Pregnancy, whether uncomplicated or high risk, can take a toll on the mental health of parents. The transition into parenthood or into the bereavement period following a terminal prenatal diagnosis and loss of a baby or babies comes with a new set of needs and challenges that can be difficult and overwhelming for parents.
Perinatal Mood and Anxiety Disorders
Perinatal mood and anxiety disorders like depression, anxiety, bipolar disorder, obsessive compulsive disorder, and post traumatic stress disorder can happen to both men and women during pregnancy, the postpartum period, and/or following diagnosis and loss of their baby or babies.
In recent years, more support resources have become available for parents experiencing perinatal mood and anxiety disorders, and the taboo is beginning to lift. As much as the conversation about pregnancy and postpartum mental health is changing and improving, there is still a gap in the framework of care. There is a lack of knowledge and support for the unique mental health challenges facing families who have a terminal prenatal diagnosis, and as a result, do not get to take home a living child or children.
These families still experience the pregnancy process, labor and delivery, and then the transition into the postpartum period. Women who have delivered a baby or babies with a terminal prenatal diagnosis still have all the mental, physical, and hormonal effects of pregnancy and giving birth. However, they have the added complication of grief and mourning.
Pregnancy and postpartum mental health has been a taboo topic of conversation for a long time, and the same can be said for the bereavement period following a terminal prenatal diagnosis and the loss of a pregnancy or infant. Facing these realities is such a complicated and overwhelming emotional and physical experience that it can be easy to dismiss signs of mental health issues as simply part of the grieving process.
Bereavement, Grief, and Mourning
There is so much misinformation about what the bereavement period is, how long it should last, and what it should look like, that it isn’t surprising how often postpartum mental health issues are missed in loss parents. Even the words bereavement, mourning, and grief are often used interchangeably when they, in fact, are not interchangeable. They each have a distinct meaning that explains a lot about the whole experience of carrying to term and losing a baby or babies.
Bereavement is derived from an Old English word meaning to deprive or take away by force. Bereavement is not an emotion or action. It is simply the state of having lost something or someone precious. Following diagnosis and loss, parents enter a period of bereavement, and as a result, they have a new set of experiences and needs. Grief and mourning take place during the bereavement period.
Grief is the internal experience of loss, and it includes thoughts and feelings. Grief is an emotion, and grieving is the deep mental suffering endured by an individual.
Mourning is the external expression of grief. It is grief in motion, and it is social in nature. This includes outward signs like wearing black, planning and attending a funeral, or externally processing.
Mourning is how we as loss parents work through our grief. Grief and mourning may begin at the moment of diagnosis as you begin to feel the weight of what it means. The carrying to term journey is unique in its timeline because your grief begins at diagnosis, alternates between grieving the diagnosis and anticipating the loss, and then shifts into intense grief and mourning following the loss your baby or babies. Your bereavement period will likely be longer than you expect or what the world tells you is normal.
It is not uncommon to find yourself hoping against all odds that the diagnosis is wrong and that your baby or babies will be born perfect. You’re simply trying to process information that your brain finds impossible to comprehend. As parents, we want the best for our children so in the wake of a terminal diagnosis, it makes sense to hope that the circumstances might change. It is important to not let this hope prevent you from coming to terms with the diagnosis and allowing yourself to grieve and mourn.
When parents do not mourn, they can get stuck in their grief which leads to complicated or persistent grief. This is when the intense feelings and emotions following diagnosis and loss don’t lessen, and the parent becomes unable to move forward. This grief is so intense, consuming, and long lasting that the parent is incapable of resuming his or her own life. They may even begin to believe that their future is limited. Grief is usually only termed complicated or persistent grief a full year after the date of loss.
Like pregnancy and postpartum mental health issues, grief and complicated grief can manifest as depression, anxiety, post traumatic stress disorder, sleep disturbances, substance abuse, and suicidal ideation. I would argue that, for families facing a terminal prenatal diagnosis and the loss of their baby or babies, complicated grief should be classified as a perinatal mood and anxiety disorder.
What To Look For
The best way to distinguish between mental health issues and normal grief and mourning is to know what to look for. Though grief and mourning do not follow a set timeline, pattern, or set of rules, the process of grieving and mourning usually begins to lessen over time. It starts out acute, intense, and overwhelming, and it slowly becomes more manageable, predictable, and less frequent. Though we loss parents never truly stop grieving our loss or losses, we do become better equipped at handling the emotions that happen when we remember or feel triggered.
Perinatal mood and anxiety disorders and complicated grief are prolonged, intense, and overwhelming. They are marked by thoughts and behaviors that are ego-dystonic, or in conflict with who the person was before the diagnosis and loss and in conflict with the person’s ideal self-image. These thoughts and behaviors include dreams, impulses, compulsive behaviors, desires, and intrusive thoughts.
Intrusive or obsessive thoughts are unwelcome, involuntary, and often repetitive thoughts, mental images, worries, or ideas that are deeply distressing. They can feel impossible to manage or eliminate, and they can cause anxiety. Intrusive thoughts are a common symptom of perinatal mood and anxiety disorders.
