Blyth Lord Oral History

Interviewee

Blyth Lord

Interviewer

Bryan Sisk MD, MSCI

Files

Related Oral Histories

Pediatric Palliative Care Oral History Project

Summary

Blyth Lord was interviewed by Brian Sisk on July 11, 2019 for approximately one hour and 16 minutes for the Pediatric Palliative Care Oral History Project.

Scope and Content

Ms. Lord begins the interview by recalling her early experience with her daughter and nephew who were both diagnosed with Tay-Sachs disease, but experienced very different types of end-of-life care. Ms. Lord, her husband, and her daughter had a pediatrician that was willing to work and assemble a care team for the family and ultimately provide a rewarding end-of-life experience. Ms. Lord’s nephew’s pediatrician was not similarly equipped and his family experienced stresses, particularly at his end of life, because of that. After reflecting on her daughter’s journey, Ms. Lord wanted the level of care she experienced to be accessible for anyone with Tach-Sachs, thus began her career in advocacy.

Ms. Lord then describes how she and her husband and brother- and-sister-in-law were able to bring all of their familial support together to develop the non-profit, The Lord Foundation, to fund research of Tay-Sachs and the advancement of pediatric palliative care.

Ms. Lord’s background in television and video production then aided her in completing two multimedia projects, Cameron’s Arc, a project with the American Academy of Pediatrics about delivering palliative care from a community-based pediatrician, and Parenting a Child with a Life-threatening Illness, a resource for families affected by Tay-Sachs, GM1, Sandhoff and Canavan disease. Ms. Lord was motivated by positive feedback from clinicians using these movies to teach the new generation of clinicians. She soon left her job to focus full time on developing the Courageous Parents Network (CPN). Ms. Lord says the scope of CPN was initially just for parents, to promote palliative care and help parents hear from other parents through videos, but it has since grown into a large and reputable educational platform for parents and clinicians alike.

Ms. Lord then goes on to describe that one of the primary goals of Courageous Parents Network is to orient and empower families of children with life-threatening diseases as advocates and decision-makers for their child, and to promote palliative care as critical to helping make that possible.

Ms. Lord concludes the interview by describing a series of goals she has; for other parents and families, to know that they always have options and they are not alone; for clinicians, to foster the skill set of palliative care to be a holistic provider.

Biographical Information: Interviewee

Blyth Lord is the founder and Executive Director of Courageous Parents Network, a not-for-profit focused on improving the experience of parents caring for children with life-limiting illness through education, advocacy and parent-to-parent support.

Ms. Lord's daughter, Cameron, and nephew, Hayden, died of Tay-Sachs disease in 2001. In the years since their deaths, Ms. Lord has overseen the Lord Foundation’s funding of pediatric palliative care research and program development. She has also promoted the needs of families caring for children with serious illness and how providers can best meet these needs. Drawing on more than 20 years of experience as a television producer at ABC News, Medical News Network, and WGBH, she produced the award-winning film, Cameron’s Arc with the American Academy of Pediatrics. The purpose of this film was to educate healthcare professionals working with families from the time of their child’s diagnosis through end-of-life care. Cameron’s Arc has been distributed nationally as a teaching tool to pediatric residency programs across the United States. She also produced The Parenting a Child with Life-Limiting Illness video with the National Tay-Sachs and Allied Diseases organization, as a resource for parents and the providers who work with them.

These successes inspired the inclusion of parent and provider story-telling and videos that are central to Courageous Parents Network, which she founded in 2013. A growing number of parents work with Ms. Lord and the staff in contributing to the Network and in continuously evolving its value to families.

Ms. Lord is an affiliate member of the American Academy of Pediatrics Section on Hospice and Palliative Medicine. Ms. Lord is the Board Chair of the patient-disease and advocacy group National Tay-Sachs and Allied Disease and until recently served on the Board of The Children’s Room, the Arlington, MA-based organization that provides bereavement support to families who have lost parents/siblings/children. She has a Master’s in Education and lives in Newton, Massachusetts with her husband and two daughters.

Biographical Information: Interviewer

Bryan Sisk, MD, MSCI is an Assistant Professor in Pediatric Hematology and Oncology and an Assistant Professor in General Medical Sciences as a member of the Bioethics Research Center at Washington University in St. Louis. He completed medical school at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. He completed his clinical training at St. Louis Children’s Hospital and Washington University School of Medicine.

Dr. Sisk was a clinical fellow in pediatric hematology and oncology when he initiated this Pediatric Palliative Care Oral History Project. As a trainee, Dr. Sisk had a strong interest in palliative care, the approach to the suffering of children, and the history of medicine. Prior to initiating this project, Dr. Sisk performed an in-depth review of the development of pediatric palliative care as a discipline and philosophy. This research culminated in a publication entitled, “Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children” in the journal Pediatrics. However, this historical review was limited to textbooks and publications. It lacked the personal experience of caring for these children and inspiring the development of a new clinical discipline. Inspired by David Clark’s oral history of the adult hospice movement, Dr. Sisk began to plan this pediatric oral history project.

Of note, this collection of oral histories is incomplete, and many important figures have not (yet) been interviewed. Dr. Sisk’s goal is to continue adding to this collection create a rich repository of personal insights and wisdom from leaders who changed the field of pediatrics.

Interview Date

2019-07-11

Collection Identifier

OH154-S23

Length

Approximately one hour and 16 minutes.

Restrictions

Users wishing to publish (in whole, or in part) content taken from the audio or transcript of this oral history interview must request, sign, and return a Statement of Use form to the Becker Archives. For detailed information regarding publication and use of this oral history, contact the Becker Archives (arb@wusm.wustl.edu).

Recommended Citation

Blyth Lord Oral History, OH154-S23, Bernard Becker Medical Library Archives, Washington University in St. Louis.

Notes

Access to the audio recording for this oral history may be obtained via approval of the archivists at Becker Library. Contact the archives for more information (arb@wusm.wustl.edu).

Disclaimer

The Becker Archives provides access to this oral history interview as a record of the past. This interview reflects the attitudes, perspectives, and beliefs of the interview participants, which may reflect outdated, biased, and offensive views and opinions. The Becker Archives does not endorse the views expressed in this interview, which may contain materials offensive to some users.