The Special Challenges of Parenting Twins & More
Loss, Prematurity and Special Needs
Elizabeth A. Pector, M.D.
|This page lists organizations, print & website resources that may be helpful for parents facing the challenges of raising multiples, working through loss of one or more multiples, or raising one or more premature or special needs child(ren). Recommendations for pamphlets, articles, grief information and book lists from a variety of sources are listed here. Others are available upon request. I am grateful to the many people who have brought these fine resources to my attention, and am always happy to add more. As always, I cannot vouch for the quality, appropriateness or availability of resources from any of the sites or organizations listed here. They are provided for parents who want to embark on a search for support or information but are having trouble finding appropriate help.
In Illinois, a good source of support for parents of multiples is the Illinois Mothers of Twins Clubs. For loss support in the Chicago area, I help coordinate Bramble, a local support network for parents who are raising surviving multiples. For details on the in-person or e-mail network (limited to Chicagoland parents), please e-mail me at firstname.lastname@example.org.
In addition to compiling the resources on this page, I have written many articles for parents and professionals and given talks on multiple birth, prematurity, NICU experiences and bereavement. My most comprehensive article for parents, Multiple Birth Loss, was first published at The Preemie Place. Please check my articles web page for the following articles:
Raising special needs multiples
Adolescence: multiple madness? (For parents raising teen multiples)
Roadmap for grief after loss of a multiple-birth child (one or more)
Articles from Twinsworld on parenting a twinless child and on loss of both twins.
Book list for children & teens on special needs and bereavement in twins (mainly fiction with these themes).
Bereavement and special needs: How mothers of multiples clubs can help--copy of handout from breakout session, July, 1999 annual convention of the National Mothers of Twins Clubs.
Special Babies, Bereavement and Burnout: Tips for parents and professionals facing perinatal challenges. CEU presentation for nurses given at Edward Hospital in Naperville, IL, January, 2000.
Mourning Multiplied: presentation from 12th National Perinatal Bereavement Conference, Cincinnati, OH Sept. 23, 2000.
March of Dimes presentation on multiple birth loss, 2005
NAPSW presentation on multiple birth loss, 2006
Poems at my poetry page: Bittersweet Birth, Footprints, Twin Math, Cosmic Reflections, Shadow Dancer, Cemetery Birthday, Seeds.
The Female Patient journal (www.femalepatient.com) published a 2-part article I coauthored with Dr. Michelle Smith-Levitin on Bereavement in Multiple Birth. Click for: Part 1 Part 2 They are very useful for professionals who are trying to meet the needs of acutely bereaved parents. Another article with similar focus is available in Seminars in Neonatology.
The Journal of Perinatology has published two of my articles, that summarize a survey of 70 bereaved parents of multiples The January 2004 article discusses decision-making and desired experiences at the end of life. The November 2004 article discusses parent preferences for psychological and grief support, disposition for deceased children, and discharge planning, plus their views of interactions with professionals and any challenges they had attaching to surviving children. Please contact me at email@example.com
for copies of these or other published articles.
I would appreciate learning of updates, corrections, and additional resources that are helpful to parents facing these challenges. My sympathy and prayers go out to all families who cope with the special and often overwhelming situations that accompany a multiple birth.
Elizabeth A. Pector, M.D.
family physician and mom to David and twins Jared (33 week preemie special needs survivor) and Bryan (deceased from cord accident the day before delivery in February 1997)
SUPPORT FOR COMPLICATED PREGNANCIES
Sidelines National Support Network
P.O. Box 1808
Laguna Beach, CA 92652
Web site: http://www.sidelines.org
see also St. Joseph's Women's Hospital next section::
COMPLICATED MULTIPLE PREGNANCY TREATMENT & SUPPORT
Ruben Quintero, M.D.
Mary Allen, R.N., C.N.O.R.
Fetal Therapy Department
St. Joseph's Women's Hospital
3030 W. MLK Boulevard.
Tampa, FL 33607
888-FETAL77 toll free
Web site: www.fetalmd.com (website not working 4/06)
International Institute for the Treatment of Twin to Twin Transfusion Syndrome (Dr. Julian DeLia)
Monoamniotic Monochorionic Support Group
Web site: http://www.monoamniotic.org
Twin to Twin Transfusion Syndrome Foundation
411 Longbeach Parkway
Bay Village, Ohio 44140
Voice: (440) 899-TTTS or 1-800-815-9211
Web site: http://www.tttsfoundation.com/
Twin Hope, Inc.
