Declaration of Rights and Statement of Needs
of Twins and Higher Order Multiples Adopted by the
Council of Multiple Birth Organizations (COMBO) of the International
Society for Twin Studies (ISTS)
May 1995 Introduction: The mission
of the Council of Multiple Birth Organizations (COMBO) of the
International Society for Twin Studies is to promote awareness
of the special needs of multiple birth infants, children, and
adults. The multi-national membership of COMBO has developed
this Declaration of Rights and Statement of Needs of Twins and
Higher Order Multiples as benchmarks by which to evaluate and
stimulate the development of resources to meet their special
needs.
Declaration of Rights WHEREAS myths and superstitions
about the origins of multiples have resulted in the culturally
sanctioned banishment and/or infanticide of multiples in some
countries:
I. Multiples and their families
have a right to full protection, under the law, and freedom from
discrimination of any kind.
WHEREAS the conception
and care of multiples increase the health and psychosocial risks
of their families, and whereas genetic factors, fertility drugs,
and in vitro fertilization techniques are known to promote multifetal
pregnancies:
II. Couples planning their
families and/or seeking infertility treatment have a right to
information and education about factors which influence the conception
of multiples, the associated pregnancy risks
and treatments, and facts regarding parenting multiples.
WHEREAS the zygosity of
same sex multiples cannot be reliably determined by their appearances;
and whereas 1) the heritability of dizygotic (two-egg) twinning
increases the rate of conception of multiples; 2) the similar
biology and inheritance of monozygotic (one-egg) multiples profoundly
affect similarities in their development; 3) monozygotic multiples
are blood and organ donors of choice for their co-multiples;
and 4) the availability of the placenta and optimal conditions
for determining zygosity are present at birth:
III.
A. Parents
have a right to expect accurate recording of placentation and
the diagnosis of the zygosity of the zygosity of same sex multiples
at birth.
B. Older, same sex multiples of undetermined
zygosity have a right to testing to ascertain their zygosity
WHEREAS during World War
II twins were incarcerated in Nazi concentration camps and submitted
by force to experiments which caused disease or death:
IV. Any research incorporating
multiples must be subordinated to the informed consent of the
multiples and/or their parents and must comply with international
codes of ethics governing human
experimentation.
WHEREAS inadequate documentation,
ignorance, and misconceptions regarding multiples and multiple
birth increase the risk of misdiagnosis and/or inappropriate
treatment of
multiples:
V.
A. Multiple
births and deaths must be accurately recorded.
B. Parents and multiples have a right to care
by professionals who are knowledgeable regarding the management
of multiple gestation and/or the lifelong special needs of multiples.
WHEREAS the bond between
co-multiples is a vital aspect of their normal development:
VI. Co-multiples have the
right to be placed together in foster care, adoptive families,
and custody agreements.
Statement of
Needs
Summary: Twins, and higher
order multiples have unique conception, gestation and birth
processes; health risks; impacts on the family system; developmental
environments; and individuation processes. Therefore, in order
to insure their optimal development, multiples and their families
need access to health care, social services, and education which
respect and address their differences from single born children.
WHEREAS twins and higher
order multiple births are at high risk of low birth weight (<2500
grams), and very low birth weight (< 1500 grams), disability,
and infant death:
I. Women who are expecting
multiples have a need for:
A. education
regarding the prevention and symptoms of pre-term labor,
B. prenatal
resources and care designed to avert the pre-term birth of multiples,
including:
1. diagnosis
of a multiple pregnancy, ideally by the fifth month, which is
communicated tactfully, with respect for the privacy of the parents;
2. nutrition counselling and dietary resources
to support a weight gain of 18-27 kilos (40-60 pounds)
3. obstetrical care which follows protocols
of best practice for multiple birth;
and when the health of
the mother or family circumstances warrant:
4. extended work leave;
5. bed rest support; and
6. child care for siblings.
(See References, Section
I).
WHEREAS breastfeeding provides
optimal nutrition and nurture for
pre-term and full-term multiples; and whereas the process of
breastfeeding and/or bottle feeding of multiples is complex and
demanding:
I. Families expecting and
rearing multiples need the following:
A. education regarding the
nutritional, psychological, and financial
benefits of breastfeeding for pre-term and full-term infants;
B. encouragement and coaching in breastfeeding techniques;
C. education and coached practice in simultaneous bottle feeding
of co-multiples; and,
D. adequate resources, support systems, and family work leave
to facilitate the breastfeeding and/or bottle feeding process.
