How To Navigate a Prenatal Diagnosis in a Work Environment

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RETURNING TO WORK AFTER RECEIVING A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION CAN BE AN OVERWHELMING AND DAUNTING EXPERIENCE.

Though navigating a prenatal diagnosis and pregnancy continuation in a work environment is not the most comfortable experience, we encourage you to lean into the discomfort, anxiety, and unknown that may accompany informing your employer and coworkers about the diagnosis and prognosis.

Your employer and your coworkers are a part of your everyday life, and you will be spending a significant amount of time working alongside them over the coming months. When you share the news, you are creating the opportunity to include your colleagues in your network of support throughout the pregnancy as well as the postpartum and bereavement periods. Not only is sharing the news a chance for your coworkers to walk alongside you and offer support, it is also a form of self-care and advocacy.

When you decide to inform your employer and co-workers about the diagnosis and prognosis, you are advocating for yourself and your needs. You get to choose how and when to share the news. You get to choose the information you share. You get to share how you are doing, feeling, and processing the news. You get to create boundaries for how you want your carrying to term experience to be in your work environment. You get to equip your colleagues to support you in helpful and meaningful ways.

If this feels daunting or like an added burden, that is an understandable, normal, and valid reaction. Nothing about receiving a prenatal diagnosis of a life-limiting condition is easy or fair. You may not feel prepared or as though you have the emotional or mental bandwidth to educate those around you. You may also be worried about how your employer and coworkers will respond or if it is even possible for your work environment to feel safe and supportive throughout this process.

While you cannot guarantee their support, understanding, or empathy, you do have the ability and opportunity to encourage and equip your employer and coworkers to provide you with a work environment that is as understanding and supportive as possible throughout the carrying to term process.

When you inform your employer and coworkers about the diagnosis and prognosis, you get to share that information on your terms. Start by considering what information you want to share and how you want to share it. Next, offer your colleagues insight into your emotions and how you are processing this news. Then, establish boundaries to protect your emotional and mental well-being, and provide resources to help your colleagues support you well.

“When you inform your employer and coworkers about the diagnosis and prognosis, you get to share that information on your terms. Start by considering what information you want to share and how you want to share it. Next, offer your colleagues insight into your emotions and how you are processing this news. Then, establish boundaries to protect your emotional and mental well-being, and provide resources to help your colleagues support you well.”

SHARE THE NEWS ON YOUR TERMS

Whether you are the pregnant mother or her significant other, informing your colleagues of your baby’s diagnosis and prognosis is an important part of the process. Both you and your significant other are affected by the news, and both of you will be making hard decisions, processing information, attending doctor’s appointments, and navigating memory-making with your child. You will both need the support and understanding of your employer and coworkers in the months ahead.

When you are ready to share the news at work, start by taking some time to consider your needs and preferences for your work environment moving forward. It may be helpful to create a list of things that are important for your colleagues to know and what responses they could have that would feel supportive before actually sharing the news.

Here are some questions to consider and process through before sharing the news at work:

At what point in the pregnancy do you want to share the news with your employer? With your colleagues?
How much information about the diagnosis and prognosis do you want to share?
Are there some colleagues who you want to share more information with?
Are there some colleagues who you want to share less information with?
What kind of support do you want from your colleagues?
Is there anything that you do not want your colleagues to do, say, or offer as support?
Do you want your colleagues to avoid the topic or are you open to answering questions and talking about the experience and your baby?
How do you envision telling your employer and colleagues about the diagnosis and prognosis?

Here are some policy and logistical questions to consider as well:

What kind of special considerations do you need at work?
- Will you need extra time off for appointments?
- Will you need a change in responsibilities?
- Will you need to offload any projects or tasks for the duration of the pregnancy and bereavement period?
What are your company’s policies regarding maternity/paternity leave for pregnancy loss or infant death?
Does your company offer bereavement leave? Can this be taken in addition to maternity/paternity leave?
Do your benefits cover some of the specialized support you might need like genetic testing or professional counseling?
What are your options regarding returning to work following the death of your baby? Are you able to work from home, do a phased return to work, work flexible hours, or have a reduced workload?

