A prenatal diagnosis means your baby’s congenital heart disease (CHD) was found during pregnancy. CHD is a heart condition a baby is born with.
Learning this news can bring many emotions. Some of these may include feelings of shock, fear, sadness, anger, guilt, confusion, hope, or many feelings at once. These emotions may change day to day. There is no “right” way to feel.
Support and resources are available to help you prepare for your baby’s arrival.
Common Experiences During Pregnancy #
Every family’s journey is different. However, many parents of a child with CHD share similar experiences.
How might I feel after learning my baby has congenital heart disease? #
You may feel many emotions, and these may change day to day.
Some parents feel closely connected to their baby after a prenatal diagnosis. Others may experience:
- Anxiety (constant worry or fear)
- Depressive symptoms (feeling very sad, having low energy, or losing interest in things they usually enjoy)
- Distress (feeling overwhelmed or emotionally strained)
Both mothers and fathers can experience emotional stress during pregnancy and after birth. Parents may cope in different ways.
Families whose baby’s heart condition is diagnosed after birth often describe feeling sudden shock and may need to make decisions quickly.
Many families who receive a prenatal diagnosis often describe living with uncertainty for many months.
What kinds of questions might I have during pregnancy? #
Uncertainty is common and can be one of the hardest parts of this experience.
Many parents find themselves wondering about what life will look like after their baby is born. You may have questions about:
- Your baby’s overall outlook (called a prognosis)
- Possible surgeries or procedures
- Hospital stays and schedules
- Bonding with your baby
- Effects on siblings
- Changes in family roles and responsibilities
- Healthcare costs
- What to share with family and friends
How might this affect our family? #
A prenatal diagnosis can affect the whole family.
You may notice changes in:
- Daily routines
- Family responsibilities
- Support from extended family
- The emotional needs of siblings
- Your relationship with your partner, if applicable
Open communication can help. Talking together with your family members about each other’s needs and what feels manageable can make it easier to navigate changes together.
How You Can Support Yourself and Your Baby #
It is common for parents to experience emotional stress. If you are struggling or feeling overwhelmed, support is available.
Many parents feel they need to be strong or do everything themselves. Remember that accepting help is part of caring for yourself and your baby. When people offer support, it is okay to say yes. Small acts of kindness from others, such as meals, childcare, rides, or simply someone to listen, can make a big difference. You do not have to do this alone.
It can help to focus on what you can control.
You cannot control the diagnosis.
You can:
- Care for your physical and emotional health
- Decide who is part of your support system
- Choose what information you share with others
- Gather information and ask questions
Support your emotional health #
Ask whether your care team includes a psychosocial provider. These professionals support emotional well-being and mental health. This may include a social worker, psychologist, therapist, or counselor.
Some families find it helpful to meet with a palliative care team. This team focuses on quality of life and provides support for patients and their families during serious illness
For some families, faith or spiritual practices provide comfort, hope, and meaning during times of uncertainty.
Maintain healthy routines #
Taking care of yourself is part of caring for your baby.
Try to:
- Follow your healthcare teams recommendations for activity
- Rest when you can
- Eat regular meals
- Take breaks from medical information when needed
- Ask for help with daily tasks
Supporting your baby’s development during pregnancy #
One of the most important things you can do during pregnancy is care for your own well-being. Research shows taking care of yourself can help protect your baby’s brain development.
Many safe approaches may help reduce stress and promote well-being, including:
- Mindfulness activities such as breathing exercises or meditation
- Gentle physical activity, such as walking or prenatal yoga
- Talking to a counselor or therapists
- Spending time with supportive family members or friends
- Prioritizing sleep and rest
- Taking time to do things you enjoy, such as reading or spending time outdoors
- Taking breaks from stressful information, including medical information or social media
Well-being looks different for everyone.
Build your support system #
Think about who can support you during pregnancy and after your baby is born.