(See References, Section
II).
WHEREAS 60% of multiples
are born before 37 weeks gestation
and/or at low birth weight and experience a high rate of
hospitalization which endangers the bonding process and
breastfeeding; and whereas newborn multiples are comforted by
their
fetal position together:
I. Families with medically
fragile multiples need specialized education
and assistance to promote and encourage bonding and
breastfeeding. Hospital placement of medically fragile multiples
and
hospital protocols should facilitate family access, including
co-multiples' access to each other.
(See References, Section
III).
WHEREAS multiple birth
infants suffer elevated rates of birth
defects and infant death:
II. Families experiencing
the disability and/or death of co-multiples
need:
A. care and counseling by
professionals who are sensitive to the
dynamics of grief associated with disability and/or death in
co-multiples; and
B. policies which facilitate appropriate mourning of a deceased
multiple or multiples
(See References, Section
IV).
WHEREAS the unassisted
care of newborn, infant, and toddler
multiples elevates their families' risk of illness, substance
abuse, child
abuse, spouse abuse, divorce, and potential for child abuse:
I. Families caring for multiples
need timely access to adequate services
and resources in order to:
A. insure access to necessary
quantities of infant and child
clothing and equipment;
B. enable adequate parental rest and sleep;
C. facilitate healthy nutrition;
D. facilitate the care of siblings;
E. facilitate child safety;
F. facilitate transportation; and
G. facilitate pediatric care.
(See References, Section
V).
WHEREAS families with multiples
have the unique challenge of
promoting the healthy individuation process of each co-multiple
and
of encouraging and supporting a healthy relationship between
the
co-multiples; and, whereas the circumstance of multiple birth
affects
developmental patterns:
I. Families expecting and
rearing multiples need:
A. access to information
and guidance in optimal parenting
practices regarding the unique developmental aspects of
multiple birth children, including the processes of: socialization,
individuation, and language acquisition; and
B. access to appropriate testing, evaluation, and schooling for
co-multiples with developmental delays and/or behavior
problems.
(See References, Section
VI).
WHEREAS twins and higher
order multiples are the subjects of myths
and legends and media exploitation which depict multiples as
depersonalized stereotypes:
I. Public education, with
emphasis upon the training of professional
health and family service providers, and educators, is needed
to
dispel mythology and disseminate the facts of multiple birth
and the
developmental processes in twins and higher order multiples.
(See References, Section
VII).
WHEREAS twins and higher
order multiples suffer
discrimination from public ignorance about their biological
makeup and inflexible policies which fail to accommodate their
special needs:
II. Twins and higher order
multiples need:
A. information and education
about the biology of twinning; and
B.health care, education, counseling, and flexible public policies
which address their unique developmental norms, individuation
processes, and relationship. For example by permitting and/or
fostering:
1. the treatment of medically
fragile co-multiples in the same
hospital;
2. the neonatal placement together of co-multiples in isolettes
and cribs to extend the benefits of their fetal position together;
3. medical, developmental, and educational assessment and
treatment which is respectful of the relationship between
co-multiples;
4. the annual review of the classroom placement of co-multiples,
and facilitation of their co-placement or separate placement
according to the particular needs of each set of co-multiples;
5. the simultaneous participation of co-multiples on sports teams
and other group activities;
6. specialized grief counseling for multiples at the death of
a
co-multiple;
7. counseling services addressing the special needs of adult
multiples.
WHEREAS the participation
by multiple birth infants, children, and
adults as research subjects has made important contributions
to
scientific understanding of the heritability of disease, personality
variables, and the relative influence of nature and nurture on
human
development; and, WHEREAS relatively little is known about optimal
management of plural pregnancy and the unique developmental
patterns of multiples:
I. Scientists must be encouraged
to investigate:
A. the optimal management
of plural pregnancies;
B. norms for developmental processes which are affected by
multiple birth such as: individuation, socialization, and language
acquisition;
C. benchmarks of healthy psychological development, and
relevant therapeutic interventions for multiples of all ages
and
at the death of a co-multiple.
