Perinatal Hospice and Palliative Care

A Gift of Time

Perinatal hospice/palliative care programs and support

As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, more than 100 pioneering hospitals and hospices in the U.S. and other countries have started providing perinatal hospice/palliative care for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth.

A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby's family. Perinatal hospice is not a place; it is more a frame of mind. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice (see A Gift of Time and the resources for parents and caregivers on this site).

Because the concept of perinatal hospice and palliative care is relatively new, programs and groups listed below may vary in their scope of support and services. Many of the programs listed below are hospital- or clinic-based, some are hospice-based, and a few are faith-based or independent.

United States

ARIZONA

MISS Perinatal Palliative CARES Program. Contact: (602) 279-MISS (6477) or (888) 455-MISS (6477)

EMBRACE Palliative Care Foundation. Contact: Berdette Carrasco RNC or Dana Southworth LMSW, (623) 330-4963 or email.

CALIFORNIA

Angel Babies/Bebitos Angelitos of Hinds Hospice, Fresno and Merced, California

Compass Care Pediatric and Perinatal Palliative Care Program, University of California San Francisco Medical Center. Contact: Tina Ratto RN MSN, (415) 353-7558.

Haven Hospice, Signal Hill, California

St. Joseph Health System Perinatal Comfort Care, Orange, California

San Diego Hospice and The Institute for Palliative Medicine perinatal program, (619) 688-1600. San Diego, California

Skye's Angels Perinatal Hospice, Hospice of the East Bay, Pleasant Hill, California

TrinityCare Hospice TrinityKids Care. Contact director Gay Walker, (310) 530-3800. Los Angeles, California

Walk to Remember, Inland Empire. Contact: Amanda Balderrama RN, (909) 235-WALK. Riverside/San Bernardino/Ontario, California

COLORADO

Fetal Concerns Program of the Colorado High Risk Maternity and Newborn Program, a collaborative program of the Department of Neonatology at The Children's Hospital and the Departments of Obstetrics and Gynecology and Women’s and Infants' Services at the University of Colorado Hospital. Contact Fetal Concerns Coordinator Nancy English PhD RN, (720) 777-8826. Denver, Colorado

The Denver Hospice. Contact: Krista Newton, LCSW, (303) 388-7949 x1235. Denver, Colorado

Hospice del Valle. Contact: Lois Booth RN, (719) 589-9019. Alamosa, Colorado

String of Pearls, Denver, Colorado

CONNECTICUT

Holding Hands, Holding Hearts, Regional Hospice and Homecare of Western Connecticut. Contact: Perinatal hospice coordinator Chris Mastropietro RN, (203) 702-7400. Danbury, Connecticut

FLORIDA

Community PedsCare, pediatric and perinatal palliative and hospice care, a program of Community Hospice of Northeast Florida in collaboration with Wolfson Children's Hospital, Nemours Children's Clinic and the University of Florida. Contact: Director Terry Eason, (904) 407-6302, Jacksonville, Florida

Perinatal Comfort Care. Contact: Kathy DeSanto RN, (813) 931-1804 ext. 211. Tampa, Florida

Perinatal Hospice and Palliative Care at The Hospice of the Florida Suncoast. Contact: Julie Douglass, (727) 523-2425. Clearwater, Florida

GEORGIA

Hospice Atlanta Perinatal Palliative Care Program, (404) 869-3000. Atlanta, Georgia

Hospice of Northeast Georgia Medical Center perinatal program, (770) 533-8888. Gainesville, Georgia

Northside Hospital Perinatal Loss Office, Perinatal Palliative Care, Atlanta, Georgia

Sound Journeys Perinatal Hospice. Columbus, Georgia

IDAHO

St. Luke's Health System, labor and delivery unit. Contact: Jennifer Jonely RN, (208) 381-2651. Boise, Idaho

ILLINOIS

Advocate Lutheran General Hospital, Women's & Children's Services palliative and bereavement prorgrams. Contact: Palliative care coordinator Kathie Kobler MS RN, (847) 723-7911. Park Ridge, Illinois