Other symptoms that indicate a mental health issue beyond grief and mourning include re-experiencing the day of diagnosis or the birth and death of the baby or babies. Re-experiencing these events can take the form of flashbacks or nightmares and can cause severe feelings of distress or physical reactions like sweating, nausea, or phantom pain.
It is not uncommon to experience irritability, angry outbursts, hair-trigger emotions, difficulty concentrating, increased anxiety, feeling jumpy or easily startled, a sense of hyper-vigilance, or sleep disturbances, including the inability to sleep or sleeping too much, when dealing with perinatal mood and anxiety disorders or complicated grief.
Avoidance is another common symptom. You may find yourself avoiding anything, anyone, or anywhere that might make you remember the day of diagnosis or the birth and death of your baby or babies. Additionally, you may find yourself feeling detached from others, emotionally numb, or experience loss of interest in your previous passions. These can be a normal part of grieving, but if they last for a prolonged period of time, it could be an indicator of complicated grief.
In the bereavement period, as a parent, it is not unusual to feel a sense of guilt, shame, self-blaming, betrayal, or blaming of others. As parents, we can’t help but feel some sense of responsibility to our child or children. However, it is so important to remember that you did not do anything wrong. You did not cause your child’s diagnosis. You did not cause your child’s death. If you find yourself unable to talk through and process feelings of guilt, shame, and blaming, you may be dealing with complicated grief or a perinatal mood and anxiety disorder.
If you find yourself struggling with substance abuse in the wake of the diagnosis or loss of your baby or babies, it is imperative that you communicate and seek help immediately. If you notice this behavior in your significant other, reach out for support in caring for them. The same goes for a sense of hopelessness and suicidal ideation. If your significant other expresses these feelings, do not hesitate to seek out help from a doctor or mental health professional. If you are struggling with these feelings, communicate with your significant other, a trusted family member, or medical professional immediately.
For those of you who have living children at home, it is important to know that those children can also experience post traumatic stress as a result of the loss of their sibling or siblings. Signs of post traumatic stress in children include an intense fear of being away from mom and/or dad, regression of skills like toilet training and language, sleep disturbances, acting out their trauma in play, new fears and anxieties (even ones unrelated to the loss), physical aches and pains of unknown origin, and irritability or aggression. If you notice these behaviors in your child, seek support from their pediatrician or a therapist who works with children or adolescents.
Mental health in the wake of loss can feel scary and overwhelming. It might seem as though you are alone in it or that you are unable support your significant other. You are not alone if you are experiencing any of the above behaviors, thought patterns, or changes in personality. It is imperative that you communicate if you feel yourself identifying with this information. Receiving a terminal prenatal diagnosis, carrying the pregnancy to term, and delivering your baby is going to have an effect on your mental health.
Trust that your spouse and your care team want to support you and care for you well. Asking for help is often the most freeing and empowering thing you can do for yourself. Talk to your significant other or doctor about counseling, support groups, medication, or other ways you would feel best supported. There is nothing wrong with needing medication if you and your support team feel as though it would help you. Medication can take time and adjustments before you feel right so be open and communicative with your doctor about any physical side effects experienced.
If you are watching your significant other struggle with these behaviors, thought patterns, and changes in personality, the best thing you can do is be supportive. Come from a place of no judgment. Validate that what he or she is feeling is perfectly normal. Express that there is support and help available, and that you want to help them find the right support.
Connect him or her with resources like counseling, support groups, doctors, or psychiatric help. Encourage him or her to find a community of people who have experienced a similar diagnosis and/or the loss of their baby or babies.
Consider reaching out to a supportive family member like a trusted parent or sibling. Ask for specific help like meals, childcare for living children, a self-care day for him or her, or simply to serve as a reminder that it is okay to seek help and resources. If you aren't sure what tangible support you need, I've written a helpful guide for you to share with your friends and family to help them better understand how to care for you. You can find that post here.
A terminal prenatal diagnosis and all that follows is an indescribably difficult journey. We understand that you could have all the tools in the world and feel fully equipped for this process and still find yourself experiencing a perinatal mood and anxiety disorder or complicated grief. There is absolutely nothing wrong with you if you experience these behaviors or thoughts. It is normal, and there is help available. It is our hope that shedding light on the differences between grief, mourning, and perinatal mood and anxieties disorders will help you feel informed, capable, and less alone if you find yourself or your significant other wrestling with these issues.
“Complicated grief.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 5 Oct. 2017, www.mayoclinic.org/diseases-conditions/complicated-grief/symptoms-causes/syc-20360374.
The Pregnancy and Postpartum Health Alliance of Texas. www.pphatx.org/.
Wiegartz, Pamela S., and Kevin L. Gyoerkoe. The pregnancy and postpartum anxiety workbook: practical skills to help you overcome anxiety, worry, panic attacks, obsessions and compulsions. New Harbinger Publ., 2009.