AS PARENTS FACING A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION, YOU ARE GOING TO EXPERIENCE A RANGE OF EMOTIONS FOLLOWING DIAGNOSIS, THROUGHOUT THE PREGNANCY AND DELIVERY, AND AS YOU TRANSITION INTO LIFE AFTER LOSS. THESE EMOTIONS CAN BE UNEXPECTED AND, AT TIMES, UNSETTLING, BUT IT IS IMPORTANT TO REMEMBER THAT EMOTIONS ARE NEITHER GOOD NOR BAD. EMOTIONS ARE NEUTRAL. HOW YOU FEEL AT ANY GIVEN MOMENT ON ANY GIVEN DAY IS COMPLETELY VALID AND NORMAL. UNFORTUNATELY, THERE IS NO GUIDEBOOK OR MAP TO FOLLOW BECAUSE THE EMOTIONS YOU EXPERIENCE THROUGHOUT THIS JOURNEY ARE COMPLETELY UNIQUE TO YOU.
As you navigate the carrying to term process, I encourage you to hold space for your emotions. Let them come and experience them as they happen. Do not prescribe value judgments to them. How you feel in a particular moment does not define you nor does it say anything about the depth of your love for your child or the quality of your parenthood. You have every right to feel how you feel each step of the process. Your feelings are a natural expression of this tragic event happening to you and your family so please do not waste precious time and energy judging your emotions.
The world will try to categorize your grief or fit it into a pattern that they hope gives them some insight into how you are grieving or when you will be done grieving. The truth is, you are never truly done grieving. It shifts and changes, but it never truly dissipates. So, when the world around you tries to determine what stage of grief you are currently falling into and which one they predict you will enter into next, ignore them. Grief is not linear, and emotions do not follow a prescribed step-by-step pattern. You will feel a vast variety of emotions, and you are likely to revisit emotions you thought you had already processed.
Emotions are subject to change and can be volatile. They appear suddenly, and they can shift and dissipate equally as abruptly. You might find yourself surprised by the outburst of a particular emotion when you least expect it. Just remember, it is not a judgement on you or how you are grieving. It is simply part of the process. Fight the urge to measure your grief and your emotions against another person’s. No two people experience grief the same, not even two people as equally as invested as you and your significant other. Pay no attention to people who try to dictate your emotions based on their own experience or the experience of someone they know. Your only job is to hold space for your feelings and process them.
While you might not be able to control the emotions you feel, you can control how you act as a result of them. Emotions might be neutral, but your behavior is not. It is important to be mindful of how your emotions are affecting your communication and interaction with the people in your life. It is equally as important to be mindful of how your emotions are affecting how you speak to and treat yourself. Many of the emotions that you will experience throughout this process will be big and consuming. Lean on your significant other, your support network, and the expertise of professionals to help you manage and balance the influx of feelings. You do not have to navigate the emotional minefield alone.
Below, I am going to walk you through some of the common emotions you might experience as well as some insight on how to manage or process them. This list is by no means exhaustive, but these tend to be the most common emotions experienced by grieving parents.
SHOCK AND NUMBNESS
Shock is often the first emotion that you might face following your baby’s diagnosis. Receiving such sudden and upsetting news can be difficult to fully comprehend and process in the moment. You may leave the appointment feeling as though you have had an outer body experience, and you may struggle to recall all the details given to you. You may feel as though your entire world has been turned upside down, and you may not know how to respond to the information you have been given. Shock is not unique to the time immediately following diagnosis. You will experience another wave of shock following the loss of your baby. These broken experiences are impossible to fully wrap your mind around, so it makes sense that you would have moments of not knowing what to do next or how to respond.
After the initial shock wears off, you may find yourself feeling numb, or devoid of emotion. I want to be extremely clear here. Feeling a sense of numbness is in no way a statement or judgment about your love for your child or you as a parent. This is a completely normal part of the process. The numbness is your mind’s way of protecting you and giving you a short reprieve from all the emotion you have already experienced and all the emotion that has yet to come. At its core, numbness is simply the result of having to manage so much information, the reality of it all, and the tidal wave of varying feelings. That complex and overwhelming collision leaves you numb. Take heart because you will not stay in a state of numbness forever. Grief does not allow it.