BJC Hospice Perinatal Program, Alton, Illinois

The Haven Network for Perinatal Death and Bereavement, (Christian-based support), Rockford, Illinois

Rush University Medical Center Fetal & Neonatal Medicine Program. Contact: Maria Reyes RNC MSN, (312) 942-7874. Chicago, Illinois

Karla Polaschek MD, Medical Arts Ltd., (309) 779-4285. Moline, Illinois (See also Women's Choice Center, Bettendorf, Iowa)

INDIANA

Code Noah perinatal hospice, Community Health Network, Indianapolis, Indiana

Pathways perinatal loss/bereavement programs, Riley Hospital for Children Perinatal-Fetal Center, Indiana University (IU) Health, (317) 962-8135, Indianapolis, Indiana

The Center for Perinatal Loss perinatal hospice services, St. Vincent Women's Hospital, Indianapolis, Indiana

IOWA

Perinatal Hospice of Iowa, a multidisciplinary team approach at Mercy Medical Center. Contact: Bereavement and perinatal hospice coordinator Ann Valdez, Mercy Birthing Center, (515) 358-3030. Des Moines, Iowa

Women's Choice Center. Contact: Medical director Karla Polaschek MD. Bettendorf, Iowa (See also listing in Moline, Illinois)

KANSAS

Choices Medical Clinic, (316) 687-2792. Wichita, Kansas

See also Kansas City Hospice and Palliative Care Carousel Program prenatal services, Kansas City, Missouri

KENTUCKY

Bridges of Love, Central Baptist Hospital Perinatal Palliative Care Program. Contact: Perinatal Bereavement Coordinator Deborah Mueller RN BSN, (859) 260-6904. Lexington, Kentucky

LOUISIANA

Perinatal Palliative Care Hospice Program, Hospice of Baton Rouge, (225) 767-4673. Baton Rouge, Louisiana

MARYLAND

Dr. Bob's Place, a comprehensive pediatric palliative care and hospice program that also offers prenatal support. Contact: Neonatal nurse practitioner Jenny Dukes MSN CRNP, (410) 523-1414. Baltimore, Maryland

Gilchrist Kids perinatal hospice and bereavement counseling. Contact: Program manager Brenda Blunt MSN, RN, CCRN, RNC, (443) 849-8200. Hunt Valley, Maryland

Hospice of the Chesapeake perinatal support program. Contact: Sarah Montgomery LCSW-C, The Life Center, (410) 987-2129. Annapolis and Landover, Maryland

Never Alone perinatal hospice program, Holy Cross Hospital. Contact: Perinatal services coordinator Bethany Fox, (301) 754-7672. Silver Spring, Maryland

Rising Hope Perinatal Hospice, Howard County General Hospital (a member of Johns Hopkins Medicine). Contact: Mary Peroutka RN, (410) 884-4709. Columbia, Maryland

MASSACHUSETTS

Baystate VNA and Hospice perinatal support, provided through the Pediatric Palliative Care Network. Springfield, Massachusetts

Brigham and Women's Hospital Circle Program perinatal palliative care. Contact: Neonatologist Jennifer Cohen MD MMSc, (617) 732-8405. Boston, Massachusetts

Cranberry Hospice Fragile Footprints Pediatric Palliative Care. Contact: Administrator Deborah Dolaway, LICSW, (508) 746-0215. Plymouth, Massachusetts

Estrella's Program perinatal hospice, PediPathways, Inc. pediatric hospice and palliative care agency serving the greater Boston area. Contact: Social services manager Elissa Bosley LCSW, (617) 774-1351. North Quincy, Massachusetts

Hospice of the North Shore. Contact: Maureen Forbes MS CCLS, (978) 750-9335. Danvers, Massachusetts

Visiting Nurse Association & Hospice of Northern Berkshire. Contact: Janet McClelland, (413) 664-4536. North Adams, Massachusetts

Home Health VNA/Merrimack Valley Hospice, (800) 475-8335 or (978) 552-4122. Lawrence, Massachusetts