Adopted by the Council
of Multiple Birth Organizations (COMBO)
(comprised of representatives of 16 organizations from ten countries:
Australia, Belgium, Canada, China, Germany, Indonesia, Japan, Sweden,
United Kingdom, United States) (COMBO) of the International Society
for
Twin Studies at the Eighth International Twin Congress, Richmond,
Virginia - May 31, 1995.
__________________________________________
Patricia Malmstrom, Chair
Council of Multiple Birth
Organization
Endorsed by the Board of
the International Society for Twin Studies, May
31, 1995
__________________________________________
Lindon Eaves, President
International Society for
Twin Studies
DECLARATION OF RIGHTS AND
STATEMENT OF NEEDS OF
TWINS AND HIGHER ORDER MULTIPLES
Adopted at the Eighth International
Twin Congress, Richmond, Virginia -
May 31, 1995 by the Council of Multiple Birth Organizations (COMBO),
International Society for Twin Studies.
Endorsing organizations and representatives, May
1995:
Country/Organization/Name
Australia
LaTrobe Twin Study - David
Hay
Australian Multiple Births
Association - Maureen Copeland
Belgium
Association for Research
in Multiple Births - Robert Derom
Canada
Parents of Multiple Births
Association of Canada - Kim Johnson
(known today as Multiple Births Canada)
China
Taipei Twins Association
- Cheh Chang
Germany
ABC Club - Ute Grutzner
Indonesia
Twins Foundation - Seto
Mulyadi
Japan
The Japanese Association
of Twins’ Mothers - Yukiko Amau
Sweden
The Swedish Twin Society
- Margareta Olwe
United Kingdom
Twins and Multiple Births
Association - Rachel Hudson and Audrey
Sandbank
Multiple Births Foundation
- Elizabeth Bryan
U.S.A.
The Center for Loss in
Multiple Birth - Jean Kollantai
The Center for the Study
of Multiple Birth - Donald Keith
Illinois Mothers of Twins
Clubs - Jean Herr
National Organization of
Mothers of Twins Clubs - Rebecca Moskwinski
and Marion Meyer
The Twins Foundation -
Kay Cassill
The Twin to Twin Transfusion
Syndrome Foundation - Mary
Slaman-Forsythe
Twin Services, Inc. - Patricia
Maxwell Malmstrom
STATEMENT OF
NEEDS - REFERENCES
SECTION I - Prenatal
Care
1.Brown, J.E., & Scholesser,
P.T. (1990). Prepregnancy weight
status, prenatal weight gain, and the outcome of term twin gestations.
Am J Obstet Gynecol 162, 182-186.
2.Bryan, E., Higgings, R., & Harvey, D. (1991) Ethical Dilemmas.
In
D. Harvey, & E. Bryan (Eds.) The Stress of Multiple Birth
(pp.
35-42). London: Multiple Births Foundation.
3.Callahan, T.L., Hall, J.E., Ettner, S.L., Christiansen, C.L.,
Greene,
M.F, & Crowley, W.F. (1994). The Economic Impact of Multiple
Gestation Pregnancies and the Contribution of Assisted
Reproduction Techniques to their Incidence. New England Journal
of Medicine, 331 244-9.
4.Cirello, P., Cohn, B., & Malmstrom, P. (1993). "Twinshock:
a
statistical profile of multiple births in California 1986-1989," Berkeley: Twin Services, Inc.
5.Dimperio, D.L. (Fall 1994). Nutritional Management of Multiple
Pregnancy. The American Dietetics Association- The Perinatal
Nutrition Report.
6.Dubois, S., Dougherty, C., Duquette, M., Hanley, J., & Moutquin,
J. (1991). Twin Pregnancy: the Impact of the Higgins Nutrition
Intervention Program on Maternal and Neonatal Outcomes.
American Journal of Clinical Nutrition, 53, 1397-1403.
7.Ellings, J.M., Newman, R.B., Hulsey, T., Bivins, H.A., &
Keenan,
A. (1993). Reduction in Very Low Birth Weight Deliveries and
Perinatal Mortality in a Specialized, Multidisciplinary Twin
Clinic.
Obstetrics & Gynecology, 81(3), 387-391.
