New research by GIFT-Surg explores the strategies parents employ when considering fetal surgery as an option for the management of spina bifida in their fetus. It has found that, despite the risks incurred, fetal surgery remains a highly acceptable intervention to those who opt for it.
The study, published in Prenatal Diagnosis, involved interviews with parents whose fetuses with spina bifida were eligible for fetal surgery. Prospective parents receiving an antenatal diagnosis of spina bifida often face uncertainties regarding the future of their unborn child and the options provided (including fetal surgery, postnatal management and the termination of pregnancy) pose major ethical challenges.
Prof Anna David, Professor of Obstetrics and Maternal Fetal Medicine at UCL said: “We are extremely grateful to all the parents who took part in this research study. In addition to making major decisions about their pregnancy and baby, the couples gave their time to talk in depth with our researchers.”
While fetal surgery can improve medium and long-term neurological outcomes, it comes with significant risk to the baby and the mother, including the potential of premature membrane rupture, preterm delivery and rarely fetal death.
However, the research revealed that the acceptability of the intervention among parents remained high prior to and directly after the procedure, as well as 3-6 months postnatally. Parents’ expectations seemed to be realistic, yet were driven by hope of the best outcome. None of the study participants expressed regret about their decision at any stage and at the final interview, all of them were happy with their child’s outcome, which they reported as being often better than they hoped for.
Dr Neeltje Crombag, Midwife and Research Fellow at KU Leuven and University College London and the study’s lead researcher said: “The parental responsibility towards their unborn child seemed to be an important motivating factor in the parents’ decision to undertake fetal surgery. The parents in our study valued information and care focusing on the future from healthcare providers and the recognition of the fetus as a future child.”
The parents interviewed were often referred long-distance, or even to treatment abroad and a perceived break in the continuity of care between treatment centre and referral centre caused additional stress to an already intense pregnancy trajectory.
Some mothers were diagnosed with mental health issues after the birth of their baby, which they relate to events they experienced during their pregnancy. This suggests that women undergoing the procedure require appropriate follow-up and support to detect increased risks of mood and anxiety disorders. Notably, the parents who took part in this study – including those who were diagnosed with mental health issues – reported adjusting adequately to their new situation, regardless of the individual outcome.
The small group of study participants who opted for termination of pregnancy felt that fetal surgery offered insufficient certainty of substantial improvement in quality of life. The perceived severe impact of spina bifida drove their decision to end the pregnancy.
Prof Jan Deprest, Professor in Obstetrics and Gynaecology, UZ Leuven said: “This study provides the first in‐depth exploration of parental experience of spina bifida repair using fetal surgery, focusing on the acceptability of the intervention. Our findings have important implications for enhancing patient-centred care in this area.”
Prof Neil Marlow, Professor of Neonatal Medicine, University College London added: “Being able to understand parents’ feelings and attitudes helps us to improve our counselling and their engagement in these life changing decisions.”