Learning that your child has congenital heart disease is a traumatic event that can cause emotional, physical, and spiritual reactions or distress.

It is normal to have a variety of reactions and every parent is different. While some parents have many intense feelings immediately, others have few emotions at all. You may find that your feelings frequently change, or you may notice little change in your normal feelings.

It’s important to be kind and patient with yourself as you experience strong feelings or reactions after the sudden and unexpected news of a CHD diagnosis.

Give yourself time to process your reactions. When you are ready, your care team and others can help. There are many resources and tools available to support you through the uncertainty and challenges ahead.

What Can Happen After a CHD Diagnosis?

“Brain Fog”

Your brain works hard to manage the stress and emotions. When your brain is on overload, you may have trouble processing information and feel as if you are in a fog. This is a very normal and even expected reaction. It may be difficult to focus on anything else but the news you have just received, and you may not be able to remember everything that the care team told you.

A Flood or Loss of Emotions

Many parents experience a lot of emotions, including guilt and sadness. Emotions may fill you with fear for your child, fear about your ability to manage their needs, or anger at the loss of the joy you felt before the diagnosis. It is also very normal for parents to have few emotions, and instead feel numb and shocked.

A Shift in Perspective

One of the most common reactions is grief over the loss of the healthy child you have been imagining. We all move through life with an idea of who we are and how the world works. Sometimes a big change or loss – like learning that your child has a serious health problem – can cause a shift in identity. This shift may change the way you see yourself and the world.

Changes in Thoughts and Behavior

Grief can come on strong, and it can cause surprising reactions to unexpected triggers. You may think and act very differently when overwhelmed by grief. Some parents experience physical reactions, spiritual reactions, and/or behavior changes that may at times disrupt their regular routines or other parts of daily life.

Take a Closer Look

Grief/feelings of loss

Numbness or shock


Difficulty concentrating

Continuously thinking about the diagnosis

Racing thoughts

Difficulty with decision making

Low self-esteem



Feeling on display, vulnerable, or exposed

Feeling different than others

Experiencing self-destructive thoughts

Changes in your sleep (sleeping too much/too little)

Weight and appetite changes

Muscle tension


Headaches/stomach aches

Pounding heart

Feeling weak or feeling energized (strong/invincible)

Being easily shaken by certain sights, sounds, noises (especially ones that remind you of the diagnosis)

Getting sick more frequently

Deep sighing

Feeling lost and empty

Feeling abandoned or punished

Questioning a reason to go on living

Feeling like you don’t belong

Feeling angry

Questioning your religious beliefs

Feeling spiritually connected to the fetus

Feeling more spiritually connected

Needing to receive forgiveness

Finding hope in prayer/spiritual beliefs

Finding purpose in life

Trying to stay constantly active



Changes in work performance

Being preoccupied and forgetful

Being more clumsy

Crying a lot, or more easily

Blaming others

Not caring about things

Wanting to spend more time alone

Dropping out of social activities

Pulling away from others who attempt to comfort you

Wanting more attention and affection

Seeking approval and reassurance from others

Being aggressive, having more frequent arguments

Showing more creative expression through music, writing, and art

How to Find the Path Forward

There are no rules for dealing with sadness and grief. Every parent processes the diagnosis and their reactions in their own way and on their own timeframe.

Here are some important steps to take as you discover your own path forward.

  • 1. Feel your loss

    Before you can see your way through the grief and into your new reality, it is important to let yourself feel your loss. You may need to “sit with your loss,” where you take time to consider and accept how your reality and the future you imagined have changed. This can help you make peace with grief, confusion, and other feelings. Over time you can learn to trust that the path forward will reveal itself, even if it is very unsure today.

  • 2. Get more information

    Seeking and finding information and resources about CHD is a common and effective way to cope with the stress of uncertainty. It’s essential for you to have accurate, timely information about your child’s diagnosis. This will help you better understand the heart condition and the impact it may have on your child’s life. Information and counseling from medical professionals can help you feel more in control and better equipped to make decisions about your child’s care.

  • 3. Talk with others

    Your care team can help acknowledge the trauma and emotional response associated with the diagnosis. They can provide emotional support and suggest different ways to help you through this process. This may include individual therapy and support groups. It may really help you to connect with other CHD parents or caregivers who have had similar experiences.

  • 4. Try different types of support

    There is no one approach to support that works for everyone, and different types of support may work better for you at different times. Experiment with your options and find out what helps you now. In addition to talking with others, you can explore relaxation techniques and activities you enjoy. Parents often try many approaches before they find a combination of support that works for them.

Reactions to a CHD Diagnosis

I would encourage people to don’t jump to conclusions until you’ve actually spoken to experts about it.

Austin, CHD Parent

PARENT TIPYou Are Not Alone, But You Might Feel That Way

You, your partner, family, and friends may all have different reactions to the CHD diagnosis. For example, one person might feel overcome with sadness, while another is angry or resentful. Sometimes these differences can make it hard for you to feel connected with others, and you may find yourself questioning your relationships.

Intense negative feelings may cause you and your partner to feel lonely and grow apart. Family and friends may have good intentions, but they may not know how to support you or what to do or say. When loved ones try to be helpful by finding meaning in difficult situations, it may be comforting or it may feel dismissive of the reality you are facing. Loneliness can be a painful addition to the fear you are feeling for your child, so try and find ways to connect with your partner and with other people who can support you.


Yes. It’s important to recognize that you are under a lot of stress. Some parents can be very hard on themselves about their reactions to a diagnosis, or may feel embarrassed if they cannot remember what they have heard. It is very normal if you feel unable to control your emotions or find that your usual strategies for managing tough times are not working as well.

Some parents do not feel a lot of emotions after receiving a CHD diagnosis, and that’s okay. You may have a delayed reaction and experience changes sometime in the future, or you may never experience any noticeable changes in how you feel or act. Everyone reacts differently, and for some people it is easier to accept the situation and move forward.

Your care team works with parents like you every day. They understand that a CHD diagnosis is life-changing news that can be overwhelming. Your care team should try to deliver information with empathy and kindness. It’s okay to ask them to repeat information or tell them that you need to pause for a moment.

When you’re ready, the care team can provide options to help you find a type of support that works for you, so that you can feel strong and empowered to advocate for your child’s care.

While the intensity of these emotions may soften with time, there may be times in the future when they come back strongly. For example, you may be surprised to feel stressed when you return to the hospital for a routine clinic visit with your child. Be patient with and kind to yourself, because this is your body and mind telling you it is afraid – even if your brain knows better.

How you react to a new diagnosis of CHD relates to how you process and react to stress. But it does not tell you if you are a good or bad parent. Remember that as a parent you are called to love and take care of your child. Your reactions – or lack of reactions – are a reflection of how you deal with fears for your child and your ability to protect them from harm. There is no right or wrong way to react. Your reactions are not a statement about whether you are a good or bad parent.