8.Grether, J.K., & Schulman, J. (1989). Sudden infant death
syndrome and birth weight. The Journal of Pediatrics 114: 4,
561-567.
9.Jewell, S.E., & Yip, R. (1995). Increasing Trends in Plural
Births in
the United States. Obstetrics & Gynecology, 85(2), 229-232.
10.Kiely, J.L. (1990). The Epidemiology of Perinatal Mortality
in
Multiple Births. Bulletin of the New York Academy of Medicine,
second series, 66:6, 618-637.
11.Keith, L., Papiernik, E., Keith, D. & Luke, B. (Eds).
(1995).
Multiple Pregnancy. New York: Parthenon Publishing Group.
12.Luke, B. (1995). Maternal Characteristics and Prenatal Nutrition.
In
L. Keith, E. Papiernik, D. Keith, B. Luke (Eds.), Multiple
Pregnancy: Epidemiology, Gestation & Perinatal Outcome (pp.
299-307). New York: The Parthenon Publishing Group.
13.Luke, B. (1994). The Changing Pattern of Multiple Births in
the
United States: Maternal and Infant Characteristics, 1973 and
1990.
Obstetrics & Gynecology 84(1), 101-106.
14.Luke, B., Minogue, J., Abbey, H., Keith, L., Witter, F.R.,
Feng,
T.I., Johnson T.R.B. (1992). The Association Between Maternal
Weight Gain and the Birthweight of Twins. Journal of Maternal
and Fetal Medicine 1, 267-76.
15.Luke, B., Minogue, J., Witter, F., Keith, L., Johnson, T.
(1993).
The Ideal Twin Pregnancy: Patterns of Weight Gain, Discordancy,
and Length of Gestation. American Journal of Obstetrics and
Gynecology 169(3), 588-597.
16.Malmstrom, P.M., & Biale, R. (1990). An agenda for meeting
the
special needs of multiple birth families. Acta Genet 39, 507-514.
17.Malmstrom, P.M., Faherty, T.J., & Wagner, P. (1988). Essential
Nonmedical Perinatal Services for Multiple Birth Families. Acta
Genet 37:2, 193-197.
18.Malmstrom, P.M., Wedge, M.W., Faherty, T.F., & Wagner,
P.
(1986, September). Respite Care -- A Lifeline for Low-Income
Families. Paper presented at the meeting of the International
Society
for Twin Studies Congress, Amsterdam, Netherlands.
19.National Academy of Sciences (1990). Nutrition During
Pregnancy. Washington: National Academy Press.
20.Papiernik, E., & Keith, L.G. (1990). The cost effectiveness
of
preventing preterm delivery in twin pregnancies. Acta Genet 39,
361-369.
21.Papiernik, E. (1995). Reducing the Risk of Preterm Delivery.
In L.
Keith, E. Papiernik, D. Keith, & B. Luke (Eds.), Multiple
Pregnancy (pp. 437-451). New York: The Parthenon Publishing
Group.
22.Papiernik, E. (1983). Social Cost of Twin Births. Acta Genet
32,
105-111.
23.Papiernik, E., Mussy, M.A., Vial, M., & Richard, A. (1985).
A
Low Rate of Perinatal Deaths for Twin Births. Acta Genet 34,
201-206.
24.Powers, W.F., Kiely, J.L., & Fowler, M.G. (1995). The
Role of
Birth Weight, Gestational Age, Race and other Infant Characteristics
in Twin Intrauterine Growth and Infant Mortality. In L. Keith,
E.
Papiernik, D. Keith, B. Luke (Eds.) Multiple Pregnancy:
Epidemiology, Gestation & Perinatal Outcome (pp.163-174).
New York: The Parthenon Publishing Group.
25.Powers, W.F., & Kiely, J.L. (1994). The Risks Confronting
Twins:
A National Perspective. American Journal of Obstetrics and
Gynecology 170(2), 456-461.
26.Worthington-Roberts, B. (1988). Weight Gain Patterns in Twin
Pregnancies with Desirable Outcomes. Clinical Nutrition 7(5),
191-196.
27.
SECTION II - Breastfeeding
and Bottle Feeding
28.Gromada, K.K. (1991).
Breastfeeding Multiples. Doubletalk 11
(pp. 18-21).
29.Gromada, K.K. (1985). Mothering Multiples. Franklin Park,
IL:
La Leche League International, Inc.
