Parents, your world has been turned upside down by the news that your baby has a life-limiting condition. After receiving the diagnosis, you have been given new terminology and medical information to process. You have been and will be faced with making complicated decisions. You are beginning to wrap your heads around pregnancy continuation and a care plan that includes more doctor’s appointments, specialists, and questions than you ever imagined navigating when you first learned of your pregnancy.
There are very real and important practicalities to consider following a prenatal diagnosis of a life-limiting condition and the news that you will lose your baby. You will navigate complicated situations. You will advocate for yourself and your baby. You will work with medical professionals to provide the best care to you and your baby. You will bear the weight of the expectations of real life, relationships, and work. You will experience anticipatory grief. You will face a loss so devastating that no other loss compares to it. There is no doubt that what is being asked of you is heavy, complex, and difficult. This process is hard, but it is also rewarding.
While the decision-making, planning, care plans, and the physical nature of pregnancy and the diagnosis are important, your experience as parents and as a family is worthy of attention and care, too. It is true that pregnancy continuation is hard, emotionally-nuanced, and complicated, but do not believe that it is without joy. It can be easy to get lost in the chaos, practicalities, and medical aspects. It can be easy to lose sight of what is present in each moment because you are anticipating what is to come.
Parents, it can be easy to believe that all that awaits you is confusion, difficulties, suffering, grief, and ultimately, loss. While it is true that what you are facing is unfair and devastating- a truly broken reality- there is beauty, joy, peace, and unceasing and unwavering love to be found in this process, too.
Truly, I wish this pain was not your pain. I wish you could have a lifetime with your son or daughter. I wish this was not your story. But, we do not get to choose our circumstances, we only get to choose how we write the story that follows. There is no choice following a prenatal diagnosis of a life-limiting condition that will get you the outcome you desire: taking a perfectly healthy baby home with you to raise and spend a lifetime with. While the outcome of pregnancy continuation is still loss, this choice allows you to embrace and celebrate your baby as parents, as a family, and as a community.
This is not an easy choice nor is it an easy process, but it is a choice that you will not regret. A parent never regrets the time they spend with their child. A parent never regrets the chance to know their son or daughter, no matter how fleeting that time may be. A parent never regrets making memories with their family. A parent never regrets the legacy of love each child creates.
Pregnancy continuation is not about waiting for death. It is about living and loving and celebrating life, no matter how short that life may be. You have every right to embrace and celebrate each and every moment, exactly how you choose to. There is no right way to love your baby. There is no right way to embrace the time you have. There is no right way to celebrate life in light of what is to come. There are only the ways that are right for you, your baby, and your family. Only you can determine what embracing and celebrating your baby looks like, I simply encourage you to do three things: be intentional, make memories, and give yourself permission to experience joy.
Being intentional means making the deliberate, conscious decision to be present in the process. When you are intentional in your focus and with your time, you are holding space for what matters most. Start by focusing on what you do have, right now, in this moment. Right now, you have your baby. Does your pregnancy and future look like you imagined or wished? No, but that does not mean that your pregnancy and your time with this baby are without good moments, laughter, joy, and love.
The ferocity and depth of your love for this baby has not changed nor has it been diminished. You do not have to change how you love or how you parent this baby. What has changed are the circumstances that now limit the time you get with this baby, and the only thing you can control in light of that is how you spend this time.
So, give yourself the permission to let go of what does not matter right now. Put aside the things that can wait. Ask your friends and family to help you with anything and everything they can to free up your time and energy. Being present with your baby during pregnancy and after delivery is the greatest act of love and parenting. It is the most important thing you can do.
Being intentional is not without difficulty, and if it feels emotional or overwhelming, that is valid, and you are not alone in that feeling. Being intentional is a calculated risk because you are opening your heart, knowing full well that you will be hurt in the end. This is an experience unlike any other, so if being intentional does not come easy to you, it is okay. Be patient with yourself. Keep trying. Carve out tiny spaces in your day- simple moments- where you stop and engage. Count kicks. Learn the intricacies of your baby’s movements and habits. Talk to your baby. Place a hand on your pregnant belly- or your significant other’s pregnant belly- and just be still and feel.
Being intentional is simply about being present. It is about prioritizing this time and your need to be with your baby. It is about embracing and accepting the emotions as they come throughout this process. It is okay and normal to experience a range of emotions. Being intentional does not mean you that will not navigate feelings of numbness, anger, sadness, frustration, confusion, anxiety, hope, peace, or even joy. It means that you simply acknowledge how you are feeling, let yourself experience those feelings, and then use those feelings to guide you as you plan for the future.
Making memories is a practical application of intentional living in this process. The memories you make with your baby during pregnancy and the time you will have after delivery are yours for a lifetime. No one can change your memories. No one can take your memories from you. Your memories are priceless treasures. They are what remains of your time as a family.
One of the most painful realities of infant loss is that time and the ability to make memories are finite. Losing a baby is the loss of a future, and by making memories and being intentional, you are giving yourself something to look back on as you navigate life after loss. Create as many memories as you can. Make as many keepsake items as you can and want to.