“Grief is not linear, and emotions do not follow a prescribed step-by-step pattern. You will feel a vast variety of emotions, and you are likely to revisit emotions you thought you had already processed.”
You may, however, find yourself back in a state of shock or numbness as you process new information or as your levels of stress and anxiety increase at certain points in the carrying to term journey. If you find yourself in a state of complete emotional numbness for a long duration of time, you may be wrestling with a perinatal mood and anxiety disorder. There is absolutely nothing wrong with you if you find yourself struggling with depression, anxiety, or post-traumatic stress disorder. What you are experiencing is a trauma in so many ways, and you are not less than or weak if you need additional help to balance your emotions or handle the tidal wave of grief. For more information about the differences between grief, mourning, and perinatal mood and anxiety disorders, please read our post found here.
OVERWHELMED AND OUT OF CONTROL
Receiving a life-limiting prenatal diagnosis is a life-altering event. Choosing to continue your pregnancy is a life-altering decision. Saying goodbye to your baby shortly after saying hello is a life-altering loss. If you feel overwhelmed at the scope of the decisions you are faced with or the realities of what is happening to your family, that is completely normal. This feeling of being overwhelmed is likely to occur frequently throughout the process. From the moment of diagnosis, you are overwhelmed with the news and the information given to you. The process of researching, learning, and making decisions is overwhelming. Planning for delivery and the time you will have with your child is overwhelming. All that comes with life after loss is overwhelming. Managing everyday life in the midst of what you are walking through is overwhelming.
The best thing you can do for yourself when you feel this way is reach out. Lean on your significant other or your support network. Ask for help with the things that you can easily off-load like meals, errands, help with childcare if you have other children, and even financial help. If the idea of asking for help is overwhelming, that is okay. I have done a lot of heavy lifting for you by writing an entire post to your support network about how to support you. You can find that post here. I encourage you to read through that post and note anything that might be particularly helpful for you, and then share the post and your notes with your support network. Trust that the people in your life want to help and support you in the ways that are the most helpful for you. It is never too early to ask for this kind of help and support.
In addition to feeling overwhelmed, you may feel gripped by a sense of being out of control in your own life. You cannot control the diagnosis. You cannot change or control the outcome. You may not feel capable of controlling the chaos of your world crumbling around you. You are human, and you are only one person. There is only so much that you can control or handle on your own. Just like with being overwhelmed, when you feel out of control, do one small tangible thing like reach out, journal your thoughts, or make a list. Sometimes just getting the chaos out of your head and onto paper or into the hands of the people supporting you can be freeing and provide you a sense of control.
One of the best ways to gain a sense of control during your carrying to term journey is to create a birth plan. A birth plan is designed to help you think through and plan for the labor and delivery you want. It provides you the space to communicate your wishes regarding every aspect of your baby’s birth and the time you will have together. Carrying To Term offers an interactive and customizable birth planning tool on our site that allows you complete control and privacy. For a more in-depth look at our birth plan tool, please read our post here, and when you are ready to begin the birth planning process, you can find our tool here.
Anger is a completely normal emotion to experience in the face of unimaginable grief and suffering. You may find yourself feeling angry from the moment of diagnosis. That anger may continue throughout the duration of the pregnancy and even into life after loss. As parents, you have every right to be angry at the injustice of receiving a life-limiting prenatal diagnosis. You have every right to be angry about the fact that you or the woman you love will have to endure labor knowing what is coming. You have every right to be angry that you will not get the chance to watch your son or daughter grow and live their life. That is the ultimate injustice. It is the ultimate loss. Therefore, your anger is righteous and valid.
Throughout the entire process from diagnosis through the transition into life after loss, your anger may present in a variety of ways. You may notice a hostile or unfriendly attitude towards certain people in your life, from friends to family to your significant other. You may find yourself experiencing a sense of bitterness over the unfair nature of what is happening to you and your baby. You may find yourself feeling bitter towards a member of your support network or your care team for failing to support you in appropriate ways.