30.Keith, D., McInnes, S. & Keith, L., (Eds.) (1982). Breastfeeding
Twins, Triplets and Quadruplets: 195 Hints for Success. Chicago:
The Center for the Study of Multiple Birth.
31.Malmstrom, P.M., & Biale, R. (1990). An agenda for meeting
the
special needs of multiple birth families. Acta Genet 39, 507-514.
32.Malmstrom, P.M., Faherty, T.J., & Wagner, P. (1988). Essential
Nonmedical Perinatal Services for Multiple Birth Families. Acta
Genet 37:2, 193-197.
33.Malmstrom, P.M., Wedge, M.W., Faherty, T.F., & Wagner,
P.
(1986, September). Respite Care -- A Lifeline for Low-Income
Families. Paper presented at the meeting of the International
Society
for Twin Studies Congress, Amsterdam, Netherlands.
34.Sollid, D., Evans, B., McClowry, S., & Garrett, A. (1989,
July).
Breastfeeding Multiples. Journal of Perinatal and Neonatal
Nursing, 47-85.
35.
SECTION III - Bonding
36.Anderson, A., & Anderson, B. (1987). Mother's Beginning
Relationship with Twins. Birth 14 (pp. 94-8).
37.Bryan, E., Higgings, R., & Harvey, D. (1991). Ethical
Dilemmas. In
D. Harvey, & E. Bryan (Eds.) The Stress of Multiple Birth
(pp.
35-42). London: Multiple Births Foundation.
38.Bryan, E. (1984). Twins in the Family: A Parent's Guide.
London: Constable & Company, Ltd.
39.Lutes, L. (in press). Bedding Twins/Multiples Together. Neonatal
Network.
40.Lutes, L. (1995, November). Bedding Twins Together: Fostering
Co-Regulation. Paper presented at Developmental Interventions
In
Neonatal Care Conference, Chicago, IL.
41.Malmstrom, P.M., Faherty, T.J., & Wagner, P. (1988). Essential
Nonmedical Perinatal Services for Multiple Birth Families. Acta
Genet 37:2, 193-197.
42.Noble, E. (1991). Having Twins. Boston: Houghton Mifflin Co.
43.
SECTION IV - Loss
44.Biale, R. (1989). Counseling
Families of Disabled Twins. Social
Work 34:6, 531-536.
45.Bryan, E. (1991). But there should have been two. In D. Harvey & E. Bryan (Eds.), The Stress of Multiple Births (pp. 49-58).
London: Multiple Births Foundation.
46.Bryan, E. (1986, September). Support for Parents Who Lose
a
Newborn Twin. Paper presented at the International Society for
Twin Studies Congress, Amsterdam, Netherlands.
47.Sainsbury, M.K. (1988). Grief in Multifetal Death. Acta Genet
37:2, 181-186.
48.Stauffer, A., et al. (1988). Early Developmental Progress
of Preterm
Twins Discordant for Birthweight and Risk. Acta Genet 37, 81-87.
49.
SECTION V - Psychosocial
Risk
50.Groothius, J.R., Altemeier,
W.A., & Robarge, J.P., et al. (1982).
Increased Child Abuse in Families with Twins. Pediatrics 70,
769.
51.McInnes, S. (1979). The Impact of a Multiple Birth on the
Family in Home Help and Social Services. Alberta, Canada:
Parents of Multiple Birth Association.
52.Nelson, H., & Martin, C. (1985). Child Abuse and Neglect.
The
International Journal 9, 501-505.
53.Nelson, H., & Martin, C. (1985). Increased Child Abuse
in Twins.
Report from the Department of Psychiatry, Lexington, KY:
University of Kentucky Medical Center.
54.O'Brien, P.J. & Hay, D.A. (1983). Is Rearing Twins Different?
The Development and Needs of Multiple Birth Children and
Their Families from Birth to School Age. [Pamphlet].
Melbourne, Australia: LaTrobe Twin Study, University of LaTrobe.
55.Robin, M., Josse, D., & Tourrette, C. (1991). Forms of
family
reorganization following the birth of twins. Acta Genet, 39,
53-61.
56.Robin, M., Josse, D., & Tourrette, C. (1988). Mother-Twin
Interaction During Early Childhood. Acta Genet 37:2, 151-160.
