Prenatal screening and women's perception of infant disability: A Sophie's Choice for every mother

Abstract

Prenatal screening can significantly benefit parents and the community. However, it has created a dilemma for women as it requires them to quickly decide whether to continue a pregnancy or terminate it should the test indicate a foetal abnormality. This can be psychologically traumatic for women torn between their connection to an unborn child with all its possible imperfections, and a desire to prevent its suffering as a disabled child in later life. A woman must also consider her own and her family's future welfare. Extensive research into the physical aspects of prenatal screening has not explored the meaning of the experience for women or whether termination is the most appropriate option. This article examines recent qualitative studies, concluding that women who terminate a pregnancy following prenatal screening may experience an acute grief reaction or be plagued by guilt and fear that can precipitate marital breakdown. Additionally, there is a risk that through striving to eradicate congenital disability, a community risks promoting a cult of perfectionism that may have discriminatory effects on disabled people.

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

“…The difficulties for women of making such a choice, while coping with growing attachment to their unborn baby, and wider social views about disability have also been emphasised. 395 Informed choice is also a controversial area for professionals, and obstetricians' views of which conditions are serious enough to merit termination may not concur with women's views: 14% of obstetricians would never recommend termination for cystic fibrosis and 13% would not recommend late terminations for Down's syndrome. 396 Parents of children with metabolic disorders, asked if they would consider screening for future pregnancies, only wished to do so in 56% of cases, but 41% had acted to prevent further affected pregnancies.…”

Interaction between caregivers and families expecting a malformed child

“…1996, Posa et al . 1997, Posa 1998), and relatively few nursing studies have addressed the subject (Lemons & Brock 1990, Sandelowski & Jones 1996, Schroeder 1996, Chandler & Smith 1998, Bourguignon et al . 1999, Askey & Moss 2001).…”

Parents' dilemmas and decision making on the outcome of pregnancy after prenatal diagnoses of fetal anomalies

“…Ipak, rano donošenje odluka, na osnovu nedovoljno pouzdanih i proverenih podataka, kao što su oni dobijeni skrining procedurama, može nositi određenu težinu za roditelje. U jednoj preglednoj studiji koja je obuhvatila više kvalitativnih istraživanja pokazalo se da su se kod žena koje su prekinule trudnoću nakon prenatalnog skrininga javljala snažna osećanja tuge, straha i krivice, što je kod nekih parova dovodilo čak i do sloma braka (Chandler & Smith, 1998). Ovakve reakcije mogle bi biti posledica kratkog vremenskog perioda za donošenje odluke i nedovoljne uverenosti roditelja u adekvatnost sopstvenog izbora.…”

“…U oko 2% slučajeva primene prenatalne dijagnostike rezultat je nepovoljan, te je potrebno doneti odluku o prekidu, odnosno nastavku trudnoće (VanPutte, 1988, prema Bryar, 1997. Kako savremena tehnologija postaje šire dostupna, sve je veći broj roditelja pred koje se postavlja ova dilema, koju pojedini autori smatraju najvećom etičkom dilemom našeg vremena (Chandler & Smith, 1998).…”