Support may include:
- Family members or friends who can attend appointments with you
- People who can help with meals, childcare or household tasks
- Support groups for families affected by CHD
- Spiritual or faith-based communities
There are many online communities and educational resources for families affected by CHD. Ask your medical team which resources they recommend for your child’s specific diagnosis or visit our resource page.
Is it ok to celebrate my prenancy? #
You may wonder how to celebrate your pregnancy after receiving a diagnosis.
There is no single right approach.
Some families choose to celebrate milestones as they always planned. Others prefer smaller or more private celebrations.
Choose what feels right for you and your family.
You are allowed to celebrate your pregnancy.
Can I start bonding with my baby before birth? #
You can begin building a connection with your baby during pregnancy.
Some families enjoy:
- Talking to their baby
- Singing or reading aloud
- Playing gentle music
Remember, your baby can hear and recognize your voice, and it can provide comfort to them while they are in the hospital.
If you have other children, you may wish to involve them in preparing for the baby’s arrival. Some siblings enjoy creating artwork, making signs, or choosing family photos to display in the baby’s hospital room.
Planning for Your Baby’s Arrival #
Stay connected with your medical team #
Keep regular pregnancy and cardiology appointments. These appointments may be more frequent than you originally planned.
Ask questions about:
- Your baby’s heart condition
- The care plan after birth
- Available support services
- Parent mentors
- Social work or psychology services
Let your care team know how you prefer to receive information and if you are having difficulty coping.
Ask your care team what to expect after delivery #
Topics may include:
- Where will I deliver my baby
- Who will be present in the delivery room
- Whether you will be able to hold your baby after birth
- When your baby may need to move from the delivery room to an intensive care unit or another hospital
- Hospital visitation policies
- Housing options near the hospital
- Childcare planning for siblings
- Transportation needs
- Breastfeeding support and lactation services
- Available family support services during hospitalization, such as parking and meals
Who can help you prepare? #
Social Work #
A hospital social worker helps families find resources, navigate insurance and financial concerns, connect with community services, and cope with the emotional and practical challenges of caring for a child with CHD.
Child Life services for siblings #
A Child Life Specialist helps children understand medical experiences in age-appropriate ways and supports siblings as they prepare for changes related to their brother’s or sister’s hospitalization.
Gather information #
It is ok to ask for the same information more than once. This is a lot to process.
You may find it helpful to:
- Request written information or diagrams
- Take notes during appointments
- Bring a support person with you
- Ask for access to you and your baby’s electronic medical records (e.g. “MyChart” access)
If available, ask your medical team about:
- Tours of the hospital units where your baby may receive care
- Social work and other support services for families
Gather information #
It is ok to ask for the same information more than once. This is a lot to process.
You may find it helpful to:
- Request written information or diagrams
- Take notes during appointments
- Bring a support person with you
- Ask for access to you and your baby’s electronic medical records (e.g. “MyChart” access)
If available, ask your medical team about:
- Tours of the hospital units where your baby may receive care
- Social work and other support services for families
Looking Ahead: Neurodevelopment #
Neurodevelopment refers to how a child’s brain grows and develops. This includes learning, movement, language, behavior, and emotional skills.
Children with CHD can have different neurodevelopmental outcomes or developmental paths. Some children do very well. Others benefit from extra support along the way.
During pregnancy, ask your cardiac team about:
- Programs that follow your baby’s development over time, such as Cardiac Neurodevelopment Programs.
- Opportunities for skin-to-skin care, holding, and ways to interact with your child while in the hospital, including family involvement after birth.
- Early Intervention (EI) Services available in your area.
Early Intervention Services #
Early Intervention services provide developmental support for infants and toddlers who have developmental delays or are at risk for delays.
A Final Reminder #
This journey may not look the way you first imagined.
It is ok to grieve changes while also holding hope.
You are not alone.
Support is available.
You are the most important person in your baby’s life.
Your love, presence, and care matter deeply and play an important role in your baby’s growth and development.