Robert’s Program on Sudden Unexpected Death in Pediatrics (SUDP)

Patient Resources

A message for SIDS parents and families from Dr. Kinney and Dr. Goldstein

The sudden and unexpected death of a child is terrible tragedy. In most cases there are no warning signs that would have alerted you. This tragedy can affect any family; the sudden and unexpected death of a child happens to the most loving and caring parents.

We are here to help, free of cost to you and your family. Robert’s Program strives to support you in navigating this overwhelming situation. We are available to guide you through your questions, concerns, and process of finding an explanation for your child’s death. Our main focus is to provide medical information and the most state-of-the art testing. Our professionals are well versed in dealing with grief, as well as other networks available:

Information resources

Over 2,500 infants die suddenly and unexpectedly each year. Below are links that connect you to the best information and local and national resources:

Acronyms and terminology

SIDS: Sudden Infant Death Syndrome is the sudden death of an infant younger than 1 year of age that cannot be explained even after a full investigation that includes a complete autopsy, examination of the death scene, and review of the clinical history.

SUID: Sudden Unexplained Infant Death is the death of an infant younger than 1 year of age that occurs suddenly and unexpectedly with no evidence for cause of death.

SUDC: Sudden Unexplained Death In Childhood is the sudden and unexpected death of a child over the age of 1 year, which remains unexplained after a thorough autopsy and case investigation is conducted.

SUDP: Sudden Unexpected Death in Pediatrics is an encompassing term regarding the sudden unexplained death of all children in the pediatric age range.

SUDEP: Sudden Unexpected Death in Epilepsy is the sudden, and non-traumatic and non-drowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected.

SCDY: Sudden Cardiac Death of the Young The sudden unexpected death in an otherwise healthy person within 1 hour after onset of symptoms or, when unwitnessed, within 24 hours after the person was last seen in good health.

Coping with a tragic loss

What is grief?

Grief can be described as the intense emotional and physical pain that is experienced after significant loss. Grief tends to follow a wave-like pattern with many ups and downs and different triggers. How we react when someone we love dies will be different for each of us because grief is unique. No two people will grieve in the same way – even parents of the same child. While grief can be an excruciatingly painful and isolating experience, it is a normal response to loss that tends to ease over time.

Common reactions

If your child has recently died, you most likely will experience many different emotions that come and go, often in quick succession. You may feel incredibly sad, overwhelmed, guilty or numb. You might be operating on automatic pilot and wonder whether you will ever feel like your old self again.

You may also be in a total state of shock and experience feelings of anxiety or panic. You might have trouble sleeping or not feel like eating. Given the suddenness of your child’s death, you may be replaying the events of the days leading up to their death and have many unanswered questions. If you are dealing with the medical or legal authorities, you might feel stressed and out of your depth. How long these reactions last will vary from person to person. While some of these reactions will ease in the first weeks, it is likely that others will persist for months. Anticipating these reactions and seeking support, will likely make them easier to manage.

Helpful strategies

Even though there is nothing that anyone can do to take away your pain and sense of loss, we believe there are some things you can do to feel a little more control of your grief, especially in the early days. These include following a simple routine, making time for your own self-care, creating a ‘to-do’ list of things you need to achieve each day, and building a support network.

Follow a simple routine: Try to develop a simple daily routine as soon as you can because it provides a structure to your day. A routine helps because you don’t need to think too much about what to do next, saving your energy for other things.
Self-care: Because grief is a huge stressor, we recommend that you see your own doctor and make time to do some of the things that normally would re-charge your batteries.
Create a ‘to-do’ list: You most likely will have many things to do and people to speak to. It can be helpful to keep track of what you need to do and to prioritize tasks.
Create a support network: Because grief is a lonely and isolating experience, we recommend that you begin to develop your own support network comprised of close friends and family, your primary care doctor, a bereavement support group with other bereaved parents, and a grief counselor. If at any time, you feel as though you are getting worse or have thoughts of harming yourself, seek professional help immediately. Talk to your family doctor or a licensed mental health clinician about available options.

Robert’s Program