2592 West 14th Street
Cleveland, Ohio 44113
(216) 228-TTTS (8887)
Web site: http://www.twinhope.org
Australian Twin to Twin Transfusion Syndrome Support Group
Australian Twin to Twin Transfusion Syndrome Awareness
UK TTTS Syndrome Association
Conjoined Twins International
Will L. Degeraty
P.O. Box 10895
Prescott, AZ 86304
Web site: www.conjoinedtwinsint.com
SUPPORT AND INFORMATION FOR PARENTS OF MULTIPLES
National Organization of Mothers of Twins Clubs, Inc.
Web site: http://www.nomotc.org
The Triplet Connection
P.O. Box 429
Spring City, UT 84662
Web site: http://www.tripletconnection.org
Janet Bleyl, President
Mothers of Supertwins (MOST)
P.O. Box 306
East Islip, NY 11717
Web site: http://www.mostonline.org/
Maureen Boyle, Founder
Multiples Births Canada (formerly POMBA, also includes former TQQ Association)
P.O. Box 432
Wasaga Beach, Ontario
Canada L9Z 1A4
Web site: http://www.multiplebirthscanada.org
E-Mail for high-order network: firstname.lastname@example.org
Marvelous Multiples--INCLUDES SPANISH INFORMATION!
P.O. Box 381164
Birmingham, AL 35238
Web site: http://ww.marvelousmultiples.com
Support for fathers of high-order multiples in U.S. and other countries
P.O. Box 10066
Berkeley, CA 94709
510-524-0863 (message machine)
Web site: http://twinservices.org
The Twins Foundation
PO Box 6043
Providence, RI 02940-6043
Web site: http://www.twinsfoundation.com
Multiple Births Foundation
Level 4 Hammersmith House
Queen Charlotte's & Chelsea Hospital
London, England W12 0HS
Phone (44) 020 383 3519
FAX (44) 020 1383 3041
Web site: www.multiplebirths.org.uk/
TAMBA (Twins and Multiple Births Foundation)
Australian Multiple Birth Association
P.O. Box 105
Coogee NSW 2034
Web site: http://www.amba.org.au
New Zealand Multiple Births Assoc.
PRENATAL EDUCATION, EDUCATION AND SCHOOL ISSUES
INFORMATION ABOUT BEREAVEMENT INCLUDED AT TWINSANDMULTIPLES.ORG AND MULTIPLEBIRTHSFAMILIES.COM
Education issues for multiples including special needs
Input by Dr. David Hay and Pat Preedy, longstanding
researchers of and advocates for sound educational
strategies for multiples.
Multiple Birth Resources LLC (Expectingmultiples.com)
Prenatal education videos, articles and classes for parents expecting multiples--developed by a mother of 2 sets of twins in Colorado.
Multiple Births Families.com Lynda Haddon's site on education and bereavement.
ORGANIZACIONES EN ESPANOL
Multifamilias.com Organizacion de soporte en Argentina
Asociacion de padres de parto multiple en Castilla la Mancha
Asociacion catalana de padrs con hijos de un parto multiple
gemelos.org en Mexico
Marvelous Multiples--informacion en espanol
Jumeaux-a-plus--informacion en espanol sobre una organizacion francesca
Cyberpadres--enlazca Vd. a otros sitios de Web para padres de gemelos, mellizos, trillizos y mas de multiple
BIRTH AND CHILDHOOD MULTIPLE BIRTH LOSS
Center for Loss in Multiple Birth, Inc. (CLIMB, Inc.)
P.O. Box 91377
Anchorage AK 99509
Web site: www.climb-support.org
Founder: Jean Kollantai
Loss of Multiples Support Network
Lynda Haddon, Chair
Multiple Births Canada (formerly POMBA)
P.O. Box 432
Wasaga Beach, Ontario L0L 2P0
866-228-8824 (toll free phone)
Web site: http://www.multiplebirthscanada.org
Worldwide Bereavement support resources compiled by Lynda Haddon
More bereavement addresses from Lynda Haddon
Note: my list may be more up-to-date than Lynda's. If there are differences, refer to the address on my site.
Multiple Birth Association--Bereavement Support Group (M-BABS)
P.O. Box 105
Coogee NSW 2034
(03) 9527 7144 phone
(03) 9527 2537 FAX
Web site: www.amba.org.au/bereavement
TWIN/MULTIPLE SIBLING LOSS AT ANY TIME
Twinless Twins International
P.O. Box 980481
Ypsilanti, MI 48198-0481
1-888-205-8962 toll free phone
Web site: www.twinlesstwins.org
Founder: Raymond Brandt, Ph.D., Ed.D. (deceased June of 2001.)
