Multidisciplinary Perinatal Palliative Care Plan for a Pregnant Woman Carrying a Fetus with Trisomy‐13 and Her Family

Background: Perinatal loss is an outcome in approximately 1.2% of pregnancies beyond 20 weeks until one month postpartum. The leading causes of infant death in the United States are congenital malformations, deformation, and chromosomal abnormalities that contribute to an infant mortality rate of 6.75 per 1000 live births. Perinatal palliative care is an emerging specialty dedicated to providing health care to fetuses diagnosed prenatally with life‐limiting conditions and supportive care to parents and families. One center that specializes in caring for infants with birth defects implemented a multidisciplinary perinatal palliative care plan to support a pregnant woman whose fetus was diagnosed with Trisomy‐13 and her family. Case: A 38‐year‐old G3P1011 presented at 22 weeks gestation for an evaluation of a pregnancy complicated by a fetus with multiple anomalies and a confirmed diagnosis of Trisomy‐13. The woman was referred to our center for further diagnostic imaging and discussion about perinatal management options. The family was interested in perinatal palliative care, and a consultation with the palliative care team was arranged. Subsequent to the consult the woman decided to continue her care at our facility. A multidisciplinary care team consisting of a psychologist, social worker, child life specialist, advance practice nurses, and maternal/fetal medicine physicians met with the family every 2 weeks. The woman continued to have routinely scheduled prenatal visits with her providers to develop a birth plan with the family. The psychosocial staff assisted the family with navigating through the grief process. The woman was scheduled for repeat cesarean at 38 weeks gestation, which allowed the family time to make arrangements. Regrettably, the woman presented to triage at 35 weeks 3 days gestation with an intrauterine fetal demise. Conclusion: Widespread knowledge about perinatal loss and the grief that follows has enabled nurses to be ideally situated to provide family centered obstetric care for these women. When death is expected, nurses continue to relay information, provide prenatal care, and coordinate supportive services even after an infant has died. Close collaboration among nursing and psychosocial team members ensured that obstetric management was well coordinated. Specific strategies on the vital role nurses played with this case and the partnership with the psychosocial team will be shared.