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FOR FAMILIES WHO HAVE EXPERIENCED THE LOSS OF A CHILD TO A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION, PREGNANCY CAN NEVER BE THE SAME.
As different as this new pregnancy may be, the two pregnancies are intertwined. The experience they had before, of receiving a diagnosis, carrying that pregnancy to term, delivering their child, and then saying goodbye to that baby affects everything. These parents are changed irrevocably by the beauty and the heartbreak of their experience.
Their pregnancy after loss may be perfectly healthy and smooth, but the joy and the future cannot be separated from the grief and the past. The grief does not mean that there is no room for joy. They lost a child, and they are creating another precious one. They grieve the child they lost, and they celebrate the one that is coming. Grief is a complicated emotion because it can leave a family with fear and sorrow, but it can also create a perspective that gives families a whole new understanding of the precious and not-promised nature of pregnancy and childbirth.
Families who have experienced the loss of a child shortly after their birth know too much to ever take a healthy pregnancy for granted. Yet, they know too much to simply trust the process without research, questions, caution, and reassurance. As medical professionals, they need you to be comfortable in their discomfort. They need you to understand their fear. They need you to empathize with the complicated range of emotions they are struggling to navigate. They need you to support the fact that they can grieve and celebrate.
As the medical professionals walking alongside families on their pregnancy after-loss journey, you are a vital part of how parents feel validated, supported, understood, and prepared for the months ahead and the transition into life with a new child.
You are a grounding point- a source of knowledge and comfort. Your patients need to feel comfortable with you, and they need to know that you are willing to walk the minefield of their loss, their present, and their future.
To help you care well for your patients and know what they need most during pregnancy after loss, we have created the S.P.A.R.E. model. S.P.A.R.E. stands for support, patience, acknowledgment, respect, and empathy. By implementing this model into your practice, you are demonstrating that you are sensitive to your patient’s unique circumstances, open and willing to walk alongside them, and aware that they have specific needs worth meeting.
“S.P.A.R.E. stands for support, patience, acknowledgement, respect, and empathy.”
SUPPORT
When it comes to support, parents need a variety of ongoing support throughout the pregnancy-after-loss journey. Primarily, parents will look to experts like you, the medical professionals providing care to them. Whether you are the doctor, nurse, or other professional who provided care to them during their carrying to term pregnancy or you are new to their care team, they will look to you for information, assurance, and a source of confidence and comfort.
We know that you cannot offer guarantees to these families, as much as you might wish that you could. These families are not looking for guarantees or promises for their future. They are looking for clear information and assurances at each appointment along the way. It can be very difficult to believe that a pregnancy is going well and that there is no diagnosis when that has not been their experience in the past. You can support these parents by reassuring them that this baby is healthy. Give them insight and specifics like how strong and perfect the heartbeat is or how perfectly formed and developed their child is at each stage. These small reminders and comforts have a huge impact on families as they navigate moving forward while still carrying the pain and grief of losing a child.
You can support your patient by encouraging their significant other to have an active role in this pregnancy. Let them know they are welcome at all appointments and ultrasounds. Give them the space to voice their own worries and ask the questions they need answered to have some sense of peace in the process. We wrote an article about including dads in pregnancy and childbirth, and though that post was specifically talking about carrying-to-term pregnancies and deliveries, the wisdom holds true for pregnancy after loss. To learn more specifics about encouraging and including dads during pregnancy and childbirth, read the article found here.
You can also offer support to your patient by being aware of their needs and by informing them of the support resources available to them locally. There are many forms of counseling and specialized support for families navigating pregnancy after loss. Validate and normalize counseling and support groups for your patient. Provide them with the names and information of local counselors, groups, and organizations who can help them process, grieve, and celebrate each step of the way.
