (TFMR). A wanted pregnancy ended after a diagnosis, often a fatal one, on an impossible timeline with no good option in front of you. This is one of the most isolating losses I sit with, because people are afraid of how it will be heard. So let me be clear. Making an unbearable decision out of love for your baby is not the same as not wanting your baby. You are grieving a child.
Late miscarriage. A second trimester loss before 20 weeks, which often involves labor and delivery and almost never gets talked about that way.
Neonatal loss. A baby who dies within the first 28 days of life, often after time in the NICU.
Infant loss. A baby who dies before their first birthday, including losses to prematurity, SIDS, or a condition or complication nobody saw coming.
Early child loss. A toddler or young child. A little person with a laugh you can still hear.
You can feel how quickly that list stops being clinical and starts being a life. That is the point. Somewhere in it the word stops matching the weight of what a mother and family go through.
What Changes When a Loss is Late Term, or When Your Baby Lived
Grief is grief no matter what gestational age. I want to say that first, because parents of very early losses read these posts too, and they deserve the same space if needed.
What changes though is the shape of the loss, and how much of your world has to be dealt with afterward.
When a loss comes later, a mother often gives birth. There will be a name, a hospital bracelet, footprints, a funeral or memorial service, or even an obituary written by someone who can barely stand up.
There is a body that was visibly pregnant, neighbors and friends excitedly aware of a due date, and then the terrible arithmetic of who still has to be told. There is a milk supply that arrives anyway, days later, that doesn’t let up as if nothing happened.
Then there are hospital bills, a nursery with the door closed, and a car seat still in the back seat. You will have to handle all of this on the worst days of your life, most likely while on autopilot with someone telling you how strong you are.
A more visible loss sounds like it should mean more support, and sometimes it absolutely does. Sometimes it can also mean managing everyone else's shock first and watching people you know cross the street because they cannot think of what to say.
And when a baby lived, even briefly, you are grieving a person you met and not just a future you imagined. There are memories, and memories cut both ways. They are beautiful, and they are specific enough to ambush you.
Their smell. The exact weight of them. A lullaby. If this was your first, you are a parent with no child to point to. If you have other children, you are parenting in the daylight and grieving at night, and a stranger asking how many kids you have suddenly becomes the biggest decision you make in half a second.
What Partners Carry
Partners are the most overlooked grievers in all of this. The partner who was not pregnant often steps straight into logistics. They make the calls, handle the paperwork, drive the car home from the hospital. They are asked how the mother is doing, over and over, and almost never how they are.
Some of them won’t get the chance to come apart until much later, and by then what may seem true is that everyone else has moved on.
If you are the partner reading this, your child died too. You are not support staff. Your grief is real and does not need a different name.
And if you and your partner are grieving differently, either on different schedules and at different volumes, that is not a sign that something is wrong or that the relationship is failing. What actually strains couples is when each person quietly decides that the other one does not care as much.
What this Does to the Body
As we’ve noted in previous blog posts, grief lives in the body, and for many people it is not only grief but the trauma surrounding it. You might notice a tight chest that fails to loosen, sleep that breaks at the hour it happened, a startle response that fires at nothing, a pit in your stomach when you pass the hospital exit on the highway.
You might even go numb and then feel guilty for feeling nothing at all. You might avoid pregnant or parenting friends and then grieve those relationships too.
None of that means you are handling this badly. A nervous system that has been through a medical emergency, a delivery that ended in silence, or a stretch in the NICU, keeps bracing long after the event is over.
The same goes for partners that witness the trauma. This is a body trying to protect you, and it can respond well to the right kind of help.
Trauma-informed and somatic based work matters here, because you cannot just talk a startle response out of existence. You must work with your body, gently, at a pace you set.
Gentle Ways to Carry This
Use your own words. If your loss was a stillbirth and you say my son died, that is accurate. If you call your chemical pregnancy your first baby, that is accurate too. You do not owe anyone a clinical term.
Decide in advance what you will say. Keep a short answer ready for how many children you have, and a longer one for people you consider closer. A script means the question stops catching you unprepared.
Let the hard days exist. A candle, a piece of jewelry, a plant, the hospital blanket, a framed set of footprints. Grief needs somewhere to go, and there is no wrong object.
Find the people who get it. A room of stillbirth and infant loss parents is different from a general grief group, because nobody in it needs the loss explained first. Your OB, your midwife, your hospital's bereavement coordinator, or a perinatal therapist can point you to one.
How People Mark October
October is Pregnancy and Infant Loss Awareness Month in the United States, designated by Congress and proclaimed by President Reagan in 1988. October 15th is Pregnancy and Infant Loss Remembrance Day.
On the evening of the 15th, people take part in what is known as the Wave of Light. At 7pm local time you light a candle and keep it lit for at least an hour. Because everyone lights at 7pm in their own time zone, the light rolls west across the world for a full day without going out.
That is all it is. A candle, an hour, your own kitchen table if that is what you have. You can post about it or tell nobody. Some families say the name out loud. Some just sit. If this is your first October you do not have to do anything at all, but know you are not alone. And if you want to mark it and feel strange about wanting to, wanting to is not performing. It is one of the few ways left to parent the one you lost.
When to Reach Out for Support
You do not need to be in crisis to deserve help. It may be time to talk to someone if:
The grief is not softening at all over time, or it keeps getting heavier
You are having intrusive memories of the birth, the hospital, or the moment you found out
You are avoiding people, places, or things that remind you
You feel disconnected from the people you love, or from yourself
You are pregnant again, or thinking about it, and the fear is running everything
You have had any thoughts of harming yourself (please reach out right away, go to your nearest emergency room, or call or text 988 for the Suicide and Crisis Lifeline)
In New Jersey, perinatal mental health and grief therapy is available virtually, so you can talk to someone from your own couch, without a waiting room and without explaining yourself to anyone sitting in it.
Frequently Asked Questions About Disenfranchised Grief
What is the difference between a miscarriage and a stillbirth?
In the United States, a pregnancy loss before 20 weeks is called a miscarriage, and a loss at or after 20 weeks is called a stillbirth. That line exists for record keeping, not for grief. Some international sources use 28 weeks instead, which is why the same loss can be given different names depending on where you are reading.
What do I call my baby if the loss was very early?
Whatever you want to call them. Baby, son, daughter, the name you had chosen, the nickname you used out loud in the car. There was no threshold you had to cross to be allowed a word, and you are not grieving in proportion to the time you had.
How do I answer when someone asks how many children I have?
Any way you want, and maybe differently on different days. Some people include every child every time. Some give the number at home and carry the rest privately. Both are honest. Choose by what you have the energy for that day, because your love is not measured by what you say to a stranger at a barbecue.
My partner and I are grieving completely differently. Is that normal?
Very. The risk is not the difference, it is the silence that grows around it. Saying it out loud, even clumsily, tends to help more than trying to match each other.
Can therapy really help with this kind of loss?
Yes, and it is not about moving on. Working with a therapist trained in perinatal loss can help with the trauma that often comes with a later or medical loss, the guilt that arrives whether or not it makes any sense, the strain between partners, and the fear that comes with trying again. The goal is never to miss your child less. It is to be able to carry them without it costing you everything else.
Let’s Talk
If any of this is what you are carrying, I would be honored to sit with you. I'm Stephani, a Licensed Clinical Social Worker and the founder of Rise Counseling. I work virtually with people across New Jersey who are moving through loss.
You can reach out for a free 15-minute consult here. No pressure, no commitment. Just a conversation about what's going on for you and whether therapy might help.