Erin Bowen, MD
I am hoping you will take a few minutes out of your busy day to read the attached information sheet about SUDC, Sudden Unexplained Death in Childhood. SUDC is the sudden and unexpected death of a child 12 months of age or older which remains unexplained after a thorough death investigation is conducted. We have tried to raise awareness in the medical community during March, which was SUDC Awareness Month.
I am a pediatrician and I was unaware of SUDC until it affected our family directly when our happy and healthy 17-month-old son Conor died during a nap on October 25, 2016. His cause of death was undetermined. Our world was shattered with Conor’s death. I felt betrayed by my medical education that I did not know this could occur. My colleagues were equally unaware of SUDC. Fortunately, we were connected to the SUDC Foundation, where we were given the opportunity to connect with other families who had experienced similar losses. We received emotional support and an opportunity to participate in a research study free of charge.
According to CDC data, approximately 400 children between the ages of 1 and 18 are affected by SUDC annually. It is the fifth leading category of death in children between the ages of 1 and 4 and yet it is not a part of medical education and there is no federal funding to support research. Sadly, due to this lack of awareness, many pediatricians do not feel equipped to manage the needs of these families. Perhaps you will only see 1 family in your career affected by SUDC, but you will make a tremendous difference if you can support them through this unthinkable tragedy.
How you can help:
- Read the attached SUDC information sheet
- Visit the SUDC website: sudc.org. There is a specific section for medical professionals where you can learn more about the current research and how you can help an affected family, including recommended screening for siblings and grief support resources.
- If you have an affected family, you can support them in the following ways:
- Contact the family to express your condolences and identify their needs and desires for how involved they would like you to be.
- Contact the medical examiner early and set up a plan for ongoing communication throughout the death investigation. Ask for an anticipated date for the final results so that you can prepare the family, recognizing that it may take up to 6 months before the investigation is complete.
- Refer the family to the SUDC Foundation for opportunities for emotional support and research opportunities. These services are provided to families free of charge. Families can be referred to the Foundation before the autopsy is complete. Even if a cause of death is found, the Foundation can support these families.
- When the autopsy is complete, offer the family an opportunity to sit down and read it and review it with them.
- Utilize the resources on the SUDC website sudc.org to familiarize yourself with recommendations for screening for siblings and bereavement resources for families.
- Connect the family with local bereavement support resources, for example: support groups through local churches and The Compassionate Friends.
- Call and check in at regular intervals, recognizing that the family’s needs may change over time.
- Share this information with your colleagues. With more awareness, there will be more funding, more research and prevention of these deaths.
If you have questions, the SUDC Foundation is very responsive and you can contact them directly at email@example.com or you can contact me at firstname.lastname@example.org. I have attached pictures of Conor in the links below so you can put a face to our story.
Thank you for your time!
Erin Bowen, MD