MICHIGAN

Angela Hospice Prenatal Program, Livonia, Michigan

Henry Ford Kaleidoscope Kids Hospice, Detroit, Michigan

Hospice of Michigan Perinatal and Pediatric Early Care Program. Contact Pediatric Programs Director Mary Spicketts RN, BSN, CHPN, (800) 642-4021. Grand Rapids, Michigan

Perinatal Hospice of Washtenaw. Contact: director Janet Holtz, (734)395-0400. Ann Arbor, Michigan

MINNESOTA

Abbott Northwestern Hospital, Birth Center Case Management Specialists, (612) 863-7585. Minneapolis, Minnesota

Birth Center, United Hospital. Birth planning in special situations (pdf). Contact: Annette Klein RN, (651) 241-6206. St. Paul, Minnesota

Deeya (a Sanskrit word meaning "a small light") perinatal hospice, a joint program of Children's Hospitals and Clinics in Minneapolis and St. Paul, Abbott Northwestern Hospital in Minneapolis, and United Hospital in St. Paul, Minnesota

Lakewood Health System Perinatal Hospice, (218) 894-8080 or (800) 525-1033. Staples, Minnesota

MISSOURI

Alexandra's House, Kansas City, Missouri

BJC Hospice Perinatal Program in St. Louis, Sullivan, and Farmington, Missouri. See their video on YouTube

1st Breath perinatal hospice support. Kansas City, Missouri

FOOTPRINTS, Cardinal Glennon Children's Medical Center, St. Louis, Missouri

Kansas City Hospice and Palliative Care Carousel Program prenatal services, Kansas City, Missouri

Wings perinatal hospice program, Children's Hospital, St. Louis, Missouri

MONTANA

Perinatal Palliative Care, Billings Clinic. Contact: Diane Arkava LCSW, (406) 247-6344. Billings, Montana

NEBRASKA

Perinatal Comfort Care Program, Methodist Women's Hospital. Contact: perinatal comfort care liaison Nina Mohr BSN RN (402) 354-3488, or clinical nurse educator Mary Killpack MSN RN, (402) 354-5634. Omaha, Nebraska

Saint Elizabeth Regional Medical Center EMBRACE Program (Every Moment Brief, Remembered Always, Cherished Eternally). Contact: EMBRACE coordinator, (402) 219-7065. Lincoln, Nebraska

NEW JERSEY

Circle of Life Children's Center. Contact: Director of Program Services Sheila Walsh APRN BC, (973) 972-1743. Newark, New Jersey

Valley Health System Butterflies Program. Contact: Coordinator Mary Ann West RN MSN CHPN, (201) 291-6335. Paramus, New Jersey

NEW YORK

A TIME, a Jewish support organization for those experiencing pregnancy loss and infertility. Contact: Malkie Klaristenfeld, director of services for pregnancy loss, (718) 686-8912. New York, New York

Caring Hearts Perinatal Program, Hospice Buffalo. Contact: Kelley Clem RN, (716) 686-8173 or (716) 686-8006. Buffalo, New York

CHOICES Pediatric Palliative Care Program, SUNY Upstate Medical University. Contact: Irene Cherrick MD, (315) 243-7826. Syracuse, New York

Circle of Hope Perinatal Bereavement Program, Hospice Care in Westchester and Putnam. Contact: Maribel Nazario, (914) 666-4228, ext. 336. Tarrytown, New York

Footprints on the Heart, Sisters of Charity Hospital. Contact: Nurse coordinator Fran Kane, (716) 862-1678. Buffalo, New York

Hospice Care Network, Contact: Mary Gravina CSW, director of bereavement, (631) 666-6873 x203. Long Island, New York

Maggie Rose Perinatal Bereavement Program, Bereavement Center of Westchester. Contact: Patty Donovan-Duff, (914) 961-2818, ext. 305. Tuckahoe, New York

Neonatologist Elvira Parravicini MD, New York-Presbyterian/Columbia University Medical Center. New York, New York

NORTH CAROLINA

Be Not Afraid Ministry of Charlotte, a network of parents and professionals. Contact: Sandy Buck, (704) 948-4587 or Tracy Winsor, (704) 543-4780, or by e-mail. Charlotte, North Carolina

Perinatal ComfortCare of North Carolina, Charlotte, providing support services guided by OB nurses experienced in perinatal bereavement. Contact: Program director Sherry Watson RNC, (980) 875-1441 or CEO and founder Tammy Tate, (864) 419-4519.