Finally, you can support your patient by being aware that your patient is at a higher risk for experiencing a perinatal or postpartum mood disorder during pregnancy after loss. Prior loss is a risk factor for postpartum depression, anxiety, post-traumatic stress disorder, and intrusive thoughts. Support your patient by understanding the difference between these disorders and normal grief. Provide a safe space where parents can express what they are experiencing without fear of being dismissed or getting into trouble. Many parents struggle with the intense fear that this baby will die, too. They may unwillingly picture that happening, and it does not mean that they will harm their child. Rather, it is a lingering effect of trauma and the complicated nature of a subsequent pregnancy. Provide these parents with specialized support resources, organizations, and counseling.
PATIENCE
Pregnancy after loss can be difficult to navigate for parents. Every day can be a jumble of emotions, worries, excitement, newness, and grief. Each day may bring with it new challenges and experiences, some expected and unexpected. As parents navigate this new pregnancy, they need you to be patient with them.
Many parents will be scared, and as a result, they will likely do a lot of research and ask a lot of questions. Give them the time, space, and permission to ask all of their questions and make an effort to listen and answer each one. Sometimes asking questions is not really about the questions themselves. It is about knowing that your doctor is willing to listen, process, and seek to understand where you are emotionally, what you are fearing, and what you need from them along the way.
Medical professionals, be patient with these parents. Hear the worry, grief, and deep love that lies beneath the questions. Your permission has tremendous power in the lives of parents, so use it to ensure that your patient feels like they can trust you and lean on your expertise in the months to come.
Patience also means taking the time to fully explain what is happening at each appointment or ultrasound and what they can expect at the next appointment or ultrasound. During pregnancy after loss, parents may be more prone to jumping to conclusions or reading into something. Every look, furrowed brow, or sigh made by a sonographer can cause panic in a family who has experienced a sonographer leaving to get the doctor in silence following an ultrasound. These families cannot help but feel as though they are waiting for the other shoe to drop. Be patient, and speak positive news to them as much as possible.
“Medical professionals, be patient with these parents. Hear the worry, grief, and deep love that lies beneath the questions. Your permission has tremendous power in the lives of parents, so use it to ensure that your patient feels like they can trust you and lean on your expertise in the months to come.”
Your patient will likely anticipate and look forward to every appointment throughout her pregnancy after loss. Her time with you is a mile marker- a way to break a long and nerve-racking experience into manageable chunks of time. You are her chance to hear her baby’s heartbeat, see their little image moving around, and learn about the health and development of her child. She may feel out of control in her own body, and her appointments with you may help her feel some sense of hope and control.
If you can, carve out a little extra time for these patients. Be intentional in listening and conversing with her. Be patient with her nervousness, research, and questions. Let her have a few extra moments during the ultrasound and send her home with a few extra sonogram photos to mark the occasion.
She needs you to be patient and understanding because, in all likelihood, she is struggling to be patient and understanding with herself. The last thing she wants to do is tax your time or energy, so let her know that you understand what she needs and are willing to walk alongside her.
ACKNOWLEDGMENT
Acknowledgment is a gift to grieving parents. When you acknowledge your patient’s prior experience, you are telling her that it matters to you. It tells her that her baby’s life had impact, that you understand what she needs moving forward, and that you are not expecting her to forget what she has been through. Acknowledging a woman’s prior loss during a subsequent pregnancy is not a difficult or costly practice to implement.
Acknowledgment starts with your front desk staff. Create and implement or utilize an existing system of chart alerts that notify your front desk staff of the prior loss. These chart alerts protect a grieving mother from having to answer well-meaning but painful questions. They protect her from having to recite her entire pregnancy history at every appointment. They help signify to staff that they should pause, slow down, and review her chart before calling to deliver test results or bringing her back to an exam room to begin her appointment.
Doctors, nurses, midwives, and sonographers should take a moment to review the chart before entering a patient’s room. Be aware of the circumstances, so that you can offer the right support and navigate the appointment with patience, respect, and empathy. This also allows you to ask specific questions about her prior history without her having to delve back into all the details. It also protects a mother from the well-meaning question of whether or not this is her first pregnancy.