57.
SECTION VI - Multiple Birth
Development
58.Ainslie, R. (1985).
The Psychology of Twinship. Lincoln, NE:
University of Nebraska Press.
59.Hay, D.A., et al. (1987). Speech and Language Development
in
Preschool Twins. Acta Genet 36, 213-223.
60.Hay, D.A., O'Brien, P.J. (1986, September). Early Influence
on
the School Adjustment of Twins. Paper presented at International
Society of Twin Studies Congress, Amsterdam, Netherlands.
61.Hay, D.A., et al. (1984). The Role of Parental Attitudes in
the
Development of Temperament in Twins at Home, School and in Test
Situations. Acta Genet 33, 191-204.
62.Lytton, H. (1980). Parent Child-Interaction: The Socialization
Process Observed in Twin and Singleton Families. New York:
Plenum Press.
63.Malmstrom, P.M., & Biale, R. (1990). An agenda for meeting
the
special needs of multiple birth families. Acta Genet 39, 507-514.
64.Malmstrom, P.M., Faherty, T.J., & Wagner, P. (1988). Essential
Nonmedical Perinatal Services for Multiple Birth Families. Acta
Genet 37:2, 193-197.
65.Malmstrom, P.M., & Silva, M.N. (1986). Twin Talk: Manifestations
of Twinship in the Speech of Toddlers. Journal of Child Language
13, 293-304.
66.Matheny, A.P. (1987). Development Research of Twins'
Temperament. Acta Genet 36, 135-143.
67.Matheny, A.P., et al. (1981). Behavioral Contrasts in Twinship:
Stability and Patterns of Difference in Childhood. Child
Development 52, 579-588.
68.Novotny, P.P. (1988). The Joy of Twins. New York: Crown
Publishers, Inc.
69.O'Brien, P.J. & Hay, D.A. (1987). Early Influences on
the School
Social Adjustment of Twins. Acta Genet 36, 239-248.
70.O'Brien, P.J., & Hay, D.A. (1983). Is Rearing Twins Different?
The Development and Needs of Multiple Birth Children and
Their Families from Birth to School Age. [Pamphlet]. Melbourne,
Australia: LaTrobe Twin Study, University of LaTrobe.
71.Pearlman, E.M. (1990). Separation-individuation, self-concept,
and
object relations in fraternal twins, identical twins and singletons.
Journal of Psychology 124:6, 619-628.
72.Rothbart, B. (1994). Multiple Blessings. New York: Hearst
Books.
73.Rowland, C. (1991). Family Relationships. In D. Harvey & E. Bryan
(Eds.) The Stress of Multiple Births (pp. 59-67). London: Multiple
Births Foundation.
74.Sandbank, A.C. (1988). The Effect of Twins on Family
Relationships. Acta Genet 37:2, 161-172.
75.Savic, S. (1980). How Twins Learn to Talk. New York: Academic
Press, Inc.
76.Scheinfeld, A. (1967). Twins and Supertwins. Baltimore: J.B.
Lippincott Co./Pelican Books.
77.Segal, N.L. (1987, May/June). Jealousy: Does It Put Twins
in
Double Jeopardy? Twins Magazine 36, 36-59.
78.Wallace, M.(1986). The Silent Twins. New York: Prentice Hall
Press.
SECTION VII - Training
79.Bryan, E. (1983). The
Nature and Nurture of Twins. London:
Bailiere Tindall.
80.Bryan, E., & Harvey, D. (Eds.) (1991). The Stress of Multiple
Birth. London: Multiple Births Foundation.
81.Malmstrom, P.M. (1995, May). The Influences of Popular
Mythology Upon Multiple Birth Parenting Practices.
Presentation at International Society for Twin Studies Congress,
Richmond, Virginia.
82.Malmstrom, P.E.M., (Ed.) (1996). Trainings in Twincare -
Promoting Preventive Care of Twins and Higher Order
Multiples in County-based Health and Social Service
Organizations. Berkeley: Twin Services, Inc.
83.Malmstrom, P.E.M., & Biale, R. (1996). Twincare - Protocols
for
Health and Parenting Education and Psychosocial Services for
Families With Multiples. Berkeley: Twin Services, Inc.
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