Excerpted from
"Irish group Every Life Counts launches global campaign to end
‘incompatible with life’ label," LifeSiteNews. March 11,
2015 — Irish families have joined with international medical experts and
disability advocacy groups to launch the Geneva Declaration on Perinatal Care at
the United Nations. The Declaration, which is the centerpiece to a global
campaign to end disability discrimination caused by the “incompatible with life”
label, has already been signed by more than 200 medical practitioners and
researchers and 27 disability and advocacy NGOs. It aims to improve care for
mother and baby where a life-limiting condition has been diagnosed before or
after birth.
At the event, families from Ireland, Northern Ireland, Canada, Spain and
Switzerland said that the label “incompatible with life” was not a medical
diagnosis and was causing “lethal discrimination against children diagnosed with
severe disabilities, both before and after birth.”
Barbara Farlow, whose ground-breaking research led to a new understanding of
the experiences of families where children had a life-limiting condition, said
that the label “incompatible with life” had been shown to lead to sub-optimal
care after birth and the phrase dehumanised children.
Professor Giuseppe Benegiano, former director of special programmes for the
UN, said that the UN should give support for this important initiative against
disability discrimination. Professor Bogdan Chazan, an imminent obstetrician
from Poland, said that babies with a challenging diagnosis deserved better care
than abortion.
CMDA Member and Care Net Medical Advisor Sandy Christiansen, MD,
FACOG: “The mark of a civilized society is the degree to which it
protects its weakest most vulnerable members. Psalm 82:3 admonishes us to
‘Defend the weak and the fatherless; uphold the cause of the poor and the
oppressed’ (NIV 2011). The Geneva Declaration is a beautiful example of the
fulfillment of this passage.
“Routine prenatal testing seeks to detect fetal abnormalities before birth.
With the discovery of a problem, what choices are offered? Data across the globe
report that anywhere from 29 percent to 85 percent of fetuses with Down Syndrome
are aborted.
123 But some families are choosing a different path and
finding joy in the journey. Turning away from the offered termination of
pregnancy for a fetal anomaly that has been pronounced ‘incompatible with life,’
some couples have instead chosen to embrace every minute of life their child
has—both inside and outside the womb. They face pressure from healthcare
professionals to abort and experience lack of understanding from family and
friends. Yet, 97 percent of respondents in a 2012 study of families with
children with trisomy 13 and 18 described their child as happy and parents
reported these children enriched their family.
4 Their experience was
incongruent with the dismal picture predicted by their physicians. The most
common negative comment made by parents in this study was a sense that
healthcare professionals did not see their baby as having value, as being unique
and as being a
baby.
“A recent study looked at women who aborted and women who carried after
learning their babies were diagnosed with a life-limiting diagnosis. The
abortion group experienced more grief, depression and emotional stress, and they
also had symptoms consistent with post traumatic stress disorder (PTSD) for up
to seven years after the abortion as compared to the women who chose to carry
group.
“Evidence is mounting to support the benefits of taking a hands-off approach
to a life-limiting prenatal diagnosis and simply allowing couples to spend time
with their unborn babies for as long as they have them. As Christian healthcare
professionals, we should be prepared to offer families a different option to the
default termination solution so often given for an adverse prenatal diagnosis.
Words need to be chosen carefully, avoiding terms like ‘incompatible with life;’
instead, we should use words that affirm the baby’s life and value as a human
being. Couples who choose to carry their child should be connected to resources
that provide the support and understanding they desperately need.
“Perinatal hospice
5 is a unique solution and can be thought of as
‘hospice in the womb.’ It is easily incorporated into routine prenatal care and
birth planning. A team approach can include obstetricians, perinatologists,
labor and delivery nurses, NICU staff, chaplains/pastors and social workers, as
well as genetic counselors and traditional hospice professionals. It enables
families to make meaningful plans for the baby's life, birth and death, honoring
everyone.”
6
1Siffel, C., Correa, A., Cragan, J., & Alverson, C. (2004).
Prenatal Diagnosis, Pregnancy Terminations And Prevalence Of Down Syndrome In
Atlanta. Birth Defects Research Part A: Clinical and Molecular Teratology,
70(9), 565-571.
2Khoshnood B, De Vigan C, Vodovar V, Goujard J,
Goffinet F (2004) A population-based evaluation of the impact of antenatal
screening for Down's syndrome in France, 1981–2000. BJOG 111:
485–490.
3Leroi, A. (2006). The future of neo-eugenics. Now that
many people approve the elimination of certain genetically defective fetuses, is
society closer to screening all fetuses for all known mutations? EMBO Reports,
7(12), 1184-87. Retrieved April 2, 2015, from
http://embor.embopress.org/content/7/12/1184.
4Janvier
A. Farlow B. Wilfond B. (2012)The Experience of Families With Children With
Trisomy 13 and 18 in Social Networks Pediatrics Vol. 130:293 -298 (doi:
10.1542/peds.2012-0151).
5Hoeldtke, N., & Calhoun, B. (2001).
Perinatal Hospice. American Journal of Obstetrics & Gynecology, 185(3),
525-29.
6Calhoun, B., Napolitano, P., Terry, M., Bussey, C., &
Hoeldtke, N. (2003). Perinatal hospice. Comprehensive care for the family of the
fetus with a lethal condition. Journal of Reproductive Medicine, 48(5),
343-8.
Resources
Perinatal Hospice Resources in the U.S.
CMDA’s Abortion Ethics Statement
CMDA’s Human Life Ethics Statement