The organization addresses the needs of adolescent and adult bereaved twins/multiples, and families of bereaved multiples.
GENERAL PREGNANCY, INFANT & CHILD LOSS
SHARE Pregnancy & Infant Loss Support, Inc.
Catherine A. Lammert, R.N.
National SHARE Office
St. Joseph Health Center
300 First Capitol Drive
St. Charles, MO 63301-2893
1-800-821-6819 or (636) 947-6164
Web site: http://www.nationalshareoffice.com
Gunderson Lutheran Medical Foundation
1900 South Avenue, ALEX
LaCrosse, WI 54601
Web site: http://www.bereavementservices.org
The Compassionate Friends
P.O. Box 3696
Oak Brook, IL 60522-3696
Web site: http://www.compassionatefriends.org/
2116 NE 18th Ave.
Portland, OR 97212
Web site: www.tearsoup.com
1531 N. Saddle Creek Road
Omaha, NE 68104
Web site: www.centering.org
RESOLVE National Infertility Association
Somerville, MA 02114
Web site: www.resolve.org
National Organization of Parents of Murdered Children
100 East Eighth Street, Suite B-41
Cincinnati, OH 45202
(888) 818-POMC Toll Free, or (513) 721-5683 phone
(513) 345-4489 FAX
Web site: www.pomc.org/index.html
Addresses to remove name from infant product mailing lists:
Mail Preference Service
Direct Marketing Association
P.O. Box 9008
Farmingdale, NY 11735-9008
Direct Marketing Association
Mail Reference Service
6 East 43rd Street
New York, NY 10017
Gerber Baby Products
445 State Street
Fremont, MI 49413
BOOKS & PAMPHLETS
PROFESSIONALLY ORIENTED on General Aspects of Multiple Birth or bereavement:
Twin and Triplet Psychology, Audrey C.Sandbank, Routledge, London, 1999. Aimed at professionals but also of interest to parents, discusses parent reactions to the diagnosis of multiples and raising multiples, intrauterine behavior, relationships between twins and triplets from pre-birth through adulthood, bereavement, special needs multiples, adolescence and more.
Multiple Pregnancy: Epidemiology, Gestation & Perinatal Outcome, Keith, Louis G., Emile Papiernik, Donald M. Keith and Barbara Luke, Parthenon, 1995. 2nd edition, completely revised by Isaac Blickstein and Louis Keith, was published March, 2005..
Guidelines for Professionals: Multiple Pregnancy. Elizabeth Bryan M.D., Jane Denton RGN RM, Faith Hallett. Multiple Births Foundation, England. Excellent pamphlet with overview of medical and psychosocial aspects of multiple pregnancy and delivery, includes discussion of bereavement, higher order multiples, attention to older siblings of multiples.
Chapter 16 Multifetal Pregnancies: Epidemiology, Clinical Characteristics, and Management, in: Medicine Of The Fetus And Mother. Reece, E Albert and John C. Hobbins, eds. Lippincott-Raven Publishers, 1998, Up-to-date review of multiple pregnancy from conception to delivery, prevention & management of complications. Update in process 2005.
The Twin Care Handout Collection, from Twin Services, available for reproduction by health and social service programs. The collection of 38 handouts covers key multiple birth issues from prevention of preterm birth to breast feeding to school placement. Selected titles may be viewed and an order form may be downloaded at http://twinservices.org.
Guidelines for Professionals: Bereavement. Elizabeth Bryan, M.D. and Faith Hallett. Multiple Births Foundation, England. Excellent overview of multiple birth bereavement from prenatal through childhood, with some discussion of approach to the surviving twin.
Loss During Pregnancy or in the Newborn Period, edited by James R. Woods, Jr. M.D. and Jenifer Esposito Woods, MBA, Jannetti Publications, 1997. Insightful & complete review for medical & counseling professionals on all aspects of pregnancy & infant loss.
When a baby dies: a handbook for healing and helping, Rana K. Limbo and Sara Rich Wheeler. Bereavement Services, LaCrosse WI, 1998. Sensitive handbook details management of any type of fetal or perinatal loss. Chapter 7 covers multiple pregnancy loss, and other chapters cover physician, funeral director, clergy roles.
After Loss: Parenting in the next pregnancy, Joanne O'Leary, Lynnda Parker, Clare Thorwick, Abbott Northwestern Hospital, Minneapolis, MN, 1998. Discusses theory and practical assistance for the psychological hurdles faced by parents in subsequent pregnancy. One chapter discusses loss in multifetal pregnancy and methods of helping parents through a pregnancy in which one or more children died in utero. Includes birth plans.
