For Parents

Loss of a Child

Losing a loved one to CHD is life changing.

The bond between a parent and child often begins before the child is even born. Whether your child was a baby, toddler, or adolescent when they died, you must work through the same emotions. How to deal with it all is a big question.

Losing a child affects couples and may alter your feelings toward each other. After the death of a child, parents often expect their reactions to be similar because they are suffering the same loss. Because each person processes the loss differently, you may find it difficult to communicate. It is important to set aside time to be alone together – to talk, cry, or simply hold each other. Finding a way to support each other, and respecting your needs as individuals, will help you through this difficult time as a couple. Seeking counseling through health care providers, family and friends, or church may also help.


You will go through the grief process. Most likely you are experiencing a mix of emotions, including shock or denial, depression, anger, and guilt. It is extremely common to be preoccupied with the circumstances of your child’s death, or you may have dreams or nightmares about seeing your child. When your child has died, you may feel guilt for simply living. Or perhaps you feel guilty because you feel you should have prevented your child’s death.

Grieving involves many different emotions, actions, and expressions, all of which help you come to terms with the loss of a loved one. Grieving includes feelings like anger, sadness, relief, disbelief, and confusion.


Coping with your loss is possible, even if it feels impossible on some days. It may feel more like a roller coaster, with ups and downs that make it hard to see that any progress is being made in dealing with your loss. You may feel better for a while, only to become sad again. The memories you have will remind you of what was most special about the time you shared with your loved one.

Some ways to cope with loss include:

  • Recognizing and communicating how you feel.
  • Joining a support group.
  • Understanding your own coping process.
  • Seeking group or individual grief counseling.
  • Taking care of your own health with proper nutrition, exercise, and enjoyable activities.

It takes time to mentally and physically adjust to the changes that come with your loss. It is very important to stay grounded and hopeful for what the future holds for you, the memories of your loved one, and the family and friends of your child. If you find that you are having many sad days in which you are not able to leave the house, or if you find the death sparked or increased an interest in alcohol, drug use, or self-harm, speak with a trusted adult and/or counselor to get extra help. Healthy grieving allows us to let a loved one go and keep on living in a healthy way.


Talking to Your Family

The loss of a sibling, family member, or loved one from congenital heart disease is painful and sometimes scary. Both patients and families reach a time when they say goodbye at the hospital, at home, or at a funeral. When a young person’s life ends before their peers, the death brings up thoughts and feelings which can be easier to understand with help from people who have experienced similar losses and want to listen.

Your other children will experience the loss of their sibling in different ways depending on their age, maturity, and ability to understand. Even small children sense the profound grief of parents and other family members. Answering questions, talking about the death, and understanding how your children grieve is important to their grief process.


The Future

Even when you think that you are learning to live with the loss of your child, dates of special family-oriented events – birthdays, holidays, death dates, Mother’s Day, Father’s Day, school beginnings and endings – may cause you additional pain and grief. It is a normal response to experience the recurrence of grief-related feelings with the loss of a child. Such a loss is ongoing and significant. A trigger event might be something completely unexpected, such as hearing a child’s laughter. Getting support to navigate these feelings is very important.

The death of a child is a very difficult subject for most people. Friends and family often don’t know what to say. Looking to those who have had the same experience may be useful and comforting.

Helpful Resources

Finding Support

  • Advocacy groups in which parents have lost a child are a good source of support (See Helpful Resources). People there will have experience and can show you how to manage day-to-day life while grieving.
  • Family, friends and co-workers may want to support you in physical and emotional ways. Drawing support from others is important to the healing process.
  • Your doctors and nurses can often direct you to services, support groups and programs that may be beneficial to you and your family.

Online Support Groups

For Siblings

The following resources may be a good place to start in understanding the ways in which siblings understand death and experience grief:

For Grandparents

The Alliance of Grandparents, a Support in Tragedy (AGAST) is a support group dedicated to helping grandparents with the stress and grief after losing a grandchild.


Coping with Chronic Illness