Receiving a serious or life-limiting diagnosis for your baby can feel overwhelming. Many parents describe feeling shocked, confused, numb, or unable to process all the information they receive during appointments.
You do not need to understand everything right away. It is okay to ask questions multiple times, request written information, or seek additional support as you learn more about your baby's condition.
Every diagnosis is unique, and there may be uncertainty about what your baby will experience during pregnancy or after birth. Understanding what is known, what remains uncertain, and what options are available can help you make informed decisions, prepare for the days ahead, and consider what matters most to you and your family.
Questions to Ask Your Care Team
You may have many questions about your baby's diagnosis, prognosis, and what to expect. It can be helpful to write down your questions before appointments, bring someone you trust, and ask your healthcare team to explain unfamiliar medical terms.
You do not need to ask everything at once. The following questions may help guide conversations with your care team.
Understanding the Diagnosis
What is my baby's diagnosis, and what does it mean?
How certain is the diagnosis? Are additional tests or imaging recommended?
What do we know about how this condition may affect my baby?
What is still unknown or difficult to predict?
Are there specialists who can help us better understand the diagnosis?
Understanding the Prognosis
What are the possible outcomes during pregnancy, at birth, and after birth?
Is there a possibility that my baby could die before birth or shortly afterward?
If my baby survives, what medical needs or challenges might they experience?
How might my baby's condition change as the pregnancy progresses?
Understanding Care and Treatment Options
Are there treatments or interventions available during pregnancy or after birth?
What are the potential benefits, risks, and limitations of these treatments?
What would comfort-focused care look like for my baby?
Can we meet with a perinatal palliative care team to discuss our options?
How might different care decisions affect my baby's comfort and quality of life?
Planning for Pregnancy and Birth
Will this diagnosis change how my pregnancy is monitored?
Are there additional risks to my own health?
How might the diagnosis affect decisions about the timing, location, or method of birth?
What should we prepare for if our baby's condition changes unexpectedly?
Who can help us develop a birth plan that reflects our family's wishes?
Finding Support
Can we speak with a social worker, counselor, or other professional experienced in supporting families facing serious prenatal diagnoses?
Are there other families or support organizations we can connect with?
Who should we contact if we have questions or concerns between appointments?
Seeking Additional Information
If you feel uncertain, it is okay to:
Request a second opinion
Ask for additional appointments to discuss the diagnosis
Meet with a genetic counselor, specialist, or perinatal palliative care team
Bring a support person to appointments
Take notes or ask permission to record information for later review
Finding Your Own Way Forward
You are not expected to become a medical expert overnight. Many parents leave appointments feeling overwhelmed, with unanswered questions or realizing later that they forgot to ask something. It is okay to contact your healthcare team, ask for clarification, and revisit conversations as new questions arise.
Some families find comfort in learning as much as possible about the diagnosis, while others prefer to take in information one step at a time. There is no single right approach. While understanding your baby's diagnosis can help you prepare for the days ahead, your baby's diagnosis does not define who they are.
As you learn more about your baby's condition, remember to make space for moments of connection, memory-making, and simply being together as a family.