Do the things now, in pregnancy and then after delivery, that you will need later. These are the memories that will serve to remind you of the love, the joy, and the very real fact that your baby existed. There will come a time when your mind is consumed by the loss of him or her. Your memories will serve as the anchor, holding you to the moments you carried and held your baby.
There will come a time when the details start to fade or feel less accessible or less tangible. Your memories and your keepsakes will serve to remind you of all that you endured, of how intensely you loved, and of how incredible and life-changing the moments you had with your child were. Your memories and keepsakes are not designed to replace having a child in your arms. They are there to help you bear the weight of a loss of this magnitude. Being able to pull out photos or journals or precious imprints of tiny hands and feet will give you something to hold and help you remember.
Making memories and keepsakes may feel overwhelming, emotional, and even complicated, but remember that this desire to do so is no different than the desire that parents feel when making memories in a pregnancy without a diagnosis. This is a natural part of creating a life, becoming parents, and building a legacy of love for that baby. There is nothing morbid or broken or wrong about documenting your experience and making memories with your baby.
Your pregnancy, your story, and your child are no less worthy and no more taboo than any other pregnancy or any other experience of a parent loving a child.
Take the time to do the things that matter to you and that you have always wanted to do with your family. While pregnant, go to the park and swing on the swings. Visit the zoo, go to the movies, or enjoy a sporting event you love. Take a trip to the place that means something to you and your family.
Take pictures of every stage and every milestone and every event. Journal all the little details that you will want to remember. Talk to your baby. Listen music and dance. Have a celebration of life and invite your community of family and friends into the beauty that is the life you have created and the love you are embracing.
After delivery, spend the time you will have with your baby making more memories. Take pictures as a family. Marvel at how much he or she looks like you or your significant other or his or her brother(s) or sister(s). Invite your family and friends to see the little wonder of a life that you created.
Hold your baby for as long as you want to. Bathe and dress him or her in an outfit of your choosing. Read your favorite childhood books. Sing the songs you always pictured singing as you rocked him or her to sleep. Study his or her features and take pictures of the details. Little nose. Tiny fingers and toes. Save a lock of hair. Take many sets of handprints and footprints. Make molds of his or her hands and feet.
This time is precious and beautiful and worthy of being remembered. Yes, the emotions will be complicated. There will be grief and joy. There will be beauty and broken. There will be hello and goodbye. Yes, this is a complicated and complex experience, but it is the most natural thing in the world to hold your baby and want to fit a lifetime of parenting and memories into these moments.
The choice you have made to continue your pregnancy is not about waiting for death. It is about giving yourself and your baby the gift of time and memories. While you cannot change the diagnosis, and you cannot control the future, prognosis, or outcome, you do get to choose how you spend this time. Time is precious. Your baby is precious. Your memories are precious. Make as many memories as you can in the time you are given.
Give yourself permission to experience joy
There will be moments, news, and experiences that feel good in this process. Celebrate them without hesitation or reservation. Even the smallest of victories is worthy of being recognized and celebrated. You deserve to experience joy. While this diagnosis and the impending loss of your baby is life-changing in the worst way, you are not sentenced to a life without joy. You are allowed to smile as you carry this baby to term. You are allowed to laugh when you feel kicks. You are allowed to feel unadulterated joy when you hold this baby for the first time and fall deeply in love with the miracle you brought into this world.
You are allowed to enjoy time with your significant other, your family, and your friends throughout pregnancy and in life after loss. You are allowed to find yourself again and live and thrive despite all that you have been through.
The diagnosis, the prognosis, and the loss of your child are broken experiences. Your child is not broken. You are not broken. You may never feel whole without your son or daughter, but you are not broken or imprisoned by this loss. You are free to experience joy. You are free to love and remember your baby. You are free to share your story and feel however you feel in the process. You have the full and free permission to grieve and live a life that includes joy.
So, allow yourself to experience joy and celebrate the good.
Celebrate the gift of a wonderful and supportive care team of medical professionals. Celebrate when you advocate for yourself and your baby by speaking up, offering insight, or finding a different provider to work with. Celebrate when your network of support steps up to meet your needs, and celebrate yourself for asking for that help. Celebrate milestones in pregnancy. Celebrate a healthy, strong heartbeat and the visuals of intrauterine acrobatics on display during an ultrasound.
Celebrate the little joys as life continues. Celebrate successes at work. Celebrate finding a new restaurant or cooking a delicious meal. Celebrate the achievements of your kids as they live life through this process. Celebrate finding balance. Celebrate accepting your emotions as they come and recognizing your needs for self-care.
Celebrate your precious baby. Today. Tomorrow. Always.
You are worthy of joy, and your baby is worthy of your joy. You are worthy of grief, and your baby is worthy of being grieved. Grief and joy are both rooted in a deep, unconditional, and unceasing love, and there is no deeper, more unconditional, or unceasing love than that of a parent for a child.