“When you are ready to share the news at work, start by taking some time to consider your needs and preferences for your work environment moving forward. It may be helpful to create a list of things that are important for your colleagues to know and what responses they could have that would feel supportive before actually sharing the news.”

Once you have had the chance to consider your needs and preferences, it is time to formulate a plan for sharing the news with your colleagues.

If your job has a human resources department, it may be helpful to reach out to them before telling your direct supervisor and coworkers. The human resources department is an excellent support for employees, and they can help you navigate this process and ensure that you are aware of your company’s policies and any support available to you. They are there to advocate for your rights and needs, especially in complicated and difficult situations.

Human resources may also have recommendations for the best way to approach informing your direct supervisor and your colleagues about the diagnosis and prognosis. They can help you explain your needs and any modifications to your responsibilities as a result.

If you do not have access to a human resources department, start by sharing the news with your direct supervisor. They can help you create a plan for the months ahead, make sure you have the support you need so that you can take time off for appointments, and they can help you formulate a plan for sharing the news with your coworkers. When you are ready, inform your employer or human resources department by sending an email with the information necessary to get the conversation started. Then, you can schedule a time, when you are ready and comfortable, to sit down with them and discuss in more detail. This allows you both time to process and prepare for a more formal discussion.

Once you have talked with your employer and human resources department, share the news with your coworkers. Again, email is likely going to be the most convenient, and in many ways, the most emotionally safe way to communicate the diagnosis and prognosis. Email allows you to carefully consider your words, make any edits, and provide the information you want your colleagues to have, such as the specific diagnosis terminology, insight into your emotions, your boundaries, the kind of support you need, and any resources that might be helpful to your colleagues in the coming months.

By sending an email, you are allowing your coworkers the time to process, research, and carefully consider their own response to you. This protects you both from those well-intentioned, yet inadvertently painful responses like clichés, questions you are not ready to answer, or platitudes aimed at making you feel better.

OFFER INSIGHTS INTO YOUR EMOTIONS AND PROCESSING

Maintaining everyday responsibilities, like work, in light of a prenatal diagnosis of a life-limiting condition can be difficult, overwhelming, and emotionally draining. You are not going to be able to fully predict how you will react or feel each step of the carrying to term process. Parents facing such a loss experience a complicated and varying range of emotions following diagnosis. These emotions can be unpredictable, unsettling, and inconvenient at times. This means that your emotions may express themselves at inopportune times, like at work.

So, when you inform your coworkers, you should include clear information about the diagnosis, prognosis, and your needs moving forward, and you should also consider including insights into your own emotional response and what this process is like for you. People cannot understand fully what they have not experienced for themselves, so when you share information about your personal experience, it helps inform those around you, and it gives them a better understanding of how to support you.

You may want to consider preparing your employer and coworkers for the reality that you may cry or experience new anxieties or appear numb to the situation. You may still laugh at things that are really funny. You may find joy in this process of making memories with your baby and want to share that experience with those around you. All of these reactions are normal, but to someone who has no experience with or context for this process, it may seem odd or different than they expected. You do not need to apologize for your varying emotional responses to learning that your baby has a diagnosis and will die. Rather, this is your chance to set expectations, prepare your coworkers, and normalize this experience.

You may also want to share with your coworkers insight into why you have chosen pregnancy continuation. You may want to share the plans you have for experiencing life with your child during pregnancy or during the time you have with them after birth. What information you share is entirely up to you. There is never too much or too little information. There is no right or wrong response to what you are experiencing. There are no right or wrong emotions. This process will look exactly how it looks for you. This experience is unique to you, so share what you want to and keep private what you choose.

“People cannot understand fully what they have not experienced for themselves, so when you share information about your personal experience, it helps inform those around you, and it gives them a better understanding of how to support you.”

ESTABLISH BOUNDARIES

Now, that you have planned for sharing the news as well as insights into your emotional experience and processing, consider establishing boundaries, too.