Kids Path Perinatal Hospice Services, Hospice and Palliative Care of Greensboro, North Carolina

University of North Carolina Center for Maternal and Fetal Health Perinatal Hospice, Chapel Hill, North Carolina

NORTH DAKOTA

Caring Hearts Perinatal Program, Essentia Health. Fargo, North Dakota

OHIO

Cincinnati Children's Hospital Medical Center Perinatal Hospice, Cincinnati, Ohio

Cleveland Clinic Fetal Care Center. Contact: Donna Patno CNM DNP, (866) 864-0430. Cleveland, Ohio

Hospice of the Western Reserve Perinatal Care Program, Cleveland, Ohio

Journey of Hope Perinatal Hospice, Miami Valley Women's Center. Contact: Nancy Jensen RN, (937) 298-9998, Dayton, Ohio

Maternal-Child/Pediatric Palliative Care (MACPAC) at Mercy Children's Hospital and Mercy St. Vincent. Contact: Angie Westenkirchner RN, maternal-fetal medicine high-risk patient navigator, (419) 251-8065. Toledo, Ohio

Nationwide Children's Hospital Homecare perinatal hospice care. Columbus, Ohio

Perinatal palliative care, The Toledo Hospital/Toledo Children's Hospital, ProMedica Health System. Contact: social worker Kim Folk-Axe, (419) 291-5421, or Chaplain Julie Beitelschees, (419) 291-3656. Toledo, Ohio

PENNSYLVANIA

Center for Fetal Diagnosis and Treatment Perinatal Palliative Care Initiative, Children's Hospital of Philadelphia

Lancaster General Women and Babies Hospital. Contact: Staff Chaplain Carolanne B. Hauck, 717-544-3418.

SOUTH CAROLINA

Perinatal ComfortCare of South Carolina, Greenville, providing support services guided by OB nurses experienced in perinatal bereavement. Contact: CEO and founder Tammy Tate, (864) 419-4519. Greenville, South Carolina

Lowcountry Perinatal Support, North Charleston, South Carolina

SOUTH DAKOTA

Avera McKennan Palliative Care Service, Avera McKennan Hospital. Contact: Medical director Joann Bennett DO FACOI, Nancy Terveen NP (605) 322-8993; Michele Snyders MSW, Anna Perry MSW, (605) 322-8273. Sioux Falls, South Dakota

Perinatal palliative care program, Sanford Children's Hospital. Contact: Larry Fenton MD or Pam Koepsell RN, (605) 312-1062. Sioux Falls, South Dakota

TENNESSEE

Alive Hospice Monarchs perinatal program, Nashville, Tennessee

Hospice of Chattanooga perinatal program, Chattanooga, Tennessee

TEXAS

Cook Children's Medical Center. Contact: NICU director Barbara Greer, palliative care medical director Todd Pearson MD, or neonatologist and palliative care specialist Terri Weinman MD, (682) 885-4285. Fort Worth, Texas

Texas Fetal Center, University of Texas Health Science Center, Children's Memorial Hermann Hospital. Contact: Karen Moise RN, Fetal Center Clinical Coordinator, (832) 325-7288, or Kim Cole RNC NNP-BC or Kristie Cullum RN BSN CHPN, (713) 704-0495. Houston, Texas

West Texas Maternal Fetal Medicine Center. Contact: Jamie Chase MS CGC. Odessa, Texas

UTAH

Angel Watch, Intermountain Health Care. Contact: Carolyn Kasteler RN, (801) 698-4486. Salt Lake City, Utah

