Families facing loss during pregnancy or shortly after delivery often experience a lifetime of loss — and need supporters who understand the complexities of remembering a lost baby.
The day a family receives a prenatal diagnosis of a life-limiting condition, they experience a primary loss. In that moment, life as they knew it, and life as they envisioned it, ceases to be.
They now face a harrowing journey that ends in another devastating, primary loss: that of their baby or babies. But these primary losses are just one aspect of a complex set of carrying to term experiences they now face.
Carrying to term families experience many losses during their journey — and oftentimes, over the course of their lives in remembering a lost baby or babies.
Understanding the nature of the loss experiences associated with grieving a baby loss can help family, friends, and other supporters better care for carrying to term families.
Understanding secondary loss
Secondary loss refers to losses that emerge out of, or are a byproduct of, a primary or initial loss. People who have not gone through grieving a baby loss may not be aware of the ways in which every step of the carrying to term process can be experienced as another loss.
It can be helpful for supporters to understand the way in which the experiences of pregnancy are changed for carrying to term families. Consider these examples:
- The idea of labor and delivery is transformed from a beginning to an ending.
- Every sonogram is a reminder that their time with their baby is short.
- Every time someone stops them in the grocery store to inquire about their pregnancy, they are reminded of all that should have been.
- Maternity pictures are transformed from images of joyful anticipation into baby loss keepsakes.
Pregnancy, which should be a time of joy and preparation, becomes a time of unwanted planning, painful questions. Memories made at this time will not be touchstones to look back on with their child or children when they are grown — but they are still important memories.
Every second with their child is a time to cherish. At the same time, each pregnancy experience becomes a painful reminder of just how few seconds they will get. Parents can be exhausted by the emotional tension between anticipating what is to come and being present in the moment.
Each of these experiences is a loss. Each can be extremely painful. But it is also true that memories made in pregnancy may become precious. They preserve the limited time in which these parents felt their baby alive, well, and safe.
Understanding the timeline of loss
It is important for supporters to remember that grieving a baby loss takes time — much more time than may be at first apparent. In some ways, remembering a lost baby or babies means parents will experience secondary losses for the rest of their lives.
When we first experience loss, our support networks rally around us. For carrying to term families, the period from diagnosis through the carrying to term journey, and into the bereavement period following loss is often well supported.
But as weeks go by, supporters begin to stop bringing meals or checking in. Eventually, they stop talking about the baby or babies at all. This passage of time and decrease in support can be incredibly painful for parents who are still deeply affected and actively grieving a baby loss. It is one of many secondary losses.
Months pass, parents return to work, and by the world’s standards, the parents are “living again.” But there is a big difference between living and surviving. Supporters can help by recognizing that grieving a baby loss continues even as parents attempt to, or appear to move on with living.
For the first year, bereaved parents are simply surviving. The mere act of breathing and putting one foot in front of the other feels like a marathon. Though they are alive, it can be a struggle to truly live in a world without their baby or babies.
Though it may seem to you, after time has passed, these families have healed, it is important to remember that they never truly stop grieving. The acuteness of the primary loss may have faded. Parents may talk about the experience less, or cease asking for support altogether.
But, make no mistake — as long as they live, they will wrestle with the reality of secondary losses. This is why an understanding of the enormity of secondary loss is so important for someone who is a supporter of bereaved parents.
“Secondary loss refers to the losses that emerge out of or are a byproduct of the primary or initial loss.”
Recognizing the invisibility of loss
Remembering a lost baby is an important part of grieving a baby loss. Though such a loss is profound, it is also extremely private. In this way, the loss of a baby or babies to a life-limiting condition can feel like an invisible loss. Invisibility is painful.
When a parent loses their baby or babies, they are experiencing a devastating primary loss. The emotional pain these parents feel when they meet their baby or babies only to say goodbye is an overwhelming, all-consuming, life-shattering situation. How can it be invisible?
In all likelihood, the number of people who meet the baby or babies is small. Depending on timing and circumstances, there may not be a baby shower. After a memorial or funeral, people go home, live moves on, and support begins to fade.
This can cause carrying to term parents to fear that over time, their baby or babies will not be remembered at all. Supporters can help by recognizing that though a lost infant is not with us, that infant was a person — and the parent is still a parent to that child. Supporters can then understand why:
- Talking about and remembering a lost baby or babies matters to a bereaved parent.
- Failing to remember a lost baby may feel like failing the child who has been lost.
- Infant loss keepsakes may be, become, or remain precious to them all their lives.
You can counteract the invisibility of a baby loss by continuing to remember the lost baby, and share your remembering with bereaved parents. Get more guidance on how important it is for supporters to remember a lost baby, and what remembering a lost baby looks like.
Coping with the complexities of loss
Know that for loss parents, life will move forward. But also know that this does not make it any less painful. Grieving a baby loss can leave a lifetime of secondary losses in its wake. In the course of their lives, carrying to term families may struggle with:
- Going home to an empty house
- Handling holidays
- Subsequent pregnancies
- Milestones like first days of school, graduations, weddings
- Welcoming future generations
It is okay if this concept of primary and secondary loss is new to you. The carrying to term journey is complex, emotional, and deeply impactful to the lives of those who experience it. No one expects you to fully understand that which you have not experienced for yourself.
It is also okay if the concept secondary loss feels particularly overwhelming or hard to wrap your mind around. As a supporter of parents who have lost a baby or babies, these losses are not yours to bear, change, or lessen.
The complexities of grieving a baby loss are simply yours to be aware of. It is yours to recall the complexity, length, and invisibility of this experience when you wonder why friends or family members are still grieving a baby loss years later. It is yours to reflect upon when you cannot at first understand why they do or say the things they do.
When supporters have a more nuanced understanding, it can help carrying to term parents feel seen, heard, and understood even as they experience pain or grief on life’s journey.