Personal boundaries are the limits a person puts in place to ensure that they are treated well in a relationship. Boundaries serve as a set of guidelines to help each person know how to navigate the relationship as well as the response when those limits are pushed or tested. Boundaries are interpersonal because they offer guidelines for both the incoming and outgoing interactions between two people.

At work, your boundaries can be physical, mental, emotional, social, and/or spiritual. Their purpose is to prioritize your needs, protect your well-being, and establish a safe and supportive working environment. Your boundaries can be rigid or flexible. They can be subject to change or adjustment at each step of the process. Boundaries can be individual and dependent on the relationship in question.

Healthy boundaries in a work environment can look like:

Discernment about the information you share
Time limits placed on conversations about the diagnosis and experience
Guidelines and expectations regarding questions and communication about the diagnosis and pregnancy continuation
Asking for specific support from your employer and colleagues
Not being responsible for supporting the emotions of your colleagues
Loosely committing to social work events, with the freedom to cancel if needed
Saying no to social events, requests, or anything else that does not feel like self-care in this season
Guidelines around physical touch such as hugging, hands placed on your belly, or any other form of physical contact you are not comfortable with

The steps for establishing healthy boundaries are:

Consider the relationship and environment in question and what you need from it.
Consider the boundaries already in place for that relationship or environment and think through any necessary boundary adjustments.
Create healthy boundaries for each step of the carrying to term process.
Communicate your boundaries clearly, calmly, and sensitively with your human resources department, employer, and/or coworkers.

You have limited resources right now- physically, mentally, emotionally, socially, and spiritually- so you have the right to say no or express your needs and preferences without explanation or apology. You have the right to take care of yourself, and boundaries help you do just that.

PROVIDE RESOURCES TO HELP YOUR COLLEAGUES SUPPORT YOU WELL

At this point, you have crafted a plan for how, when and what information you will share with your colleagues. You have thought through what insights you want to share about your emotional response and processing, and you have considered what boundaries you need and how you will communicate them. The last thing for you to consider before sharing the news is what resources you want to provide to your colleagues to help them support you well.

Equipping your colleagues with resources helps them know what to do next, how to communicate with you, how to offer support, how to seek support for their own emotional needs, and it helps protect you from constantly educating or equipping your colleagues throughout this process.

Carrying To Term has done the work for you when it comes to supporting and equipping your employer and coworkers. When you are ready to provide resources to your colleagues, we recommend that you direct them to our website (carryingtoterm.org). There they will find:

A series of videos to help them understand what it means to receive a prenatal diagnosis and choose pregnancy continuation
Stories from parents who walked this path to help them understand the experiences you are facing, the grief you feel, and the beauty in your story
An entire section of our blog dedicated to encouraging, educating, and equipping them throughout the process of caring for carrying to term parents

On our blog, we have several posts that we recommend parents share with colleagues. These resources were written to help them understand the unique challenges, emotions, and experiences you are facing. We want your colleagues to feel confident in their abilities to empathize, communicate well, and provide the tangible support you need each step of the way. To equip your coworkers, we recommend sharing the following blogs:

In addition to these resources, your human resources department may provide other workplace specific resources about bereavement, supporting a coworker, or navigating hard situations in an office setting. Reach out to your human resources department and ask if there are any resources they could help you provide to your colleagues.

“Equipping your colleagues with resources helps them know what to do next, how to communicate with you, how to offer support, how to seek support for their own emotional needs, and it helps protect you from constantly educating or equipping your colleagues throughout this process.”

SAMPLE EMAIL TO COLLEAGUES

Now that you have worked through your preferences and needs, you are ready to share the news with your colleagues.

This email should establish boundaries, explain your needs, set expectations, and provide colleagues with the best information to support you. But remember: It’s entirely up to you what you want to share and what you want to keep private, who you want to inform, and when you want to send this message.

To help you compose your message, we prepared a sample email. Feel free to use it as a template or inspiration.

While you cannot guarantee your colleagues’ understanding or empathy, and you can’t predict how people will react or whether they will respond at all, advocating for yourself is essential for your mental well-being. By following these steps, you can equip your colleagues with the information they need to be supportive and help ensure your employer provides you with the environment and accommodations you need as you navigate your carrying to term journey.