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 positive, parents are referred to genetics counselors like me to learn more about their diagnostic testing options. A diagnostic test can be done to confirm if your baby does or does not have the 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.
Seattle Children’s Prenatal Diagnosis and Treatment team sees families every day who recently received unexpected prenatal test results. These families come to us 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.
Here I share 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 like to receive their results. Some women need to call a supportive and compassionate partner, friend or family member. Other women 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
Some doctors will ask that you come in for a visit to review the results and then set 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 doctor preference. Just make sure you take the time to review the information they provided for clarification.
Find 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. I encourage you to stick to websites that end in .edu or .org. Websites from hospitals and national reputable organizations will likely have the most helpful and accurate information.
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 a genetics 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 later if other questions or concerns arise — we‘re always available to speak with our patients.
Find ways to cope and process your feelings
The emotions you’re feeling don’t just go away. Taking time to take care for yourself now and work through your emotions is essential. Journaling, creating memories, exercise, art and other coping mechanisms are encouraged. Try out a few different things until you find something that works for 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 elected to do diagnostic testing after your baby is born, you may choose to not share with others or to share a simple 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 would encourage you to start with compassionate, supportive friends and family members. Preparing clear statements about your baby, your decision and perhaps how you are feeling may make initial conversations easier. You may receive comments that are hurtful. Be prepared for that and be open with your friends about how their comments are making you feel. You also might receive more support and care than you expected.
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. I think it’s important, day-by-day, to see 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 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 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.
Kiana Siefkas is a licensed and certified genetics counselor in Seattle Children’s Fetal Care and Treatment Center. Learn more about the program in our recent blog, “Starting Out Strong.”
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