You may also find that your anger manifests in resentment. You may resent the doctor for delivering your diagnosis. You may resent every pregnant person you see or every healthy birth happening around you. You may resent every question you have to field about your pregnancy or every aspect of the process that reminds you of how broken this all is. These feelings of anger, in all the forms it can manifest in, are normal. There is nothing inherently wrong with these emotions. Where this emotion becomes right or wrong, good or bad, is the action you take as a result of these feelings.
If you are justifying damaging behavior to yourself, your significant other, or the people around you, you have taken a normal and valid emotion and twisted it into something bad. It is important to not bottle up your feelings of anger. Writing these feelings down or talking through them with your significant other, someone in your support network, or with a professional can make all the difference. Holding space for this emotion, validating it and allowing it to breathe, is vital to moving through the acute and intense initial presentation of anger. You will likely have sporadic moments of anger at the injustice of it all for as long as you draw breath, but you do not have to accept a life full of anger or behavior rooted in the emotion of it.
A healthy practice of self-care can be helpful in managing anger. If you find yourself holding on to a sense of bitterness or resentment for long periods of time, I would encourage you to talk through it and then embrace the idea of forgiveness and letting go of those feelings. Forgiveness really is not about the person or situation you are forgiving. It is entirely about you and your emotional health. Holding on to anger, bitterness, and resentment is more damaging to you than it is to anyone else. When you let go of these valid emotions in the right time, it frees you and allows you to find the moments of peace, joy, and hope that the future still holds for you.
BLAME, GUILT, AND SHAME
The emotions surrounding blame, guilt, and shame are complex. Placing blame and feeling guilt or shame are often ways that parents try to make sense of their baby’s diagnosis or the loss of their baby. When you are not given clear answers as to why a diagnosis occurred or when there is not an answer as to why this happened to you, it can be second-nature to search for any answer that might satisfy those questions. Placing blame, though not fair or healthy, can feel like a valid option. Whether that blame is placed on a doctor or yourself or your significant other or something that did or did not happen, this blame can seem like an answer in a sea of unanswered questions. The reality is though that blame sows nothing but discord and discontentment. It is important to know and remember that there is no answer that will ever satisfy you as a parent grieving your baby’s diagnosis or the loss of your child.
“Shame is another common emotion experienced by parents facing the loss of their child. Where guilt implies that you have done something wrong, shame takes it to a more personal level. Shame implies that you are wrong, bad, broken, or somehow not good enough. Shame attacks one’s sense of value or identity.”
When blame is placed internally, it causes guilt, or a sense of responsibility for what has occurred. You, as the pregnant mother, may feel a sense of guilt because you could not do something to protect the baby growing inside of you, and your significant other may feel a sense of guilt for not being able to fix the situation. But, the truth is that this situation is happening to you, not because of you or something you did or did not do. It is important to remember that when the instinct to place blame, internally or externally, rises up.
Shame is another common emotion experienced by parents facing the loss of their child. Where guilt implies that you have done something wrong, shame takes it to a more personal level. Shame implies that you are wrong, bad, broken, or somehow not good enough. Shame attacks one’s sense of value or identity. You are not a bad parent because you received a prenatal diagnosis of a life-limiting condition. You are not less of a parent because you do not get to raise your child. There is nothing to be ashamed of. You have been given impossible and devastating experiences, and you are doing the best you can.
When the urge to blame rises up or when feelings of guilt and shame overtake you, I encourage you to speak truth into the lies. Write down the things you are proud of during this process. What did you wrestle through and come to a decision about that gives you some peace? How did your significant other support you well this week? How did you support your significant other well this week? How did you experience your baby or make memories with him or her? Keeping a record of your struggles and the victories, big and small, will help you see where you started, how far you have come, and the work you put in to battling the pull of blame, guilt, and shame.
Anxiety is a perfectly normal and expected part of this process. It is understandable to feel anxious about the unknown and to worry about the grief and suffering that are to come. Grief and anxiety go hand-in-hand. Anticipatory grief is fraught with anxiety and worry. You have a general idea of what is coming and what will happen, but you cannot actually know until you are present in it. You may dread every appointment following the diagnosis and worry about the possibility of more bad news. You may dread the idea of having to research and learn more information as time progresses. You may fear the process of labor and delivery and worry about what the diagnosis means for the physical appearance and health of your baby in those moments. You may worry how the grief will change you, your significant other, or any other children you have. You may fear life after loss. All of those anxieties, fears, and worries are valid and normal.