Acknowledgment, like patience, means understanding that your patient is bringing with her the experiences of the past. Offer what you can to help this pregnancy be as worry-free as possible. There are several practices you can put in place for women navigating a pregnancy after loss that go a long way toward supporting her emotional needs:
- longer appointment times
- the option to wait directly in an exam room
- extra time during an ultrasound
- the permission to call any time she needs to with questions or concerns
- extra appointments or ultrasounds
- the opportunity to use a Doppler at each appointment
Not every patient will need or want these extra considerations, and that is okay. Simply having such considerations available goes a long way toward making your patient feel acknowledged, supported, and understood.
RESPECT
As medical professionals, we know that you respect your patients. You would not be in this line of work if you did not truly want to help people, and we are not here with the belief that you do not and would not respect your patient during a pregnancy after loss. Rather, what we mean by respect is respect for the overwhelming and consuming nature of grief.
Respect the trauma she has been through and the lingering effects of it.
Respect the fear she carries daily.
Respect the intense battle she is waging for control.
Respect that she is fighting to live in the tension of the past and the present; the grief and the joy.
Respect that grief can rob her of the ability to be positive and focus on the here and now.
Respect that grief and her loss may make it difficult to connect, bond, and prepare for this baby.
Respect that grief can challenge and distort the reality of what is happening. Good news may never feel fully trustworthy.
Respect her needs for a birth plan, even if it changes completely during delivery. If it brings her comfort and a sense of control, respect that.
Respect that her response to this experience is likely out of her control. Grief changes a person, and it takes time to learn how to manage and navigate that change.
She may not be who she thought she would be during this pregnancy. Respect the overwhelming and consuming nature of grief and meet her where she is at each step of the process.
EMPATHY
Empathy is where you get to put your respect for her grief into action. She may be feeling isolated and disconnected, so having her doctor step in and really connect with her on a personal and emotional level is the ultimate kind of support.
Sympathy and empathy are often confused, and while sympathy is caring about and having concern for a person and what they are going through, empathy is deeper. Empathy is the act of entering in and sitting with someone in their experience. It is putting aside your own feelings and judgments about how you would handle the situation differently. Empathy is listening to someone communicate their feelings to you and trying to internalize those feelings. It is about putting yourself in their shoes and looking at it from their perspective.
You may not understand why they are grieving the way they are. You may not understand the manifestation of their overwhelming emotions. You may not understand their decisions. They may be operating in an entirely different manner than any other patient you have had before. That is okay. You do not have to fully understand; you just have to try.
“Empathy is a powerful tool for connection. It fosters a sense of support and lessens feelings of isolation. Communicating well with patients during pregnancy after loss is one of the best things you can do to support them.”
When your patient brings up concerns or questions that seem irrelevant or pessimistic or confusing to you, do not dismiss those concerns or meet their concerns with the encouragement to focus on the present. In many cases, that dismissal or call to focus on the present has the opposite effect you intended. It can be damaging and create a sense of disconnect or distrust between you and your patient. Instead, take a moment to listen. Seek to understand the root of the concern or question. Empathize. Offer validation, and then offer advice.
Empathy is a powerful tool for connection. It fosters a sense of support and lessens feelings of isolation. Communicating well with patients during pregnancy after loss is one of the best things you can do to support them. No one expects you to communicate perfectly with grieving parents. As much as we wish there was, there is no specific language or guidebook for this. It really boils down to support, patience, acknowledgment, respect, and empathy. That is the foundation of communicating well with parents facing pregnancy after loss.
Medical professionals, we know you have many patients and too little time. Implementing the S.P.A.R.E. model may take time and practice, and that is okay. Even implementing one of these practices into your care for families facing pregnancy after loss has the potential to change their entire experience. They will look to you for comfort, confidence, and information. They will look forward to each appointment and lean on your wisdom. Seek to understand the impact their carrying-to-term pregnancy had and still has.
What we are calling you to is not radical. You already do this in many ways. We encourage you to be intentional as you support the emotional and physical needs of your patient, practice patience with your patient’s fears and questions, acknowledge her experiences, respect the toll grief takes, and empathize with her along the way.