FOR PARENTS OR PROFESSIONALS, General Info on Multiples:
Twins, Triplets and More, Elizabeth M. Bryan, St. Martin's Press, New York, 1992. Chapters 11 and 12 deal with loss of a twin. Dr. Bryan, a British pediatrician, is well-known for her dedication to multiple-birth issues.
Raising Twins : What Parent Want to Know (And What Twins Want to Tell Them) by Eileen M. Pearlman and Jill Alison Ganon, 2000. Excellent book on raising twins from birth through adolescence, written by a psychologist who herself is a twin. Includes an excellent chapter on death of a twin in childhood.
The Art of Parenting Twins--the Unique Joys and Challenges of Rearing Twins and Other Multiples, Patricia Maxwell Malmstrom and Janet Poland, Ballantine Publishing Group, July 1999. Comprehensive guide for parents and caregivers, covers special health concerns and the mental, physical and social development of multiples from conception to adulthood. Chapter on crises sensitively addresses the difficulties of twin disability and twin loss. Includes information and strategies for finding community resources.
Entwined Lives : Twins and What They Tell Us About Human Behavior , Nancy L. Segal, E P Dutton, 1999. Fascinating research on twinning, including twin types, personality, development, behavior and relationships in twins; twins reared apart; twin loss; conjoined twins; fertility treatments; famous twins, and legal issues involving twins.
RESOLVE Multiple Gestation Information . Click here to view
LOSS-RELATED AND PREEMIE-RELATED FOCUS FOR PARENTS OR PROFESSIONALS:
Multiple Birth Bereavement Information Packet, Multiple Births Canada (see address above). Lynda Haddon has also made available many of the excellent information sheets, online at her Multiple Births Families site. The packet also includes pamphlets, resource and book lists for parents grieving loss at any time in pregnancy or childhood, and for those who wish to help them through their grief.
Loss packets for loss of one or loss of all multiples available through TTTS Foundation. Excellent advice for bereaved parents helps them understand and work through their grief. Loss packets are also available from March of Dimes, NOMOTC, the Triplet Connection and MOST, and include many resources helpful for grieving families.
The Dilemma Within A Miracle, Tal Rapaport, Psy.D., 2001. Excellent, hopeful yet realistic pamphlet of the medical and psychological aspects of multifetal pregnancy reduction. Approaches the topic through multicultural case vignettes of three couples. Recommended for parents who need to consider this procedure, or for anyone wondering about the parent's viewpoint of the procedure. Contact the author, Dr. Tal Rapaport, at 5843 Wish Ave., Encino, CA 91316, 818-708-8199, e-mail: email@example.com
Embracing Laura, Martha Wegner-Hay, 1998. Available through Centering Corporation, 1531 Saddle Creek Rd., Omaha NE 68104 402-553-1200. Pamphlet on a family's grief process after death at 15 weeks of a twin with lethal anomalies. Includes parent & sibling grief, support during pregnancy, delivery, after delivery, creating memories of lost twin.
The Special Brother, Judy Kidder, Reivers Press, San Diego, CA, 1999. Available for $3.50 plus $1 shipping and handling through: Judy Kidder, 352 Kinsey Ave., East Liverpool, OH 43920, phone 330-385-8896. Booklet for young children, from the viewpoint of a 3-year-old boy whose infant twin brother died at age 4 months after heart surgery. Photos include older brother holding the twins, twins together, parents, extended family, and a photo of surviving family members. Good for siblings at the time of loss, and may later help explain to a surviving twin. Author is grandmother of the twins.
Always my Twin, Valerie R. Samuels, illustrated by Najah Clemmons. This lavishly illustrated children's book explains the specialness of twins, the sadness everyone in the family may feel about the twin who dies, and positive, healthy ways that families may choose to remember the deceased twin. Space is provided for a surviving child to express their own feelings, construct their family tree, and indicate their special talents and interests. Available through Trafford.com
The Promised Twin, Kjirstin Youngberg. Available at http://www.allmormon.com/ShopSite/index.html. Written by a mother, member of The Church of Jesus Christ of Latter-day Saints, who lost one of her twins to SIDS. Recommended by LDS mothers who have lost a twin, and may be inspirational to others.Good account of the family's attempts to grieve and adjust to the death of a previously healthy twin, with the help of faith and friends.