Where anxiety crosses into unhealthy is when you allow it to rule your life and dictate your decisions. Living in a constant state of anxiety, fear, and worry robs you of the chance to be present in each moment you have with your baby. Part of the challenge of carrying to term is learning how to plan for the moments you need to plan for without living entirely in the future. It is about balance. If you are spending your entire day thinking about a day that is months from now, stop and take a breath. Step away from the planning or the research and do something in that moment that connects you to your baby. Make a memory, write in your journal, take a picture, or practice some self-care. Do something other than living in the anxiety of a day you are not equipped and prepared for yet. Trust that when the time comes, you will handle the day with grace and strength because you planned for it, and you lived in each moment along the way.
You may find yourself gripped by anxiety as you live your life after the loss of your baby. It can be overwhelming to look at the landscape of your life and realize how many years you will have to endure without your baby. I know this from personal experience, and it can be paralyzing to count the days and years I have left without my babies. I find myself tempted to do this, to look to the future, when being in the present is too painful or overwhelming. Yet, all I am doing is trading the hard that I am more equipped to handle for a hard that I am in no way equipped to process.
In those moments of sheer anxiety over the lifelong duration of my grief, I try to root myself in the present. I connect with my life and what is happening in that moment, and I bring the memory of my babies into it. Most of the time, that looks like speaking their names and sharing what I am thinking about them with my husband or my close friends and family. Sometimes, it looks like pulling out their photos or memory boxes and being present in the moment with them. Other times, it looks like accomplishing something from my to-do list that has nothing to do with my motherhood or what I have been through. In those moments, I just need to feel connected to my life as it looks right then.
“Where anxiety crosses into unhealthy is when you allow it to rule your life and dictate your decisions. Living in a constant state of anxiety, fear, and worry robs you of the chance to be present in each moment you have with your baby. Part of the challenge of carrying to term is learning how to plan for the moments you need to plan for without living entirely in the future. It is about balance.”
Anxiety will rob you of your present if you let it. There is going to be an unshakeable level of anxiety following diagnosis throughout the pregnancy and into life after loss, but that anxiety is not a prison. You do not have to live there forever. You can step out of the cell and be free for periods of time throughout the carrying to term process. Look for the opportunities to be present and make memories, and when you feel anxiety take root, do something tangible. Write down your anxieties in a journal and put it in a drawer. Spend some time working on your birth plan. Talk through your worries with your significant other, support network, or a professional. Do something that lets you feel in control of your anxiety.
LONELINESS AND AVOIDANCE
You may find that you experience a deep feeling of loneliness throughout your entire journey. Your particular experience is wholly unique, even from your significant other’s experience, and that uniqueness can feel isolating. Fundamentally, we all crave connection, and when you are facing a trauma, that craving for connection intensifies. You could be surrounded by well-meaning members of your support network and still feel a deep and pervasive sense of loneliness because no one can know what they have not experienced for themselves. Grief changes how you will interact with the people in your lives. This change is normal, so much so that I wrote an entire post dedicated to the effect grief has on relationships. You can find that post here.
The trick to combatting loneliness is not to find someone whose story aligns perfectly with your own. The trick to combating loneliness is vulnerable connection with someone who gets it enough. Your significant other gets it enough because they are walking through it with you. The way they process may look entirely different than your own, but by sharing vulnerably, you two can find connection that satisfies and draws you nearer to one another.
Finding another man or woman who has been through something similar can be incredibly helpful. There is a kind of connection that exists between grieving mothers that is heartbreakingly beautiful and restorative. The same is true for grieving fathers. To have someone speak into what you are experiencing is a powerful tool for surviving what feels impossible. If you do not know anyone who has lost their baby, reach out. More than likely, someone in your support network knows someone or can help you find that connection.
Professional counseling is another avenue for combatting loneliness. Having a dedicated space to safely and freely process everything you are feeling and experiencing is validating. A professional counselor can help you navigate the emotional landmines and communication pitfalls that will inevitably cross your path each step of the way. They can give you tools for processing and reaching out.
