Fetal spina bifida: What we tell the parents

Gotha, Lara; Pruthi, Vagisha; Abbasi, Nimrah; Kulkarni, Abhaya V.; Church, Paige; Drake, James M.; Carvalho, Jose C. A.; Diambomba, Yenge; Thakur, Varsha; Ryan, Greg; Mieghem, Tim Van

doi:10.1002/pd.5802

Cited by 20 publications

(26 citation statements)

References 91 publications

(161 reference statements)

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“…Another strength is that this study provides a first in‐depth exploration of parental experience of fetal surgical SB repair focussing on the acceptability of the intervention, and thereby supports the provision of patient‐centred care 45‐47 . Two recent studies describing the information recommended to counsel parents whose fetus has SB did not address the patient perspective, or did so to a limited extent 48,49 . However, this study has several limitations.…”

Section: Discussionmentioning

confidence: 94%

“…[45][46][47] Two recent studies describing the information recommended to counsel parents whose fetus has SB did not address the patient perspective, or did so to a limited extent. 48,49 However, this study has several limitations. We only had access to women referred for potential surgery at two centres managed by identical surgical teams.…”

Section: Strengths and Limitationsmentioning

confidence: 93%

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‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Crombag

Sacco

Stocks³

et al. 2021

Prenatal Diagnosis

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Objective: To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. Methods:A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. Results:To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. Conclusion:Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy. Key pointsWhat's already known about this topic? � Maternal-fetal surgery for open spina bifida has the potential to improve long-term outcomes but at significant procedure-related fetal and maternal risk; 910 -Prenatal Diagnosis.

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Section: Discussionmentioning

confidence: 94%

Section: Strengths and Limitationsmentioning

confidence: 93%

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Crombag

Sacco

Stocks³

et al. 2021

Prenatal Diagnosis

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“…The impact of this on postnatal neurodevelopmental outcome is currently unclear 19 . Indeed, most children with spina bifida have (close to) normal neurodevelopment and are able to attend regular schooling 20 . Adverse developmental outcomes have nevertheless been identified in those with associated brain anomalies or anomalies of the corpus callosum [21][22][23] .…”

Section: Discussionmentioning

confidence: 99%

Correlation of fetal ventricular size and need for postnatal cerebrospinal fluid diversion surgery in open spina bifida

Agrawal

AlRefai

Abbasi

et al. 2022

Ultrasound in Obstet & Gyne

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What are the novel findings of this work?This study on fetuses with open spina bifida supports the previous finding of an association between the timing of closure (prenatal or postnatal) and the need for postnatal cerebrospinal fluid (CSF) diversion. Our findings also demonstrate that ventriculomegaly is associated independently with the need for postnatal CSF diversion, irrespective of timing of closure. Fetal ventriculomegaly progresses at a similar rate in fetuses with open spina bifida that undergo prenatal closure and those that undergo postnatal closure. What are the clinical implications of this work?The findings of this study should help in clinical counseling regarding the need for postnatal CSF diversion in patients undergoing fetal or postnatal spina bifida closure.

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“…Prior to choosing prenatal or postnatal MMC surgery patients typically go through extensive counseling. 4,5 Although previous research has delineated the risks and benefits of these procedures, many families also consider non-medical factors when making medical decisions. Previous studies have suggested that families consider their religious/spiritual beliefs, finances, family values and planning, support systems, and ability to care for the infant long term prior to physician consultation.…”

Section: Introductionmentioning

confidence: 99%

Factors impacting surgical decision making between prenatal and postnatal repair for myelomeningocele

Fabelo

Lim

et al. 2021

Prenatal Diagnosis

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Objectives: To determine factors influencing patients to choose prenatal or postnatal repair of their child's myelomeningocele (MMC) when both treatment options are offered. Methods:We distributed a retrospective survey via email and social media to parents of children with MMC who were offered both prenatal and postnatal surgery as intervention options.Results: A total of 127 surveys met all inclusion criteria. The majority of responders considered partner's opinion (85%), maternal risks of prenatal surgery (71%), and risk for preterm labor (76%) as influencers. Financially, the costs of childcare (39.4% postnatal, 13.8% prenatal, p = 0.002), relocation (57.6% postnatal, 36.2% prenatal, p = 0.019), and travel (51.5% postnatal, 33% prenatal, p = 0.033) were more influential for the postnatal group while insurance coverage (36.4% postnatal, 68.1% prenatal, p = 0.003) was more influential to the prenatal group. Of the medical factors, the consideration of maternal risk for transfusion was different between surgical groups (39.4% postnatal, 18.1% prenatal, p = 0.015). The open responses suggest that both surgical groups found the quality of life for the baby to be significant to their decision-making.Conclusions: These findings should guide providers to tailor counseling to patient's needs. Comprehensive counseling should include information on financial resources, referral to financial counselors, and psychosocial support services. Key pointsWhat is already known about this topic? � Prenatal surgery to repair myelomeningocele has improved outcomes for children based on results of the 2011 MOMs trial � Although prenatal surgery is associated with improved outcomes for the fetus some patients still opt for a postnatal repair when eligible for a prenatal repair � Patients face considerable challenges when making surgical decisions including familial influences, social influences, and financial influences

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Fetal spina bifida: What we tell the parents

Cited by 20 publications

References 91 publications

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

‘We did everything we could’– a qualitative study exploring the acceptability of maternal‐fetal surgery for spina bifida to parents

Correlation of fetal ventricular size and need for postnatal cerebrospinal fluid diversion surgery in open spina bifida

Factors impacting surgical decision making between prenatal and postnatal repair for myelomeningocele

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