Resources for Families

General Support Groups

988 Suicide and Crisis Lifeline
https://988lifeline.org/
The Compassionate Friends Supporting Family After a Child Dies
https://www.compassionatefriends.org/
MISS (Mother in Sympathy & Support) Foundation
https://www.missfoundation.org/
National Alliance for Children’s Grief (NACG), nacg.org

Specific Support Groups

SUID/SIDS:

Cribs for Kids
https://cribsforkids.org/
First Candle Saving Babies Supporting Families
https://firstcandle.org/
Share Pregnancy and Infant Loss Support
https://nationalshare.org/
Sudden Unexplained Death in Childhood (SUDC) Foundation
https://sudc.org/
The TEARS Foundation
https://thetearsfoundation.org/
The Compassionate Friends, www.compassionatefriends.org

Cardiac (Heart):

Children’s Cardiomyopathy Foundation
https://www.childrenscardiomyopathy.org/
Hypertrophic Cardiomyopathy Association (HCMA)
https://4hcm.org/
National Coronary Anomalies Foundation (NCAF)
https://www.nationalcoronaryanomalies.org/
Parent Heart Watch
https://parentheartwatch.org/
Sudden Arrhythmia Death Syndrome Foundation
https://sads.org/
Project ADAM, projectadam.com/ProjectADAM

Epilepsy/Seizures:

Citizens United for Research in Epilepsy (CURE)
https://www.cureepilepsy.org/
Danny Did Foundation
https://www.dannydid.org/
Epilepsy Foundation
https://www.epilepsy.com/

State-Specific Resources for Medical Evaluation of Surviving Family Members

California

If heart disease is identified or death remains unexplained:

University of California San Francisco

San Francisco Postmortem Systematic Investigation of Sudden Cardiac Death (POST SCD) Study
- www.cardiology.ucsf.edu/research/programs/post/
Cardiovascular Genetics Program
- https://www.ucsfhealth.org/clinics/cardiovascular-genetics-program

Delaware

If heart disease is identified or death remains unexplained:

A.I. duPont Hospital, 302-651-4000

If the child has epilepsy or history of seizures:

Epilepsy Foundation of Delaware
- https://www.epilepsy.com/local/delaware

Indiana

If heart disease is identified or death remains unexplained:

Riley Children’s Health / Indiana University Health, Benjamin Helm, MS, LCGC, 317-274-3901, bmhelm@iu.edu
- Genetics, 317-274-3901
  - https://www.rileychildrens.org/departments/cardiovascular-genetics-program
- Cardiology, 317-274-8906
  - https://www.rileychildrens.org/departments/cardiology
- Neurology/epilepsy, 317-948-7450
  - https://www.rileychildrens.org/departments/neurology

Michigan

If heart disease is identified or death remains unexplained:

C.S. Mott Children’s Hospital – University of Michigan Congenital Heart Center, 734-764-5176
Children’s Hospital of Michigan – Cardiology, 313-652-1305
Spectrum Health Cardiovascular Medicine, 616-885-5000 (Adult)
Helen DeVos Children’s Hospital HDVCH Inherited Arrhythmia and Cardiogenetics Program, 616-267-9150 (Pediatrics)
University of Michigan at Grand Rapids, 616-252-5970
Bronson Pediatric Cardiology, 269-341-8786

If the child has epilepsy or history of seizures:

University of Michigan Neurology, 734-936-4179
Children’s Hospital of Michigan Neurology, 888-362-2500
Helen DeVos Children’s Hospital Neurology, 616-267-7600
Bronson Pediatric Neurology, 269-341-7654

Genetic Counseling:

Spectrum Health Medical Genetics, 616-391-2700
Certified Genetic Counselor, Patty Arscott 734-764-5176

Bereavement Support:

Centrica Grief Support Groups, centricacare.org/family-support/grief-support/
Faith45 One-on-One Grief Mentoring, faith-45.com/pages/one-on-one-mentoring
Scolnik Healing Center, https://harborhospicemi.org/services/grief-support/

Minnesota

If heart disease is identified or death remains unexplained:

Minneapolis Heart Institute Genetic Arrhythmia Center, 612-775-3905, 1-800-582-5175
- www.allinahealth.org/Minneapolis-Heart-Institute/Programs-and-services/Genetic-Arrhythmia-Center/
University of Minnesota Genetic Counseling Services
- www.mhealth.org/care/services/genetic-counseling

Nevada

If heart disease is identified or death remains unexplained:

Children’s Heart Center Nevada, 702-732-1290, 775-324-6644
- www.childrensheartcenter.com

If the child has epilepsy or history of seizures:

Epilepsy Foundation of Nevada, 877-467-3496
- www.epilepsy.com/local/nevada

New Hampshire

Coming soon…

Ohio

Coming soon…

Pennsylvania

If heart disease is identified or death remains unexplained:

Children’s Hospital of Philadelphia (CHOP)
- Electrophysiology and Heart Rhythm Program, 215-590-4040
  - https://www.chop.edu/centers-programs/electrophysiology-and-heart-rhythm-program
- Division of Human Genetics, 215-590-2920
St. Christopher’s
- Heart Center for Children, 215-427-4820
- Clinical Genetics, 215-427-8413

If the child has epilepsy or history of seizures:

Children’s Hospital of Philadelphia (CHOP)
- Pediatric Epilepsy Program, 215-590-1719
St. Christopher’s
- Epilepsy Center, 215-427-3878

South Carolina

If heart disease is identified or death remains unexplained:

Medical University of South Carolina, 843-792-2300
- Shawn Jenkins Children’s Health Pediatric & Congenital Heart Center
  - muschealth.org

Bereavement Support:

Bridges of Hope, bridgesSC.org, 843-216-7323
CORAL Bereavement Program & Services, MUSCKids.org
- SJCHgrief@musc.edu
Charleston Dorchester Mental Health Center, charlestondorchestermhc.org, 843-414-2350

Utah

If heart disease is identified or death remains unexplained:

Intermountain Heart Institute Genetic Heart Disease Program
- Adult Cardiovascular Genetic Counseling, 801-507-4600
Primary Children’s Hospital Cardiology Clinic, 801-213-3599

If the child has epilepsy or history of seizures:

Primary Children’s Pediatric Neurology Clinic, 801-213-3599
Primary Children’s Genetics Clinic
- Genetic counseling, 801-213-3599

Virginia

If heart disease is identified or death remains unexplained:

Children’s Hospital of the King’s Daughters
- Pediatric Cardiology, 757-668-7214
- Pediatric Neurology, 757-668-9920