Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18

Abstract

Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their pregnancy. We sent 503 invitations to answer a questionnaire to parents who belong to T13 and 18 internet support groups. Using mixed methods, we asked parents about their prenatal experience, their hopes, the life of their affected child, and their family experience. 332 parents answered questions about 272 children; 128 experienced PND. These parents, despite feeling pressure to terminate (61%) and being told that their baby would likely die before birth (94%), chose to continue the pregnancy. Their reasons included: moral beliefs (68%), child-centered reasons (64%), religious beliefs (48%), parent-centered reasons (28%), and practical reasons (6%). At the time of the diagnosis, most of these parents (80%) hoped to meet their child alive. By the time of birth, 25% chose a plan of full interventions. A choice of interventions at birth was associated with fewer major anomalies (P < 0.05). Parents describe "Special" healthcare providers as those who gave balanced and personalized information, respected their choice, and provided support. Parents make decisions to continue a pregnancy and choose a plan of care for their child according to their beliefs and their child's specific medical condition, respectively. Insights from parents' perspective can better enable healthcare providers to counsel and support families.

Obstetricians' views on the ethics of cardiac surgery for newborns with common aneuploidies

“…While this survey was not designed to differentiate between different definitions of autonomy, the free‐text responses seemed to conform to the first two models as opposed to the last model. On the other hand, some parents with babies with trisomy 18 or trisomy 13 diagnosed prenatally and who decided to continue the pregnancy felt that health‐care providers tried to convince them on multiple occasions to terminate the pregnancy and were concerned that their children may be devalued . Health‐care providers want to involve patients in the decision‐making process, not just because of patient autonomy, but they believe that patient outcomes will improve with patient involvement (beneficence) .…”

Integrating Parents in Neonatal and Pediatric Research

“…Very often, results are presented in ways which are difficult to understand. Noninferiority studies in particular are often presented with tortuous phrases such as “This study of women with gestational diabetes failed to show that use of glyburide compared with subcutaneous insulin does not result in a greater frequency of perinatal complications” [34], which are difficult for anyone to interpret, let alone the general public. Expert resource parents can help us optimize the knowledge transfer aspect of our research [1].…”

Prenatal screening and prenatal diagnosis: contemporary practices in light of the past

“…The Massachusetts Down Syndrome Congress, an advocacy organisation, reports an increase in referrals to its organisation from healthcare professionals subsequent to the new law 51. There are reports of obstetricians who refuse to continue caring for pregnant women who decline to terminate their pregnancies after serious anomalies were diagnosed prenatally 52. The professional requirement of non-directive counselling is not always met 53 54…”

“…Some use the term public health genetics to highlight the health rather than social orientation of contemporary practices 62. It is debateable whether everything for which PNS, PND and PGD are used routinely is ‘objectively bad’ 44 52 63. For instance, given that many people born with Down syndrome live long, healthy and fulfilling lives, the justification cannot be that Down syndrome is objectively bad and abortion will free them from a life of suffering 64 65.…”