Robert’s Program | Services

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Contact the Robert's Program

Our multidisciplinary team brings together leading experts in the field of SUDP. Our directors and specialists have years of experience in clinical practice and academic research in SUDP. We will support you and your family to try to make sense of things in the aftermath of your loss.

Robert’s Program offers clinical assessment and diagnostic tests free of charge to any child who has died suddenly and unexpectedly in Massachusetts. Once written consent is obtained, we thoroughly investigate every child to the greatest extent possible. We will work with your family to keep you updated on our progress as we make our best efforts to understand how your child might have died. We offer the following services:

  • An extensive clinical history review of your child’s medical records and mother’s pregnancy and delivery records
  • Multi-generation family tree with complete medical history of your family
  • In depth genetic evaluation of the child and parents to understand cause of death and risks to other family members
  • Standardized approach to autopsy, including specialized, advanced testing not typically available
  • A joint case review between Robert’s Program and the Massachusetts Office of the Chief Medical Examiner (OCME) for pathologists to complete a comprehensive diagnosis and determination
  • Input on general autopsy findings and conclusions prior to the medical examiner’s final conclusions
  • Explanation of all conclusions and findings with the medical examiner in attendance
  • A final report thoroughly explaining the findings of the Massachusetts OCME
  • Referrals for the evaluation of findings that may affect the health of living members of the family
  • Availability to answer any questions and address concerns throughout the investigation

Please contact us at any time.

Robert’s Program Bereavement Resources

Bereavement Support

Robert’s Program provides bereavement support to Massachusetts families who are enrolled in the program, during the initial months and beyond. This support includes meetings with a bereavement specialist, either individually or as a couple, support groups with other bereaved parents who are also enrolled in Robert’s Program, scheduled phone calls, and referral information. We also provide general information about coping with grief in our bereavement guide “When Grief is New: A guide for parents dealing with the sudden, unexplained death of a young child”

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

Please note, that at this time, our clinical program is only able to provide services to families in the state of Massachusetts. If your family resides outside of Massachusetts, we welcome you to be a part of our research registry.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337