Rainbow Kids Palliative Care Program, Primary Children's Medical Center/University of Utah. Contact: Nurse coordinator Beth Nordfors RN, (801) 662-3770. Salt Lake City, Utah

VIRGINIA

Family Birth Place at Mary Washington Hospital. Contact: Perinatal bereavement coordinator Tammy Ruiz RN, (540) 741-3268. Fredericksburg, Virginia

Perinatal Concerns Program, Inova Fairfax Hospital. Contact: Kelly Gallo RN, (703) 776-6371. Falls Church, Virginia

Tepeyac Family Center Kristin Anderson Perinatal Hospice Program, (703) 273-9440, Fairfax, Virginia

WASHINGTON

Lavender Tree, Care Net of Pierce County, (253) 770-8697 or e-mail. Puyallup, Washington

Sacred Heart Women's Health Center's Forget-Me-Not program, Spokane, Washington

Stepping Stones Perinatal Program, Providence Health System's Hospice of Seattle, Washington

WEST VIRGINIA

Byron C. Calhoun MD FACOG FACS MBA, professor and vice chair, Maternal-Fetal Medicine Division, West Virginia University-Charleston, (304) 388-1599. Charleston, West Virginia

WISCONSIN

Children's Hospital of Wisconsin Fetal Concerns Program palliative care, Milwaukee, Wisconsin

Gundersen Lutheran Palliative Care. Contact: Bereavement specialist Jill Wilke BSN RN (608) 775-3796 or (800) 362-9567 ext. 53796. La Crosse, Wisconsin

Perinatal CARE Program, Affinity Health System. Contact: Coordinator Thea Johnson MS, (920)-831-1284. Appleton, Wisconsin

International

CANADA

Pediatric Palliative Care Program, Child Health Program, Capital Health. Contact: (780) 407-7210 (physician) or (780) 407-7652 (nurse coordinator), or e-mail Dawn Davies MD or Tara Wren. Edmonton, Alberta

Pediatric Palliative and Bereavement Care Service, University of Toronto Hospital for Sick Children. Contact: Palliative care and bereavement coordinator Lori Ives-Baine RN, (416) 813-6782. Toronto, Ontario

Canuck Place Children’s Hospice offers comprehensive pediatric palliative care and hospice support, including perinatal. E-mail or phone: (604) 731-4847. Vancouver, British Columbia

Roger's House, The Children's Hospital of Eastern Ontario. Ottawa, Ontario

ITALY

La Quercia Millenaria, Rome. See also the books Aspettando Gabriel by Amy Kuebelbeck; Il figlio terminale by Dr. Giuseppe Noia and Sabrina Pietrangeli Paluzzi;, and La terapia dell’accoglienza by Dr. Giuseppe Noia, Sabrina Pietrangeli Paluzzi, Carlo Casini, Dr. Carlo Bellieni, Silvestro Paluzzi, Dr. Mario Castorina, Carlo Paluzzi, and Massimo Losito.

FRANCE

Soins Palliatifs en Maternité (Association SPAMA). See also the book Un enfant pour l'éternité by Isabelle de Mézerac, also available in Spanish and Portuguese.

NEW ZEALAND

SANDS (formerly Stillbirth and Neonatal Death Support), Wanganui

NICARAGUA

Centro de Coordinación Para El Acompañimiento de Madres con un Hijo/a Terminal, Associación de Médicos Catolicos, Humanae Vitae. Contact: Dr. Walter Zamora Palma, Dr. Rafael Diaz Salazar, Dr. Juan Herrera Salazar, tel. 2270 3359, 2278 1169. Managua, Nicaragua

POLAND

Warsaw Hospice for Children and Perinatal Ultrasound Clinic, Warsaw

UNITED KINGDOM

The Rosie Hospital, Addenbrooke's Hospital, Cambridge University Hospitals NHS Foundation Trust, Cambridge, England

The Maypole Project offers emotional psychosocial support, including prenatal support, integrated with children's hospices and children's hospitals in southeast London and Kent to ensure a holistic package of care.

If your organization provides formal or informal perinatal hospice support
and you would like to be added to this list, please contact us.