Coming to Term: A Father's Story of Birth, Loss, and Survival, William H. Woodwell, Jr., Jackson, U of Mississippi Press, 2001. A poignant story of a couple's first pregnancy with twins, premature birth, early neonatal death of one twin and the long hospitalization of the survivor before homecoming. Told from the father's point of view, it chronicles facts, emotions, decisions and coping through the family's long ordeal. With death and mourning for Nina juxtaposed with worries for Josie, this book gives an honest, revealing look at one family's experienced with a mixed outcome from a multiple birth. Ultimately, the parents become deeply attached to Josie, with a profound appreciation for how very precious life is.
Parenting your Premature Baby and Child: The Emotional Journey. Deborah L. Davis and Mara Tesler-Stein, Golden, CO: Fulcrum Publishing, May 2004. An excellent, sympathetic look at the emotional aspects of parenting in NICU and beyond. This book's authors are both sensitive psychologists. One has written sensitive books about bereavement, the other is the mother of preemie twins. This collaboration on the journey of premature parenting is long-awaited and a welcome addition to the more medically-oriented books on prematurity..
A Different Kind of Mother, Christine Howser, 1stbooks.com, 2001. Excellent book discussing the deep grief and depression experienced by the author after both of her twin sons died within six days after delivery. She arrives at the conclusion that she is a "different kind of mother," but still a mother with valid memories and ongoing feelings for her children. References to other loss literature and organizations. Available as an e-book and eventually in paperback. Search on either title or author's name at 1stbooks.com.
William & Wendell: A Family Remembered, Donnali Fifield, Times Two Publishing Co., San Francisco 2000. Written by a twin whose twin sons died after premature birth in 1990. The sometimes intense yet compelling book explores grief for multiple losses (the sons' deaths followed other personal tragedies, including childhood abuse, family member's suicide, and father's death). Author criticizes traditional grief counseling that aims to help people "recover" from events that permanently change them. Well-written, insightful, honest, and fresh, this book may be particularly valuable for people who feel there is no way they can heal from profound tragedies and are looking for alternative suggestions on how to cope. Ordering information and sample chapter can be viewed at http://www.timestwopublishing.com/ww.htm.
Books by Lynne Schulz: The Diary, about going longer after a mid-trimester twin loss, and The Survivor, about parenting surviving multiples. Well-written, supportive and engaging for parents affected by either or both situations. Lynne is an Australian bereavement counselor and wrote The Diary while going longer with her daughter after the death of her son, Rhys. Information about these books and others listed on this page available at Murraylands
Having Twins, Elizabeth Noble, Houghton Mifflin Company, Boston 1991, updated 2003. Check chapters on loss, and Appendix and Special Resources on loss. Chapters discuss risks of prenatal complications and loss, psychological problems possibly attributable to survivor twin status. Support and information resources given. This comprehensive book is a valuable resource on risks of prematurity and how to stay healthy during pregnancy with multiples.
Twin Loss, Raymond Brandt, 2001. Available through Twinless Twins International. Including Dr. Brandt's observations, opinions, advice and poetry interspersed with letters and comments from bereaved twins, this book covers a broad range of loss scenarios from pre-birth through adulthood, with advice on helping the bereaved twin and family through acute and later grief.
Living Without Your Twin, Betty Jean Case, Tibbutt Publishing, 0438 SW Palatine Hill Rd., Portland, OR 97219 Phone orders: 800-621-5655 (check or money order), 800-356-9315 (Visa, MC, Discover), FAX 503-977-3689. Adult twin reactions to loss from diverse causes (including intrauterine or childhood as well as adult loss or estrangement). Updated with 50 new pages in 2001.
The Lone Twin, Joan Woodward, Free Association Books, London/NY, 1998. Surveys adult bereaved twin reactions to loss from all causes, includes some accounts of positive or neutral reactions and more psychological theory than the book by Betty Jean Case.
Damages, Barry Werth, Simon & Schuster, 1998. This sometimes disturbing book details the effects of a malpractice suit on the family, physician, hospital and lawyers involved, by following all of the participants through the 7-year process. The suit involved the stillbirth of one twin and serious neurologic damage of his identical twin; suit was on behalf of the survivor.
Parenthood Lost: Healing the Pain after Stillbirth, Miscarriage and Infant Death, Michael R. Berman, M.D., Bergin and Garvey Trade, Westport CT 2000. Includes poetry, parents' and caregivers' views, and explanations by obstetricians of common causes for pregnancy and infant loss. Link to order book.
Dreams and Dilemmas Video for professionals or parents (recommended group viewing for either situation) Cinema verite production detailing the experiences of a couple with premature twins born at the border of viability; one dies at 5 days of age, one is discharged home after a roller coaster 5 month course in NICU. Conversations with parents, caregivers, social workers, clergy, and grandparents. Study guide for professional education credit, deals with ethical issues, difficult choices, gender differences in grieving and coping, parent-professional and inter-professional communication issues, and more. Highly recommended.
