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Angel WatchAngel WatchA Model of Perinatal Bereavement A Model of Perinatal Bereavement
SupportSupport
Branch of Intermountain Healthcare’sBranch of Intermountain Healthcare’sMaternal Fetal Medicine DepartmentMaternal Fetal Medicine Department
““Yesterday, I talked with a mother in tears. Five Yesterday, I talked with a mother in tears. Five months pregnant with her second child, she has months pregnant with her second child, she has been grieving since an ultrasound showed that been grieving since an ultrasound showed that her unborn child has anencephaly…She related her unborn child has anencephaly…She related that while the physicians who diagnosed this that while the physicians who diagnosed this were supportive, she has been left to herself to were supportive, she has been left to herself to find information and comfort…[In fact] countless find information and comfort…[In fact] countless families are left to deal with their loss families are left to deal with their loss by by themselves…”themselves…”
Letter from Dr. William Cosgrove to Intermountain Healthcare Letter from Dr. William Cosgrove to Intermountain Healthcare Women’s Services – Women’s Services –
Dec. 16, 2004Dec. 16, 2004
With ultrasounds and other prenatal With ultrasounds and other prenatal diagnostic tools, patients can learn diagnostic tools, patients can learn
much more about their baby in utero much more about their baby in utero than if the baby is a boy or a girl…than if the baby is a boy or a girl…
What if their health provider tells them What if their health provider tells them that their unborn child is likely to die that their unborn child is likely to die
at birth or very shortly afterward at birth or very shortly afterward because of a potentially lethal because of a potentially lethal diagnosis? Are they given the diagnosis? Are they given the
support they need?support they need?
““
“ “The point of diagnosis is one of the worse The point of diagnosis is one of the worse times in a times in a
family’s grief journey when it comes to family’s grief journey when it comes to the loss of a child.” the loss of a child.”
““Conversations with Parents Who Lost a Child To a Life-Threatening Illness: - June 2001Conversations with Parents Who Lost a Child To a Life-Threatening Illness: - June 2001
Sad StatisticsSad Statistics 57% of all children who die in Utah from non-accidental causes are under 1 year of age 57% of all children who die in Utah from non-accidental causes are under 1 year of age
(Utah Vital Records Index for 2002)(Utah Vital Records Index for 2002)
28% of these (or over ¼) have congenital malformations, deformation and 28% of these (or over ¼) have congenital malformations, deformation and chromosomal chromosomal
abnormalities which cause their death abnormalities which cause their death (Utah Vital Records Index for (Utah Vital Records Index for 2002)2002)
Similar statistics throughout USASimilar 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 Six Reasons Why Perinatal Loss is
Particularly DifficultParticularly 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.
Perinatal SupportPerinatal SupportPerinatal support is a new model of care Perinatal support is a new model of care beginning at the beginning at the
time of diagnosis time of diagnosis for families who know for families who know before birthbefore birth that that their babies may die before, during, or shortly after birth.their babies may die before, during, or shortly after birth.
With potentially lethal diagnoses, options include:With potentially lethal diagnoses, options include:1.1. Termination or early induction of labor (depending on gestational Termination or early induction of labor (depending on gestational
age and laws of state.)age and laws of state.)
2. Aggressive medical intervention.2. Aggressive medical intervention.
3. Comfort Care – where baby is allowed to have as comfortable and 3. Comfort Care – where baby is allowed to have as comfortable and natural an natural an
experience of life as possible with little to no medical experience of life as possible with little to no medical
intervention. intervention.
Perinatal Hospice Perinatal Hospice HistoryHistory
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 OffersAngel Watch Perinatal Support Offers
1. Information and emotional support from trained professionals pre-birth– in a series of visits for as long as needed.
2. Help in planning a Birth Plan – so that parents’ wishes are followed throughout hospitalization and thereafter.
3. Guidance for other relationships - children, grandparents, friends, school, couple, etc.
4. Ideas for honoring the child’s life – in the womb and out of the womb.
5. Memorabilia and memorial service ideas .
6. 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 Angel Watch Mission StatementStatement
Our goal is to provide an Our goal is to provide an extraordinary extraordinary support and counseling servicesupport and counseling service to families to families who receive a possibly lethal diagnosis for who receive a possibly lethal diagnosis for their unborn baby, whether in the their unborn baby, whether in the Intermountain Healthcare system or not, as Intermountain Healthcare system or not, as well as to …well as to …
EducateEducate the community and other the community and other professionals and non-professionals as to professionals and non-professionals as to the needs of these families.the needs of these families.
Memorabilia and Follow-up Memorabilia and Follow-up CareCare
Angel Watch helps families make memories by Angel Watch helps families make memories by providing a free gift of a Winnie Bear, made from providing a free gift of a Winnie Bear, made from a blanket that is wrapped around the baby at a blanket that is wrapped around the baby at birth. The bear is lovingly stitched and a label is birth. The bear is lovingly stitched and a label is placed on the back that has the baby’s name and placed on the back that has the baby’s name and delivery information printed on it. These bears delivery information printed on it. These bears become special reminders of very special babies. become special reminders of very special babies. More follow-up care is available for up to 18 More follow-up care is available for up to 18 months as needed. months as needed.
Responses from Angel Watch familiesResponses from Angel Watch families……
““Thank you for everything.”Thank you for everything.”
““There really aren’t words to express our gratitude. Thank you so much.”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….”I don’t think we would have made it without your help. Thank you so much….”
““What an incredibly powerful program.”What an incredibly powerful program.”
““The Angel Watch program helped to make the saddest experience in our lives the most special and The Angel Watch program helped to make the saddest experience in our lives the most special and meaningful.”meaningful.”
““How can we ever thank you for helping us to do the unimaginable?”How can we ever thank you for helping us to do the unimaginable?”
““Words cannot express our deepest appreciation and gratitude for you and Words cannot express our deepest appreciation and gratitude for you and the Angel Watch program.”the Angel Watch program.”
“If we can ever be of help to you or others, please don’t hesitate to call.”
From the experts…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 The Perinatal Hospice - Ploughing the Field of Natal Sorrow” Sorrow”
- by Calhoun and - by Calhoun and Hoeldtke Hoeldtke
Angel WatchAngel Watch
Maintaining Hope and Quality of Life – Maintaining Hope and Quality of Life –
No matter how long or short that life may beNo matter how long or short that life may be
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 WatchAngel Watch
For information please call Carolyn Kasteler, RN For information please call Carolyn Kasteler, RN BSN BSN
Director of Angel Watch in Salt Lake City, UTDirector of Angel Watch in Salt Lake City, UT
801-698-4486 – Cell Phone801-698-4486 – Cell [email protected]
