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Whether it’s a parent’s first or fourth child, pregnancy can be filled with equal parts excitement and anxiety. Expectant parents can opt for their doctors to perform a variety of prenatal tests to screen for genetic abnormalities or birth defects while the baby is still developing. If these screening tests come back at increased risk, parents are referred to genetic counselors to learn more about their diagnostic testing options. A diagnostic test can be done to confirm if your baby does or does not have a condition. Depending on individual circumstances, some families pursue diagnostic testing during a pregnancy while others elect to pursue testing after the baby is born.
Once a diagnosis is made, families can meet with specialists to learn more about both short and long term care for their baby.
This excerpted post was originally published on the Seattle Children’s On the Pulse blog.
Seattle Children’s Fetal Diagnosis Program team, part of Seattle Children's Fetal Care and Treatment Center in collaboration with UW Medicine, sees families every day who have received unexpected prenatal test results. These families come to Seattle Children’s with questions and may feel anxious about next steps. We’re here to help give parents the information they need to prepare for the future.
On The Pulse reached out to Kiana Siefkas, a licensed and certified genetic counselor in Seattle Children’s Fetal Care and Treatment Center, to offer some advice for families to help cope with an unexpected prenatal test result.
Take a deep breath and figure out what support you need most when receiving the news
Many people who choose to have a screening test do so for reassurance and have not considered how they would react to receiving an unexpected result. Some people need to call a supportive and compassionate partner, friend or family member. Others will want to leave work, while some may need work as a distraction. Pause for a minute to figure out what you need most and then let people know how they can help you.
Revisit the information from your doctor
Your Obstetrician (OB) may ask you to come in for a visit to review the results, followed by setting up an appointment for you to meet with a genetic counselor. Others will send you directly to the genetic counselor. Either plan is fine and is a matter of provider preference. Make sure you take the time to review the information they provided for clarification.
Obtain information from reliable sources if you feel the need to do more research
Your first instinct may be to look online for information and resources. It’s not a requirement to do your own research, but you can if you want to. The internet has great resources, but it also has many misinformed resources. Do your best to stick with websites ending in .edu or .org. Websites from hospitals and national or international reputable organizations are more likely to have accurate information.
Support groups can be helpful sources of information. It’s important to be aware that you will be introduced to individual experiences that may differ from yours within those support groups. Similar experiences can also feel differently to different people.
Keep in mind some medical terms are very specific while others are very broad and cover a wide scope of conditions and outcomes. It may be difficult to understand your circumstances based on a high-level internet search and further evaluations may be necessary, as well as visits with specialists to better determine the likely outcomes.
Write down your questions and concerns
Carry around a notebook or keep notes in an application on your smartphone and write down questions as they come to you so you don’t have to remember them later. At your visit with your genetic counselor, you will have the opportunity to ask your questions and look back at your notes to make sure everything is answered. You can also call again or send a message later if other questions or concerns arise — we‘re available to speak with our patients and address their concerns.
Find ways to cope and process your feelings
The emotions you’re feeling don’t just go away. Taking time to care for yourself and working through your emotions is essential. Journaling, exercising, creating art and other coping mechanisms are encouraged. Try out a few different things until you find something that works for you. Seeking a supportive, open-minded therapist for you or you and your partner can help with processing your emotions. Perinatal, pregnancy or prenatal counselor are search terms you can use to find a therapist specializing in specific issues that arise in pregnancy that you may be facing.
Decision Making Support
Decision making can be difficult and you may face several decision junctures. Your genetic counselor and care team can talk you through options and ways of thinking through your choices, benefits and limitations, and help you with resources and information. Reflecting on ways you or you and your partner have made difficult decisions in the past can lend you strategies and information for knowing what you need and how you process information for decisions. For additional guidance, a perinatal therapist has strategies for working through decisions. Decisions are personal. Discuss which factors are important to you with your care team as you discuss your situation and make decisions. Care teams have seen families faced with similar circumstances make a variety of decisions and your team is here to support you.
Decide what you want to tell friends and family
How and what you decide to share about your prenatal testing and pregnancy is completely up to you. If you elect to do diagnostic testing after your baby is born, you may choose to not share information about prenatal testing with others. You may simply offer a direct statement like, “A test raised a concern in our pregnancy and after birth we will do diagnostic testing to learn more.” If you choose to share, I encourage you to start with compassionate, supportive friends and family members. Preparing clear statements about your baby, your decision and how you are feeling may make initial conversations easier. You may receive comments that are hurtful. Be prepared and be open with your friends about how their comments make you feel. Contrarily, you might receive more support and care than you expect.
Do regular self check-ins
If your baby has been diagnosed or you’re awaiting the birth of baby to do diagnostic testing, going through the rest of the pregnancy and birth may bring a range of emotions. It is important, day-by-day, to check-in on how you are feeling. Some days you may feel excited – you are having a baby! Other days you may feel sad, angry, uncertain, worried or tired. All of these emotions are normal and part of the process. Don’t be afraid to let friends and family know if you want to continue plans for baby showers and other celebrations.
Some families will have the experience of a wanted pregnancy ending. This can also bring a range of emotions that are normal. Certain days, like your due date and anniversaries of events, can be especially difficult, even months or years after the loss. Be kind to yourself and seek support.
Keep in mind your partner may be working through things in a different way than you. Friends and family want to support you but may not know how best to do so. Think about giving them a “weather report” when you meet. Tell them if you want to talk about it or if you want to talk about something else.
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