Little Man An incredibly poignant , moving, award-winning documentary produced by Nicole Conn. This film tells the story of a preemie who beat all the odds after extremely early birth following a high-risk pregnancy. Nicole and her life partner, Gwen, had a daughter together already and chose a surrogate to carry an embryo for them. Explored in the film are ethical dilemmas associated with surrogacy, potential termination due to high-risk 2nd trimester complications, non-intervention choices during a stormy NICU course, quality of life issues, and the short- and long-term effects of their son Nicholas's complex medical needs on the parents' relationship, older sister, high-tech hospital-grade care at home, essential relationships with nurses and doctors in- and out of hospital. Although the parents are same-sex partners, the lessons of this film carry over to all families who struggle with prematurity and special needs children. Highly recommended for professionals in training and experienced professionals who want to know what life is truly like for their smallest surviving miracle pabies. Available at littlemanthemovie.com.
PORTRAITS OF DECEASED (OR LIVING) BABIES
Portraits by Dana
Dana is a mother of an intact set of twins who has drawn some incredibly poignant and cherished portraits for parents who have lost one or more babies. Working from photos or descriptions, she can render close likenesses and create cherished mementos. I've seen her work firsthand and know several satisfied multiple-birth bereaved parents.
BEREAVEMENT AND PREEMIE CLOTHING AND RESOURCES, INCLUDING PREMATURE OR MICRO-SIZE GOWNS, SPECIAL NEEDS SUPPLIES
www.babylinq.com Preemie clothing, distributed by a mother entrepreneur with 4 living children, 1 loss during delivery.
www.newbornsinneed.org Preemie and burial clothing
PERINATAL BEREAVEMENT MERCHANDISE: INTERNET
http://www.aplacetoremember.com: memory boxes, cards, birth/death
announcements, including cards and announcements for multiple birth losses. Resources section of this web site contains links to other sites including Perinatal Loss and Grief Resources, which offer personalized urns or albums, video and audio resources. LePetite Baby, also available via a link at this site, offers preemie clothing on-line..
http://www.newbornsinneed.org/death.html Burial layettes (gown, bonnet, afghan or blanket and as available, Fleece the Beanie Baby) provided for deceased infants including premies, may be available on short notice. The general newborns in need site provides premie clothes for living children in need as well.
www.tearsoup.com Perinatal Loss/Griefwatch. Some cards & announcements can be customized for multiple birth loss.
www.centering.org Centering Corporation offers a variety of family and professional resources for many types of perinatal loss. "Death of an Infant Twin" and "Embracing Laura" are two books available through them. (see books above.)
www.custombraceletsbylisa.com Custom Bracelets by Lisa, LLC, Littleton, CO Mother of fraternal twin boys who has suffered a loss makes name and memento bracelets in a variety of styles.
Please check also books and items available through Bereavement Services and SHARE (addresses, web site and phone noted under general perinatal loss organizations.)
EMAIL SUPPORT LISTS FOR MULTIPLE LOSS, PREEMIES, SUBSEQUENT PREGNANCY AFTER LOSS
1. ELIMBO: Loss in Multiple Birth Outreach
List Administrator: Terry Callaghan, email address: Terryc45@hotmail.com
E-mail Terry for information on the list, a personal welcome, and subscription information. List welcomes anyone with loss of one or more, both or all children from a multiple birth at any age. Web page with LIMBO info: http://www.geocities.com/Heartland/Lake/5142
To subscribe: www.groups.yahoo.com/group/eLIMBO
2. Oz-most: Australia mothers of surviving twins
3. LAMBS: Loss of All in Multiple Birth
List Administrator e-mail address: firstname.lastname@example.org
List is for parents losing all of their multiple birth babies.
To subscribe: http://lamb.listbot.com/
4. LAMBDads2 "Loss of All in Multiple Birth Dads are deserving of support too". Dads who have lost both their twins or all higher multiples are welcome to contact Jonathan at email@example.com.
5. TACL (Trying Again after Complete Loss) E-mail loop for parents trying again after loss of all multiples: contact Donna at DHKWriter@worldnet.att.net
6. Preemie-l: for any parent of preemies (includes parents with preemie singletons, surviving multiples after loss, or intact sets of premature multiples. All are welcome)
List owner: Anne Casey, firstname.lastname@example.org
Web page with preemie-l info: http://www.preemie-l.org
7. SNAPS (Special Needs and Preemie Survivors) is a CLIMB support list for parents with survivors meeting these descriptions. E-mail Terry Callaghan, email@example.com for subscribing instructions.