Though it may seem counterintuitive, avoidance can often go hand-in-hand with loneliness. You may feel like you can no longer connect with the people in your life, so you decide to just avoid them altogether. Through the carrying to term process, periods of isolation and avoiding people are not always unhealthy. It can be powerful to establish boundaries that provide the opportunity for you to turn inwards and focus entirely on you, your family, and your baby. These seasons of isolation become detrimental when you do not begin to let people back in. You are not meant to face the diagnosis, the continuation of the pregnancy, the loss, and life after loss in isolation. You are not meant to grieve in isolation. Find the balance between necessary seasons of withdrawal and opportunities to let people in.
Avoidance is not specific to the people in your life. You may find yourself avoiding reminders, certain places, or even tasks that you know you need to accomplish. When you find yourself avoiding something, take a moment and analyze the reason beneath that behavior. Is it anxiety? Are you overwhelmed? Are you angry? Finding the emotion that motivates the avoidance can help you process and move forward. Talk through the emotion and ask for help as needed. Is the task you are avoiding something that can be off-loaded to your support network?
For instance, if you are avoiding grocery shopping because the grocery store is full of people who ask questions about your growing belly, ask your significant other or a member of your support network to run the errand for you. If you are avoiding the birth plan process because you are angry about all that you have to plan for, invite someone into those emotions with you. Share them with your significant other, your support network, or a professional. If you do not feel like talking, grab a journal and give yourself the permission to put words to how you are feeling. Many times, the barriers between you and the task you are avoiding are not insurmountable.
Yearning can be a difficult emotion to process and reconcile with because it is a deep desire for a different outcome; for something you cannot have. Following diagnosis, you will find yourself yearning for different results, and this feeling can manifest in the desire for second and third opinions. It can also take the form of hoping for a miracle. As parents, you would give anything to change the outcome for your baby, and it can be difficult to accept the reality that this is out of your hands. Yearning is normal and valid, and it is okay to seek additional opinions, ask for further testing, and hope for a miracle. But, there will come a time following diagnosis where you have to accept the reality of what is happening.
When you embrace the reality of what is happening, you can channel your deep yearning into something sustaining. That desire to fix this or protect your baby is the foundation of parenthood. As parents, especially parents facing loss, we are asked to do the impossible: to live life with our hearts on the outside of our bodies. There is no denying that you will lose a piece of your heart and that you will long for it forever, but you can channel your love into the time you have with your baby. Yes, the time you have is painfully and unfairly short, but you have the chance to fit moments of parenthood in. Create memories that will sustain you for a lifetime. Take pictures. Journal or write letters. Have experiences. Plan for the time that your baby will be in your arms.
Accepting and embracing the reality of what is happening does not mean that you are content or okay with it. It simply means that you are accepting that you cannot change it, and as a result, you are doing all that you can to be present in it.
This feeling of yearning will follow you after the loss of your baby. You will feel the weight of empty arms and long to hold your baby again. In those moments, the memories you made, the pictures you took, and the mementos you created will help you feel connected to your baby. This is a weight that I would not wish on anyone, and it is a weight you should not have to bear. The deep longing for your child does not go away because it is part of being a parent. It is your love for your child and your sorrow for all that has happened.
There truly is not a word that properly expresses the depth of sorrow that you will experience. Words like heartbreak, devastation, distress, sadness, despair, agony, and grief fall short because this is a sorrow unlike any other. To lose someone you love is painful and broken, but to lose a child is an entirely different level of painful and broken. No words can do it justice, and nothing can prepare you for it. It is a sorrow so big that your body will barely be able to contain it. It will threaten to consume you and never let you free.
“To feel this level of sorrow is righteous and valid. You are grieving, and the bigger the love, the bigger the grief. What is bigger than a parent’s love for their child? Nothing.”
I can only speak from my own experience when it comes to this kind of sorrow. Your sorrow may look different or express itself differently than mine, and that is perfectly valid. For me, the sorrow that followed the loss of my triplets was consuming. I felt powerless to help them, and I felt powerless against my sorrow. When my husband and I got home from the hospital, I needed to do something. I took their memory boxes and placed them in their cribs, carefully arranging them around the quilts that were lovingly made for them. In that moment, I let out what I can only describe as the “mama wail.” A sound so foreign that I did not even recognize that it was coming from me. It felt terrifying and consuming, but it also felt right and honoring.
