Angel Watch A Model of Perinatal Bereavement Support Branch of Intermountain Healthcare’s Maternal Fetal Medicine Department

“Yesterday, I talked with a mother in tears “Yesterday, I talked with a mother in tears. Five months pregnant with her second child, she has been grieving since an ultrasound showed that her unborn child has anencephaly…She related that while the physicians who diagnosed this were supportive, she has been left to herself to find information and comfort…[In fact] countless families are left to deal with their loss by themselves…” Letter from Dr. William Cosgrove to Intermountain Healthcare Women’s Services – Dec. 16, 2004 Not only have the families expressed their need for help, but the physicians have, too.

With ultrasounds and other prenatal diagnostic tools, patients can learn much more about their baby in utero than if the baby is a boy or a girl… What if their health provider tells them that their unborn child is likely to die at birth or very shortly afterward because of a potentially lethal diagnosis? Are they given the support they need? They were grateful for the medical providers – but 10 minutes in the office just wasn’t enough for many of them.

“ “The point of diagnosis is one of the worse times in a family’s grief journey when it comes to the loss of a child.” “Conversations with Parents Who Lost a Child To a Life-Threatening Illness: - June 2001

Similar statistics throughout USA Sad Statistics 57% of all children who die in Utah from non-accidental causes are under 1 year of age (Utah Vital Records Index for 2002) 28% of these (or over ¼) have congenital malformations, deformation and chromosomal abnormalities which cause their death (Utah Vital Records Index for 2002) Similar statistics throughout USA “If we consider that roughly 0.5 percent to 1 percent (30,000 to 50,000 a year) of all live births have defects severe enough to cause fetal death, approximately 6,000 to 10,000 patients a year are possible candidates for perinatal hospice.” – Byron c. Calhoun, M.D. – “The Perinatal Hospice – Ploughing the Field of Natal Sorrow” – Frontiers in Fetal Health, 2000.

According to Dr. Deborah L. Davis, Ph. D According to Dr. Deborah L.Davis, Ph.D.… Six Reasons Why Perinatal Loss is Particularly Difficult 1. Feelings of responsibility 2. Loss of the idealized baby 3. Loss of part of yourself and your future 4. Lack of memories 5. Lack of social support 6. Lack of professional support Empty Cradle, Broken Heart – Surviving the Death of Your Baby, pgs. 4-8.

With potentially lethal diagnoses, options include: Perinatal Support Perinatal support is a new model of care beginning at the time of diagnosis for families who know before birth that their babies may die before, during, or shortly after birth. With potentially lethal diagnoses, options include: Termination or early induction of labor (depending on gestational age and laws of state.) 2. Aggressive medical intervention. 3. Comfort Care – where baby is allowed to have as comfortable and natural an experience of life as possible with little to no medical intervention.

Perinatal Hospice History 1970’s……………Early beginnings of perinatal bereavement support…Another way to deal with death of children in the hospital 1995………………Dr. Byron C. Calhoun pioneered “perinatal hospice” in his MFM practice at Madigan Army Medical Center (MAMC) in Tacoma, Washington 1990’s (late)………..Lizabeth Sumner, RN at San Diego Hospice focused on perinatal hospice needs – One of pioneering centers of this care 2000………………Dr. Byron C. Calhoun and Dr. Nathan J. Hoeldtke wrote article entitled “The Perinatal Hospice – Ploughing the Field of Natal Sorrow”, Published in “Frontiers in Fetal Health” 2000……………..Handful of perinatal hospice programs in USA. Angel Watch began in Utah as part of free-standing adult hospice company – Utah Heritage Hospice 2004…………….Approximately 20 perinatal support programs in USA 2006……………Approximately 40 perinatal support programs in USA – Angel Watch became part of Intermountain Healthcare in Utah Today……………Many, many more perinatal support programs throughout the United States and now many throughout the world!

Angel Watch Perinatal Support Offers Information and emotional support from trained professionals pre-birth– in a series of visits for as long as needed. Help in planning a Birth Plan – so that parents’ wishes are followed throughout hospitalization and thereafter. Guidance for other relationships - children, grandparents, friends, school, couple, etc. Ideas for honoring the child’s life – in the womb and out of the womb. Memorabilia and memorial service ideas . Bereavement support for up to 18 months after delivery as needed. …And because Angel Watch is funded primarily by donations to Intermountain Healthcare foundations, all services are without charge!

Angel Watch Mission Statement Our goal is to provide an extraordinary support and counseling service to families who receive a possibly lethal diagnosis for their unborn baby, whether in the Intermountain Healthcare system or not, as well as to … Educate the community and other professionals and non-professionals as to the needs of these families.

Memorabilia and Follow-up Care Angel Watch helps families make memories by providing a free gift of a Winnie Bear, made from a blanket that is wrapped around the baby at birth. The bear is lovingly stitched and a label is placed on the back that has the baby’s name and delivery information printed on it. These bears become special reminders of very special babies. More follow-up care is available for up to 18 months as needed.

Responses from Angel Watch families… “Thank you for everything.” “There really aren’t words to express our gratitude. Thank you so much.” “I don’t think we would have made it without your help. Thank you so much….” “What an incredibly powerful program.” “The Angel Watch program helped to make the saddest experience in our lives the most special and meaningful.” “How can we ever thank you for helping us to do the unimaginable?” “Words cannot express our deepest appreciation and gratitude for you and the Angel Watch program.” “If we can ever be of help to you or others, please don’t hesitate to call.”

From the experts… “Parental responses have been overwhelmingly positive. These parents are allowed the bitter-sweetness of their child’s birth and too-soon departure. Grief lessens as time passes and parents rest secure in the knowledge that they shared in their baby’s life and treated the child with the same dignity as a terminally ill adult.” “The Perinatal Hospice - Ploughing the Field of Natal Sorrow” - by Calhoun and Hoeldtke

Angel Watch Maintaining Hope and Quality of Life – No matter how long or short that life may be

Utah Vital Records Index for 2002 Birth Defect Network – State of Utah Sources: “Conversations with Parents Who Lost a Child to a Life-Threatening Illness” -Sponsored by the Utah Center for Medicare and Medicaid Services - Promoting HOPE Advisory Council - Summary Prepared by Zohreh Saunders - June 26, 2001 Calhoun, Dr. Byron and N.J. Hoeldtke “Perinatal Hospice” American Journal of Obstetrical Gynecology, Sept. 2001; 185(3): 525-9. Calhoun, B.C., and Hoeldtke, NJ (2000), “The Perinatal Hospice Ploughing the Field of Natal Sorrow”, Frontiers in Fetal Health, Vol. 2, No. 5. Utah Vital Records Index for 2002 Birth Defect Network – State of Utah Empty Cradle, Broken Heart - Surviving the Death of Your Baby, Dr. Deborah L. Davis, Ph.D, Fulcrum Publishing, Golden, CO,1996 www.perinatalhospice.org – Listings of all known perinatal hospice services

Angel Watch For information please call Carolyn Kasteler, RN BSN Director of Angel Watch in Salt Lake City, UT 801-698-4486 – Cell Phone carolyn.kasteler@imail.org angelwatch@imail.org