8. Our Kids: e-mail list for parents and caregivers of special needs children. Go to http://our-kids.org for information.
9. Parenting Surviving Multiples: discussion list for parents raising multiple birth survivors, especially those past infancy. http://www.groups.yahoo.com/group/psm
10. angeltwinmoms: another discussion list for parents of surviving multiples, sponsored by the Angel Babies Network.
For info: http://www.angels4ever.com
11. Parenting after infertility: For parents raising children after infertility, not for discussion of issues related to raising multiples.
To subscribe:PAIS-subscribe@Topica.com Please give a short intro discussing your child(ren), how they were conceived, infertility diagnosis and any other desired info, then Rachel will add you to the list.
Moderator: Rachel, E-mail firstname.lastname@example.org
12. Selective (multifetal) reduction support: groups.yahoo.com/SelectiveReductionLossSupport
13.A list for support of parents of high-order multiples with two or more survivors is available. E-mail Dr. Pector for specific information.
14. Support lists for infertility:
15. Support for TTTS (Australian List)
MULTIPLE BIRTH, LOSS SPECIFIC :
http://www.erichad.com/pom Parents of Multiples Forever: a place to remember lost multiple birth children and network with other bereaved parents.
Murraylands Twin Loss Lynne Schultz's site: story of loss of her twin daughter Megan in utero. Lynne has authored two books, "THe Survivor" and "The Diary."
http://www.twinloss.org.nz New Zealand Support network and group for parents who have had a multiple birth loss.
http://www.monoamniotic.org A growing support group for couples diagnosed with monoamniotic twin pregnancies. Includes parents who have delivered, parents who have lost one or both of their monoamniotic twins, links to professional support & information.
http://www.hannah.org/ Hannah's Prayer: Christian Discussion forums. Read their site to see if you agree to their beliefs and statement about beginning of life, etc. Not for those who have chosen selective reduction.
GENERAL MULTIPLE BIRTH:
http://multiplebirth.com Center for Study of Multiple Birth, maintained by Dr. Louis Keith. Links to other sites dealing with multiple birth. Detailed info available on request by e-mail.
http://twinservices.org offers articles about many key multiple birth topics, information and web links to multi[ple birth resources.
http://www.preemietwins.com Attractive, supportive site built by parents of preemie twins, offering useful links and information to professionals and to parents of special needs multiples.
John Robinson's twin page Both of these have a fairly comprehensive list of multiple-related links, some overlap between the two but enough individual differences to make both worth exploring. Both have some loss-related organizations listed as well.
GENERAL LOSS SPECIFIC, INCLUDING TERMINATION & INFERTILITY:
aheartbreakingchoice.com A Heartbreaking Choice: For parents who have received prenatal diagnosis of fetal anomalies or disease. List of support groups for parents facing pregnancy termination/reduction, many local post-termination support groups and general infant loss groups. Book & video suggestions. Links to National Organization for Rare Disorders & other helpful sites. .
http://www.erichad.com/wwl/ Waiting with Love: for parents continuing pregnancy after diagnosis of a serious fetal anomaly that will likely result in death. Letters from parents, sample birth plans and resources. Includes a checklist from CLIMB for expectant parents of multiples with anomalies to plan for birth and beyond.
http://www.aplacetoremember.com/greshome.html Resources section with links to sites related to prematurity, infant loss/miscarriage, infertility, men's grief, genetic diseases, continuing pregnancy after diagnosis of a condition with poor prognosis, pregnancy after loss, SIDS, infertility, and sites selling urns, albums, cards & videos.
http://www.angels4ever.com/ Angel Babies Forever Loved, a network begun by a mother who has lost both a singleton son and a twin son. Support lists available for a variety of types of loss, and links to other helpful sites.
http://www.shareatlanta.org Comprehensive site affiliated with SHARE
sidscenter.org National SIDS Resource Center
FirstCandle.org SIDS support & information
www.resolve.org Infertility support and information, access to clinic success rates & info, multiple birth risks, adoption and other parenting alternatives, childfree living.
http://www.wisc.edu/wissp/ Wisconsin Stillbirth Service Program. Useful professional information on stillbirth, including an on-line professional journal with photos of fetal demise occurring at different times before delivery, many compassionate articles on handling stillbirth.
http://www.misschildren.org Mothers in Sympathy and Support: excellent website on general perinatal loss issues, with links to other supportive sites. Excellent professional section for nurses and caregivers on sensitive handling of stillbirth or pre-viable deliveries.
