Receiving a Fetal Diagnosis + A New Diagnosis Worksheet

You may have just been given the life altering news of a fetal diagnosis. Or maybe you received the diagnosis weeks ago, and you feel like your days now consist of coordinating, attending, and processing medical appointments.

It’s possible that a concern was identified early on in your pregnancy and you endured weeks of diagnostic testing with an ever-growing list of specialists and scenarios before finally hearing a diagnosis. Or maybe you experienced a smooth and relatively worry-free pregnancy until an anomaly was identified during a routine ultrasound and you now find yourself just weeks from delivery with a very different looking future for you and your baby. 

No matter the scenario, it’s likely that a fetal diagnosis was not part of your original hopes or plans for this pregnancy. 

Since receiving the diagnosis, you’ve had to absorb new and complex medical information in a short amount of time under extreme stress. You may also be faced with the painful reality of having to make difficult decisions about your pregnancy within a limited time frame that is determined not by your needs, but by medical and legal guidelines. 

Although you may feel like it, you’re not alone.

Now is an important time for you and your partner, spouse, or support person to turn toward each other and begin to prepare for the road ahead, no matter the outlook. This is a vulnerable time for both of you, but you’re going to get through it. Whether or not you know it now, you have inner resources and strengths that will help you cope and communicate throughout this process. Building the right support team to help you identify and use those resources and strengths is key. 

An important first step is to assess what you and your partner know and understand about the diagnosis and immediate plan of care.

I’ve created the worksheet below to help you do this. Right now you may be experiencing an overload of emotions and sensations, you may feel completely frozen, or maybe you’re clearheaded and focused. Any way that you feel is okay. Putting information onto paper will help make space for your feelings. It may also help you gain a sense of some control. You and your partner have an important voice in this process and this worksheet is meant to help you use it.

As you complete the worksheet:  

• Be kind and forgiving of yourself.
  You may be unable to recall specific information that you know was discussed at your appointment. Remember, you were given complex and possibly upsetting information under stress. There’s a whole body of research dedicated to the impact that stress has on learning and memory. It’s expected that your ability to process and retain information may have been limited by the circumstances in which you received it.

• Find a comfortable and safe space to complete the worksheet.
  You may experience unwanted physical and emotional sensations as you try to recall the events of your appointment.

• Take a break from filling out the worksheet if you need it. The objective of this worksheet is to help you.
  If you don’t feel like it’s helping, then right now it’s not for you.

• Focus only on what you learned in the medical appointment when you received the diagnosis.
  Don’t include information you read or heard before or after the appointment, especially any information you found online.

• Write down what the medical provider communicated directly to you and your partner about your specific diagnosis and situation.
  Don’t include information or anecdotes from a family member, friend, or acquaintance, even if their intentions were well meaning.

• This worksheet is not meant to take the place of or serve as medical care or advice. It’s a tool to help you articulate and assess your understanding of the information you received. Hopefully it will also serve as a tool to help you communicate with your medical team.

• As you write, other questions or thoughts may surface.
  That’s great. It means that as a processing tool, this worksheet is working. Use the back of the paper or a separate notebook to record whatever doesn’t fit on the worksheet. Although every section has an intention behind it, if it doesn’t feel applicable to you that’s okay, skip it.

What next?

What does your ideal support team look like?

The medical team is responsible for the care of you and your pregnancy. Who are some of the positive people in your support system outside of the medical team and what roles do they play in your life?

If you don’t already have a therapist, consider reaching out to a mental health provider who specializes in perinatal mental health and high-risk pregnancies to help you prepare for and process your feelings and experiences. I’m passionate about working with individuals and couples during this sensitive time.

Engage in self care.

There’s a section on the worksheet for you to choose three coping strategies. Pick ones that are both meaningful to you and that are simple enough that you’ll actually do them. Asking for help from people who love and care about you is also a form of self care.

This worksheet was designed to be completed right after you receive a fetal diagnosis.

You will have a lot to learn, process, and plan for in the days, weeks, and months ahead. Finding a system for managing information that works for you will be important. Look for future blog posts or stay up to date with my newsletter for more on this topic.