By: Kylee Bennett

Nearly 120,000 infants are born with congenital defects each year, and they don’t always go on to live happy lives. If you’ve received a difficult fetal syndrome diagnosis, you’re certainly not alone. During this challenging time, it can be easy to focus solely on your pregnancy and the anxieties surrounding it, but it’s important to take care of your mind as well as your body. The two work together more than you know, and a healthy mind is vital for having the healthiest pregnancy you possibly can.

Seek Information, But Not Too Much

Every pregnancy is accompanied by a myriad of questions. After the diagnosis of a fetal syndrome, those questions will grow even more in numbers. Make a list of your questions and concerns and revisit the diagnosis with your doctor at your next appointment when the initial shock has worn off. You can do your own research as well, but don’t go too far down the rabbit hole. Often times, bombarding yourself with tons of information will be overwhelming. Make sure the information you do expose yourself to is from a reputable source. Sometimes simply having answers to your questions can give you the confidence you need to take charge, versus feeling helpless.

To ensure that you have all of your concerns and questions addressed, keep a small notebook or a note app on your phone at all times. That way, you can jot down any thoughts, questions, concerns, or anything else you want to look into or discuss with your care provider. When you have conversations with your doctor or specialists, you can also take notes so you have a reference of their responses. Alternatively, you can use a voice recording app so you have the information to refer back to when needed.

Communicate Your Needs

Once you’ve talked through the diagnosis, it may take some time to process; that’s perfectly normal. It’s also normal for people to cope in different ways. Some women cope best with the support and closeness of their partner and other loved ones, for example, while others may need more time alone. Similarly, some may need to slow down in order to take in this information, and still others may do best when they keep busy with working. Whatever your needs may be, they’re important. As such, you should communicate those needs to others so they know how to best support you and respect your choices. In times of uncertainty, leaning on those closest to you can make a world of difference. Surrender some of the weight; you do not have to carry it all on your own.

With the support of family and friends in mind, you are also in control of when and to whom you choose to disclose the diagnosis. If/when you do choose to share information, start with those with whom you feel most comfortable and can count on to be compassionate and understanding. By making clear statements about the diagnosis, your feelings, and decisions for moving forward, you can help guide the conversation to keep it as comfortable as possible.

Further Explore the Coping Process 

Even after time has passed and you’ve better processed the diagnosis and journey you’re on, feelings don’t just go away. How you cope initially and how you continue to do so aren’t typically the same. In addition to having some of the same feelings you did with the initial diagnosis, it is likely you’ll experience a range of other emotions throughout the pregnancy. It’s important to take the time to work through your feelings and emotions; never ignore them. Coping doesn’t just come in one form. Journaling, joining live or virtual support groups, creating art, exercising, and anything else that helps is encouraged. Try out several things to see what works best for you. Seeing and talking with another counselor or therapist can also be beneficial for your mental well-being.

Like the coping process, therapists come in all kinds; it’s important to find one that works for you. This is, after all, a very personal matter, and you should feel comfortable with the person with whom you’re sharing such personal details. Sometimes just having a person to talk to who is less involved with the situation directly, thus more objective, can be very therapeutic. As mentioned, support groups are another option, especially if you’re feeling alone in your situation. In addition to finding support with others who may be facing a similar circumstance, you should also do regular self check-ins on a day-to-day basis to help you keep in touch with your feelings, especially as they change.

After receiving a fetal syndrome diagnosis, every day may bring a different array of emotions. It’s important to allow yourself to feel them all, and seek support in whatever means provides you with what you need. Also remember that your partner is likely processing this, too, and while you may cope differently, you can learn to rely on each other for support in ways that are otherwise hard to come by. Above all, be kind to yourself and your partner.

More resources for difficult pregnancies:



Photo by Sergiu Vălenaș on Unsplash