SUDC Foundation

11/24/2020

Please consider a gift to the SUDC Foundation on Giving Tuesday December 1, 2020. If we can raise $20,000, it will be matched dollar for dollar up to $20,000. This incredible 100% match is made possible through the generosity of the Moss Pieratt Foundation. "The SUDC Foundation has always been there for our family since we lost our son Moss in 2014. We are honored to be able to support the SUDC Foundation this Giving Tuesday by providing a challenge grant through the Moss Pieratt Foundation. Together, we will find a future free of SUDC." J and Jessica Pieratt
To make a donation click here: https://sudc.org/donate/

#mosspierattfoundation #givingtuesday #sudc #sudcawareness #supportnonprofit#childlosssupport #suddenunexplaineddeathinchildhood #parentafterloss #lifeafterloss #grief #griefjourney #inourhearts #childrengonetoosoon

11/23/2020

We appreciate you keeping the SUDC Foundation and the families served close to your hearts all year long and especially during this season of giving. Check with your company to see if it has a matching program today, as the impact of your gift to the SUDC Foundation may be doubled or possibly tripled! If your company does offer a matching gift program, give online today and be sure to check 'Yes, my company will match my gift' to increase the impact of your donation. Gifts of all sizes help us reach a future free of SUDC.

#sudc #sudcawareness #matchinggiftprogram #futurefreeofsudc

11/20/2020

"Family comes together, For always and forever, Without any reason, Anytime or any season. Family comes together, For always and forever, In death or in life, In happiness or in strife. Family comes together, For always and forever." Thank you to Tyra and Tyler for the reading of this beautiful poem by Glaedr. The SUDC Foundation supports over 1,000 families in 21 countries. Our families need you now more than ever. Please donate today. If you are grieving the sudden death of a child, join our community.

#sudc #sudcawareness #support #childlosssupport #sudpeds #suddenunexplaineddeathinchildhood #parentafterloss #lifeafterloss #grief #griefjourney #inourhearts #awareness

11/19/2020

Dr. Elizabeth Bundock and Dr. Kristen Landi were joined by SUDC Foundation President Laura Gould Crandall, MA to present at the New York City Office of the Chief Medical Examiner today. The group presented on the first national consensus guidelines to fill crucial needs to help identify why unexplained pediatric deaths happen and support families after these tragedies. These guidelines are the focus of a groundbreaking book, Unexplained Pediatric Deaths: Investigation, Certification and Family Needs. See http://sudpeds.com/ to purchase the publication or for more information.

#sudc #sudcawareness #support #childlosssupport #sudpeds #suddenunexplaineddeathinchildhood #parentafterloss #lifeafterloss #grief #griefjourney #inourhearts #awareness

11/19/2020

“When a child dies, siblings are often referred to as the ‘forgotten mourners.’ They are left to grieve their sibling while also experiencing what feels like the loss of their parents as they mourn." -Dr. Erin Bowen, SUDC Foundation Vice President. According to the New York Life Foundation, an estimated 1 in 14, or 5.2 million, children in the U.S. will experience the death of a parent or sibling before they reach the age of 18. Today is Children's Grief Awareness Day and November is Children's Grief Awareness Month, a time to bring awareness to the unique way children grieve. Today, this month, and always, the SUDC Foundation is here to support siblings who have lost their brother or sister too soon. If you or your family is looking for support the SUDC Foundation is here to help, contact us here

https://sudc.org/services-for-bereaved-families/

#retreat #sudcawareness #sudc #support #childlosssupport #suddenunexplaineddeathinchildhood #parentafterloss #lifeafterloss #grief #griefjourney #inourhearts #awareness #parentsupport #familysupport

11/18/2020

Elizabeth Milliken, SUDC Foundation Director of Development, is honored to receive a donation today from the Hagenlocher family on behalf of the Izzy Effect Foundation. The donation is made in memory of their daughter Isabella on what would have been her 5th birthday. Gifts like this from the Hagenlocher family help support the SUDC Foundation's mission to promote awareness, advocate for research, and support those affected by sudden unexpected or unexplained death in childhood. #theizzyeffect @theizzyeffect

#gratitude #donations #sudc #sudcawareness #foundation #support #sponsor #givingtuesday #nonprofitlove #togetherwegive #supportnonprofit #facebookfundraiser

11/18/2020

We hope you will think of the SUDC Foundation this season as Giving Tuesday approaches on December 1.
One of the ways to support our mission on this global day of giving is to donate through sudc.org or you can create a Facebook fundraiser so your friends and family can participate! Learn how to create a Giving Tuesday Facebook fundraiser:
https://sudc.org/facebook-fundraising/

#gratitude #donations #sudc #sudcawareness #facebookfundraiser

11/17/2020

This week's edition of The Microscope features Adeline's story, as lovingly told by her mother. Read on https://sudc.org/spotlight-on-sudc-adelines-story/