http://hygeia.org/ Home page for Hygeia, a website founded by a Yale obstetrician with interest in pregnancy and neonatal loss. Professional resources, on-line professional journal regarding loss issues, parent sections, poetry. Hygeia Foundation places Internet-enabled resource centers in medically & economically underserved communities, NICUs, libraries & women's centers so families can communicate with each other in real-time, read and share stories, poetry, hope and learning.
www.handonline.org/ Helping After Neonatal Death: Support and resource information for perinatal infant loss.
http://home.att.net/~bhatcher/heaven.htm Brady's Heaven, a cyber-quilt memorializing lost children. Parents can submit their child's information to be included in the quilt.
http://www.indiana.edu/~hperf558/summer98/dev1.html Excellent curriculum guide on the grief of children and adolescents; useful for parents, counselors or other adults guiding both surviving and older siblings through the complex grief process.
PREMATURITY/NICU/SPECIAL NEEDS/BREAST MILK DONATION
March of Dimes
National Perinatal Association
http://www.neonatology.org/neo.links.parents.html Comprehensive list of links: genetic support groups, rare diseases and anomalies including trisomies, many premie pages, SIDS, stillbirth and neonatal death support, complications of prematurity
Neonatal risk calculator based on gestational age Note: the information in this calculator is based on older data. Talk with a professional before acting on this information.
http://www.kingproductions.com Tommy's CyberNursery: Highly recommended site with many links to other premie and condition-specific sites, support groups, Internet and non-Internet resources related to prematurity, loss support resources.
www.preemiemagazine.com New magazine for parents and professionals who work with preemies. Affiliated with March of Dimes.
www.yourpreemie.com Another new preemie magazine.
Exceptional Parent magazine
http://www.nichcy.org National Information Center for Children and Youth with Disabilities. Excellent list of national resources.
http://ericec.org/ ERIC, National Clearinghouse on Disabilities and Gifted Education, home page. Especially check out FAQs and a comprehensive list of links to other sites associated with disabilities and special education. ERIC is a federally funded clearinghouse for information on special ed and gifted ed, and has a large database of professional information and materials.
http://www.comeunity.com/ Resources & support for prematurity, special needs and adoption. Check out the "Children's Special Needs Lists of Lists," which gives information on E-mail support lists for many types of disorders and disabilities.
about.com on siblings of special needs kids. This, and other special needs sites from about.com, offer many practical articles to help families cope.
http://www.rarediseases.org Database of information and support resources for many rare diseases.
http://www.trisomy.org SOFT: Support Organization for Trisomy 18, 13 and related disorders .
www.fivepminus.orgCri du Chat syndrome support
http://www.bissells.com Twin Enterprises. The Bissells, both registered nurses, had preemie twins at 26 weeks. Their story, links to other useful sites and support networks.
http://specialchildren.about.com/index.htm?COB+home&PID+2750 About.com home page for special needs, mainly noteworthy for Netlinks to other organizations..
http://www.fathersnetwork.org National Fathers' Network, advocates for, and provides resources and support to, men whose children have special health care needs.
Dr. Michael T. Hynan's Home Page Psychologist and Father of a preemie,
www.comeunity.com/premature/ New home for preemie-child and lots of links & research.
www.preemieparents.com A reading room for preemie parents parents.
www.emory.edu/PEDS/NEONATOLOGY/DCP on-line resource center for developmental issues.
pages.prodigy.net/thealexisfoundation/THEALEXIS1.html The Alexis Foundation for Premature Infants.
www.premature-infant.com hosted by a NICU nurse and preemie mom. Includes an article about helping parents survive the emotional rollercoaster ride in the NICU. NICU.
http://www.hmbana.org/ Human Milk Banking Association of North America, Inc. Includes donor criteria and locations of milk banks in North America. Donation of excess milk after the death of a child , may be meaningful for some mothe
|In honor & memory of all parents' little angels; image copyright kitty beach|
|Spectrum Family Medicine|
|Selected Multiple & Preemie Links|
|National Organization of Mothers of Twins Clubs|
|About.com on parenting multiples|
|Multiple Births Canada|
|Amy Tracy's Preemie website|
|A Silent Sorrow|
|CLIMB (Center for Loss in Multiple Birth)|
|Multiple Angels Network|
|Murraylands Lutheran SISS (Australia)|
|Dr. Pector's poems|
|Dr. Pector's articles|
|For further information, contact:|
|Name:||Elizabeth A. Pector, M.D.|
|Visit my virtual chapel:
Lost & Found
for some words of comfort
|Visits to this page since May 2002:|