To feel this level of sorrow is righteous and valid. You are grieving, and the bigger the love, the bigger the grief. What is bigger than a parent’s love for their child? Nothing.
This sorrow will be big, but it will not defeat you. This acute sorrow does not last forever. Though time does not end your grief or fully heal you, it does lessen the severe and crippling nature of your sorrow. As you process your grief and hold space for all the emotions you will experience, you become better able to carry this sorrow. You change, and as a result, the sorrow morphs into something that you can carry for a lifetime. It still stings, but it no longer incapacitates you.
Your sorrow, in whatever form it takes and for however long it lasts, is completely valid. The world will have opinions and pass judgment on how you are managing your sorrow, but people cannot know what they have not experienced for themselves. Sorrow is unique, and yours will look different from other grieving parents, including your significant other. Find the similarities and search for the beauty in the differences. Sorrow, both yours and that of your significant other, is a powerful teacher. Let it be what it needs to be, and let it draw you to your significant other, not divide you. Your sorrow is part of loving your child so give yourself time and understanding as you navigate it.
HOPE, JOY, AND PEACE
These are not sweeping, all-encompassing feelings. Rather, they are pieces of dry land to be found in the midst of the raging sea of grief. These feelings of hope, joy, and peace can feel impossible, counterintuitive, or wrong considering all that has happened and all that is to come. Finding some hope, joy, and semblances of peace does not somehow make you less of a parent or lessen the love you have for your child. These feelings are simply a result of continuing on when you had every right not to. They are gifts in the middle of tragedy.
The first time you really laugh following diagnosis or following the loss of your baby will feel both wrong and freeing. For a time, it will feel impossible to even consider the fact that you will laugh again or feel happy or hope for a future. You will find yourself waging an internal battle trying to reconcile the moments from your journey that gave you peace and joy with the sheer weight of the sorrow you bear. You might find that these moments of joy and peace do not make sense to the outside world, and that is okay because the peace and joy you find in the middle of heartbreak is for you.
The moment you see your child for the first time is the epitome of joy. In that moment, all that exists is you and the little life you created. Hold on to that moment, be present in it, and rest in the joy of it. I know the joy is not unmitigated because of the weight of all that comes with it, but it is joy nonetheless. I distinctly remember the joy I felt seeing how much my babies looked like my husband and I, and how much they favored one another. I remember the small moments of peace I had when my babies settled into me as they laid on my chest. So much about my story is broken and wrong, but the moments of joy in becoming their mother, studying their features, and being present for the entirety of their lives sustains me on the bad days.
Hope came later than joy and peace for me. Losing my babies made me feel as though I had lost all hope for a future worth experiencing. I felt as though any future to come would pale in comparison to the future I had imagined. I still planned to have a future, but I saw it through a pessimistic lens. Over time, I began to have hope for a future that I could endure. A future I could endure turned into a future I might want. That future turned into a future I actively wanted to plan for and enjoy. It took time and patience and trust. It took allowing myself to embrace the moments of hope, joy, and peace along the way.
Hope, joy, and peace are not able to erase the pain of every emotion that came before them. They are simply rest points, meant to help you endure and find the good in the ultimate heartbreak. These emotions come to you in their own time, and sometimes you are not ready for them. Remember that laughing, feeling joy, experiencing peace, or having hope does not negate the love for your baby. It does not mean you have moved on or forgotten. It means that you are integrating your baby and your grief into your life and your future. The goal is not to never grief. The goal is to integrate your grief into your life to the point that it fits with the hope, joy, and peace that is meant for you.
As you can see, you will likely experience a vast variety of big emotions. It is okay to need help processing or managing the feelings you are experiencing. This is not an easy journey, and the emotional toll it can take is heavy. Remember that these emotions are neither good nor bad. They are valid and normal. They are not a judgment on you as a parent nor are they a judgment on the depths of your love and grief. They are simply a manifestation, at a given point in time, of all that has happened and is happening to you.