11/16/2020

Unexplained Pediatric Deaths, a groundbreaking new book for medicolegal and medical professionals, offers procedural guidance on scene investigation strategies, scene reenactments, collection of circumstance and historical data and proper documentation. We are thankful to Keegan's mom for sharing his story in the book. “Keegan was 8 months old with a loving 3-year-old sister at the time of his passing. At my husband's encouragement I held Keegan and then laid down with him in our bed. The police officers told me I needed to get out of the bed and leave Keegan so they could start an investigation. I needed more time.” – Keegan’s mom. Learn more and order at sudpeds.com

#sudc #sudcawareness #noonegrievesalone #sudpeds

11/13/2020

Please join SUDC Ambassador, mom and molecular biologist, Meghan Frey, for a fun lesson on DNA! Our DNA provides us with the building blocks for our bodies and who we are - they control our eye color, hair color, whether or not we have dimples and so much more! The lesson will be fun for kids (and adults) of all ages. Join us for hands-on experiments with things we have around the house where you will learn how to extract DNA! This activity will be recorded for those unable to join live. Contact [email protected] for additional information.

11/12/2020

Due to variations in investigations and the way deaths are certified- we do not know exactly how often SUDC occurs. This is why the advocacy work the SUDC Foundation does, and the research it funds, is so important. Consistency in recording unexplained deaths, improves our understanding of the magnitude of SUDC and allows for appropriate allocation of resources. Learn more about the work we do here: https://sudc.org/facts-statistics/

#sudcawareness #sudc #suddenunexplaineddeathinchildhood #sudcfacts #noonegrievesalone #childrengonetoosoon #childlosssupport

11/11/2020

We invite you to this Complicated Grief documentary free screening preview tomorrow, November 12 at 6pm ET. A Love That Never Dies is a personal journey by bereaved parents Jane Harris and Jimmy Edmonds and a love letter to their son Josh who died while traveling in Southeast Asia. They now honor him with their own journey, a road trip across the United States where they meet other families who have also lost a child and all of whom found grief isolating, transformative and ultimately life enhancing.
This event will be held on Zoom and will feature a 75-minute screening of the film followed by a conversation with Jane Harris and Jimmy Edmonds, facilitated by the Center for Complicated Grief's founding Director, Dr. Katherine Shear.

You can register here: https://www.eventbrite.com/e/a-love-that-never-dies-an-online-screening-tickets-122301945411?aff=site

11/10/2020

The holidays can be especially difficult for those who are missing loved ones. Whether you have lost someone you love, or love someone who has experienced loss, Option B is a great resource. Check out their website at: https://optionb.org/optionbthere/holidays

11/09/2020

Advocates for Research

We are advocates for research. We fund research, we perform research, we endorse research by others and we participate in related advocacy efforts.

Our SUDC community is strengthened by working together. We are making progress and have helped to provide explanations for some previously unexplained deaths. The SUDC Foundation will continue to work tirelessly to see a future free of SUDC.
Learn more at: https://sudc.org/advocate-for-research/

#sudc #sudcawareness #sudcresearch #sudcadvicacy #noonegrievesalone #childrengonetoosoon

11/06/2020

SUDC Family Support will be hosting virtual chat hours every Monday and Tuesday evening this month to meet the diverse needs of our community. Check out our calendar for complete details or e-mail [email protected] for links and information! sudc.org/events/

#sudc #sudcfamilysupport #noonegrievesalone

11/05/2020

Donors throughout the United States continue to raise funds to support the distribution of complimentary copies of the recently published book Sudden Unexpected Death in Pediatrics. Reading with Olivia in memory of Olivia Butash, the Scarlett Lillian Pauley Foundation in memory of Scarlett Pauley, and the Slade Dozier Foundation in memory of Slade Dozier, have raised funds to purchase 225 books to be distributed to medicolegal death professionals in their home states of Michigan, Pennsylvania, and South Carolina. If you're interested in hosting a fundraiser in your area to provide copies to medicolegal death professionals, contact [email protected]

#sudcawareness #sudc #suddenunexplaineddeathinchildhood #noonegrievesalone

11/04/2020

No one grieves alone at the SUDC Foundation. We offer a safe and supportive online community for the over 1,000 families we support in 21 countries. We also offer a peer support program to match trained family volunteers with newly bereaved families. If we can help you, please contact us at [email protected]

#sudcawareness #sudc #suddenunexplaineddeathinchildhood #noonegrievesalone
#familysupport #childrengonetoosoon #parentafterloss #lifeafterloss #grief #worldwide #griefjourney #inourhearts

11/03/2020

This morning, Erin Bowen, MD, Pediatrician and SUDC Foundation Vice President and Kristen Landi, MD, Forensic Pathologist and NYC Medical Examiner presented Pediatric Grand Rounds virtually at Maimonides Children's Hospital in Brooklyn, NY to a diverse audience of pediatricians, pediatric emergency room physicians and pediatric specialists. These presentations provide a unique opportunity for discussion across specialties on how to provide collaborative care to support families after the sudden and unexpected death of a child.

