For this deeply personal article, we express special gratitude to the parents who lost their child to CHD and were willing to share how they coped with the grief in the hopes of helping other parents who are facing the same extraordinary loss.

Even with the best care available, it is a sad reality that some forms of CHD do have a high chance of a long hospitalization and possibly death. The doctors can usually tell you when your child’s condition has a high risk of either severe complications or death.

Sometimes a child dies because the parents decide to terminate a pregnancy, or to stop treatment after birth if it becomes clear that death is inevitable. And sometimes, despite continuing aggressive treatment, a child dies.

If you are in the process of deciding whether to end a pregnancy or to remove treatment, or if you are trying to accept what doctors believe will be an inevitable death after extended care, you are in a time of extreme stress and grief.

Your brain will work to protect you and may cloud over the details of these days. While this is a natural reaction that helps you carry on in the short-term, it can be frustrating and upsetting if in the future you look back at this time and cannot clearly remember what happened. A lack of memories may lead you to have doubts or regrets about your child’s care or decisions you made.

Woman writing in journal

Preserving Your Memories and the Connection to Your Child

For your future peace of mind, you might want to keep a written document of what happened, what the doctors said, and what you were feeling. You can write in a daily journal or diary where you keep notes every day.

You may also wish to write a letter to your child that tells them the story of their life, including information and memories about your journey with your child. Later, when you are ready, you can read this letter to remind yourself of all the details of your child’s life – from the beginning to the end. These small details can help keep you connected with the memory of your deceased child and the love you will always have for them.

While the love we have for our children fills us with joy, our grief over their death is also an expression of love. Both joy and grief honor our love for our children. Our grief will never disappear, but with time it can change from an overwhelming force that blocks out joyful living and prevents us from functioning normally, to an intermittent deep sadness, and eventually become a functional part of us that we can live with and see as an expression of love for our children in our lives.

Finding Your Way Through Grief

People manage their grief differently. In families it’s important to allow every person to take their own path through the grieving process. One parent may wish to process their grief alone, while the other parent may want support for their grief.

  • Let yourself be angry

    It’s normal for parents to feel anger and grit when they lose a child. CHD isn’t fair. It’s not fair that your child or your family is forced to cope with CHD. Give yourself the grace and patience to be mad. You may eventually see ways that your child and their CHD changed others’ lives for the better. You’re only human if there are still times when you are upset.

  • Get some rest

    It is normal to be both mentally and physically exhausted by grief after the loss of a child. In the early stages, it is especially important to pay attention to your exhaustion and get rest.

  • Get some support

    Consider starting with the type of emotional support that takes the least effort. For example, participating in a support group may be easiest for you at first. Later on, you may seek individual support through a mental health professional when you are ready to discuss your feelings in more depth.

  • Connect with your care team

    Your NICU, PICU, or ICU may have some form of a parent grief group. Your hospital may have a parent mentoring program that can connect you with a parent who has had similar experiences. If you have a faith community, talk with your pastor or spiritual leader. They can guide you to the group or individual support that is available.

  • Talk with friends

    Talking to friends is very helpful for some parents, while others find that it can be isolating to talk with friends and family who have not had the same experience. You may find yourself comforted, or you may be annoyed by well-meaning friends who cannot understand how you feel.

  • Find moments of gratitude

    At a time when you are sad, lonely, and frustrated, it can be useful to start a daily practice of writing down 3-5 things you are grateful for. This idea may seem very trivial in the face of deep grief. But reminding yourself of what you remain grateful for can be a powerful healing practice in the setting of grief, and it’s an easy and simple task to do.

ONLINE RESOURCESWebsites for Grieving Parents

We encourage you to explore support resources for grieving parents. You won’t need this support forever, and the best form of support for you may change over time.

Through many of these resources you can connect with other parents who have had a similar experience, and you may be able to get dedicated support from someone who feels your pain.

Mended Hearts
A home for links to support group information and Facebook groups, as well as suggested books and reading.

Compassionate Friends
A national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents, and siblings. There are no religious affiliations or membership fees.

Bereaved Parents of the USA
A group that provides a space where grieving families can connect, share stories, and learn to rebuild their lives. The website includes information about support for siblings of those who have passed.

Stephen Ministry
A Christian-based organization that provides grief support from parent mentors who have your experience, and have gone through a training program.

Memory Jar
A resource that offers pages of ideas for planning memorial and funeral services to help parents, families, and friends memorialize their loved one.

MISS Foundation
A nonprofit international organization that provides immediate and ongoing support to grieving families.

Healing Heart
A resource for bereaved parents that is dedicated to providing grief support and services to parents who are suffering as the result of the loss of their child or children. They offer information on sibling grief, parent and grandparent grief, and infant loss.

Modern Loss 
A resource that includes writings from people who have experience with all kinds of loss. You can search for the type of loss you are experiencing (for example, pregnancy or child). It features very honest and clear discussions.

HelpGuide
The “Coping with Grief and Loss” area of this resource describes stages of grief and includes suggestions for managing and living through the grief.

National Hospice and Palliative Care Organization
This website includes helpful information about the grieving process and how to support loved ones who are grieving a loss.

The Solace Tree
Helping children and teens cope with the death of a loved one, the Solace Tree offers peer support groups for children, teens, and adults. Their support includes counseling and a children’s bereavement network.

The Tears Foundation
Offers financial assistance for burial or cremation.

PRINT RESOURCESBooks on Grief and Loss

Here are websites you can explore with lists of books for grieving parents and siblings.

CAMP RESOURCESGrief and Bereavement Camps

Camp Erin
Location: Multiple locations in the U.S.
Camp Erin is the largest national bereavement program for youth grieving the death of a significant person in their lives. Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.

Camp Kara
Location: Palo Alto, California
Camp Kara is a free bereavement camp for youth ages 6 – 17 who have experienced the death of a family member or friend. Children and teens come together for one weekend to participate in traditional fun camp activities and peer support focused grief activities. Campers are supported throughout the weekend by Kara’s highly trained volunteers and staff.

Sarah Vega Grove, Parent

Krista Reuther, Social Worker

Cynthia Schultz, Parent

Theresa Tacy, Physician

See the full list of contributors to the CHD Care Compass

Last Update: March 9, 2022