The Family Impact of a Robin Sequence Prenatal Diagnosis

Abstract

Objective Assess the impact of prenatal diagnosis of Robin sequence (RS) on parental experience during gestation and early infancy. Design Prospective case-control study. An online survey was administered via email to 44 parents representing 34 unique patients with RS. Participants Parents of children diagnosed with RS and who received mandibular distraction at our tertiary care children's hospital. Participants were separated by the timing of RS diagnosis into prenatal and control postnatal groups. Main Outcome Measures Effects of timing of diagnosis on parents’ preparation, caregiver support, education about the condition, stress, and overall mental health. Results Complete responses were received from 44 parents representing 34 unique patients (50% response rate): prenatal, n = 17; postnatal, n = 27. Prenatal diagnosis improved parents’ satisfaction regarding time to prepare for treatment ( P = .001), stress of uncertainty about their child's health ( P = .018), and stress about the operation(s) their child would need ( P = .001). Both the prenatal (82%) and postnatal (78%) groups reported a negative impact on mental health based on diagnosis timing. All parents in the prenatal group preferred having received a prenatal diagnosis and the majority of the postnatal group (85%) would have preferred to have received the diagnosis prenatally. Conclusions Prenatal diagnosis of RS provided tangible benefits for parents by allowing them to mentally prepare, make plans for delivery and treatment, and become educated about the condition. Parents in both groups reported a negative impact on their mental health based on diagnosis timing and the majority of parents consistently preferred prenatal diagnosis.