#sudcawareness #sudc #grandrounds #pediatrician #pathologist

11/03/2020

In today’s edition of The Microscope, we feature a piece written by Stacy Drake, Ph.D, M.P.H., RN, who serves on the Panel on Sudden Unexpected Death in Pediatrics, an expert panel convened by the National Association of Medical Examiners to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children to determine research needs and the sensitive care of families affected. This piece was originally featured in the October 2020 edition of the newsletter for the American Board of Medicolegal Death Investigators.
Each year in the United States, more than 3,000 infants and children die suddenly, unexpectedly and without explanation, even after an investigation and autopsy. While the number of deaths in children under the age of 1 declined in the 1990s, it has plateaued for the last two decades. These unexplained pediatric deaths have profound effects on families, as well as serious implications for our medicolegal death investigation system, public health system and society at large.

In 2016, the National Association of Medical Examiners (NAME) led an effort in collaboration with the American Academy of Pediatrics (AAP) to create a working group to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children, to determine research needs and the sensitive care of families affected. The work was funded by a grant from the Sudden Unexplained Death in Childhood (SUDC) Foundation. SUDC is a category of death in children between the ages of 1 and 18 that remains unexplained after a thorough investigation, including an autopsy. The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research, and support those affected by SUDC.

This working group established the first ever-national consensus guidelines in the U.S. to fill crucial needs for determining why unexplained pediatric deaths happen and how to support families after these tragedies. The guidelines were recently published in a book, Unexplained Pediatric Deaths: Investigation, Certification and Family Needs.

The publication is a combined effort of more than thirty multidisciplinary contributors from across the country, including medical examiners, pediatricians, federal agency representatives in public health, clinical subspecialists (neurology, cardiology, child abuse, injury prevention, infectious diseases, genetics and metabolic diseases), researchers, epidemiologists and family advocates.

I was honored to serve within this diverse committee representing the death investigation community. I gained profound insight during the meetings when hearing from family members whose child had died a sudden unexpected death.

The first insight came when a family member discussed how it felt to receive a copy of their child’s autopsy report in the mail. As a death investigator, we are conscious of the challenges encountered when talking with family after a sudden death especially the sudden death of an infant or child. After conducting the interview, I always believed that offering something at the close of the conversation was helpful. For me, this usually meant offering the family an opportunity to request a copy of the death investigation and autopsy report. Listening to this mother/father, I learned that receiving it can re-traumatize the family member. I learned that how the report is delivered is critical. Families often do not appreciate reading about the actual procedure, organ weights, or pathological finding of their loved one. Our working group suggested that a cover letter providing details of what the report contains should be provided with the report. It can help the family when this letter is reviewed with their healthcare provider and/or the forensic pathologist. Today, when I am speaking to bereaved families, I often let them know that a copy of the autopsy report can be provided; however, we would like to discuss these findings with them personally, first.

The other insight I gained was how to approach the family during the time following their loss. Families offered stories about some of the good and hurtful experiences they encountered with their death investigator. These brief but memorable interactions left an imprint with families. With this insight, I learned that despite feeling the stress, I need to stop and pay attention to both my verbal and non-verbal communication.

The most important thing I took away was that the work that we do in death investigations is important and is valued by surviving families, healthcare providers, forensic pathologists and has the potential to impact the health of our communities and lead to further reductions in infant and child deaths.
Being a part of this working group has been invaluable to me professionally, and the publication we produced is an invaluable resource for medicolegal professionals. Without national standards for investigating these deaths, our ability to understand and prevent them in the future is severely handicapped. A standardized approach to death investigation and certification may improve surveillance, accuracy of data and prevention strategies.

Following are some of the recommendations applicable to medicolegal death investigators. To learn more and purchase the book, please visit sudpeds.com.

Medicolegal Death Investigation:
• Any child death falling under the jurisdiction of a medical examiner/coroner should be investigated by a certified medicolegal death investigator who is independent from law enforcement.
• Investigators should gather as much health history on the child as possible including records from his/her mother’s obstetrician, birth hospital, pediatrician, other hospitals and emergency treatment, and school.
Family Needs and Professional Relations:
• Professionals should maintain an unbiased, non-accusatory approach to parents to prevent further trauma.
• Open and timely communication with a single point of contact helps to foster positive long-term bereavement outcomes.
Autopsy and Ancillary Testing:
• An autopsy must be performed in all sudden unexpected deaths in infants and children unless prohibited by law (such as in cases of religious objection in certain states).
• Communication with the family should be considered a step in the autopsy and the family should have the opportunity to ask questions of the pathologist to best understand the findings in the report.
Death Certification and Surveillance:
• The authors promote the use of a “synoptic” report to clarify key findings not included on the death certificate but that are essential to improve surveillance and research. It also limits the use of acronyms to improve accuracy, consistency in certification and reduce confusion.

Stacy Drake, Ph.D, M.P.H., RN, AFN-BC, D-ABMDI, is an associate professor at Center for Excellent in Forensic Nursing at Texas A&M University and has served on the National Association of Medical Examiners’ Panel on Sudden Unexpected Death in Pediatrics since 2016.