Losing a loved one to congenital heart disease is life-altering. However, you are not alone. Pediatric Congenital Heart Association warmly welcomes bereaved families in all aspects of our programming and understands that bereavement support is crucial. We hope you will find value in the resources shared below and know we hold your family and your loved one in our hearts.
Many families report they are so overcome with sadness after losing a loved one, that simple decisions are nearly impossible. The following resources are gently provided in the hope they may ease some of the decision-making burden. Families should also inquire with their medical facility for assistance from social workers, clergy or other appropriate staff members.
A complete funeral planning guide, by Funeral Wise
Writing a Child's Obituary
Advice and sample writings, by Partnership for Parents
Now I Lay Me Down To Sleep
Providing the gift of remembrance portraits to parents experiencing the death of a baby
Bereavement Leave from Work
A comprehensive resource for taking bereavement leave from work, by Employment Law Handbook
Understanding & Managing Grief
Understanding how grief works may help on your journey of managing it. Most importantly, you are not alone.
A video on understanding grief with David Kessler
A list of grief-specific articles by Hospice Foundation of America
How Children Grieve
A resource from American Academy of Pediatrics on how children grieve
Managing Grief in College
Advice and resources for grieving college students
Managing Grief for Young Adults
Actively Moving Forward® is a national network of young adults, ages 18-25, supporting young adults who are grieving a death or their person’s diagnosis of a terminal illness
Fathers Grieve Too
Information and advice for bereaved fathers, by Return to Zero: H.O.P.E.
Connection & Support
When you are ready, connecting with other families who are bereaved can be an empowering step in your grief journey. Finding professional support is also important to consider.
A Facebook group by PCHA to connect bereaved families affected by congenital heart disease
Bereavement Camps, Retreats and Recreation
Search Needy Meds' database of bereavement camps, retreats, and recreational programs
Helping grieving parents and families rebuild their lives following the death of a child at any age
National Alliance for Grieving Children
The National Alliance for Grieving Children lists grief support service providers who serve children, teens and their families
The Compassionate Friends
Supporting the family after a loved one dies
Grief Recovery Method
Search for a program or individual specialist near you
Honoring Your Loved One
Your loved one will always hold a place in your life and holidays and important family dates may be very difficult without them. The resources below offer some opportunities to celebrate your loved one, as well as advice for processing and making it through these days.
Congenital Heart Disease Awareness Week
Annual week of awareness and advocacy for all congenital heart disease patients and families, February 7th-14th
Pregnancy & Infant Loss Remembrance Day
Worldwide remembrance day for families who lost a pregnancy or infant, held annually on October 15th
Children's Grief Awareness Day
Day recognizing the special needs of grieving children, held annually on November 19th
Worldwide Candle Lighting (WCL) Memorial Service
Worldwide day honoring lost loved ones, creating a 24-hour wave of light, held annually on December 8th at 7:00pm local time
Remembering Loved Ones During Holidays
Practical suggestions for remembering your loved ones during holidays, by What's Your Grief
Eva Burt Edinger
“My CHD went undetected for the first year and a half of my life. After being diagnosed with an Atrial Septal Defect, I underwent open heart surgery, spent several weeks in intensive care, and was not expected to live. Now, as an adult, I have no physical restrictions and I live life to the fullest!...Full Story>