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Poster Presentations
20 Fetal closure of myelomeningocele – Experience of the spina bifida MDT clinic at GOSH at 5 years
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  1. Lucy Alderson1,
  2. Sheree Dean1,
  3. Susan Maestri1,
  4. Zubair Tahir1,
  5. Paolo De Coppi1,
  6. Dominic Thompson2
  1. 1Great Ormond Street Hospital for Children NHS Foundation Trust, UK
  2. 2On behalf of the joint prenatal surgery service – Great Ormond Street Hospital for Children NHS Foundation Trust, UK, University College Hospital, University College London Hospitals NHS Foundation Trust, UK and University Leuven, Belgium

Abstract

Background Since 2018 NHS England has supported fetal surgery for spina bifida (SB) through a GOSH, UCLH and Leuven, Belgium partnership. Children across the UK, have centralised follow-up at GOSH specialist multidisciplinary team (MDT) clinic, providing assessment at specified time points and responsive management to acute needs.

Aims To describe the outcome of children with fetal closure of SB and identify needs of service users within a collaborative NHS partnership.

Methods Retrospective Service evaluation (Registration no: 3118) of patients who underwent fetal surgery (~24wks GA) as per MOMs trial,1 between Jan 2018-Aug 2023. Outcomes were extracted from Electronic Patient Record (EPR) and comprised GA at delivery, shunt placement rate and urological status Myelomeningocele Motor Functional Classification (MMFC)2 was completed for the pre-school cohort.

Results 32 children were delivered at UCLH or local maternity unit between August 2018- October 2022 following fetal surgery for SB. 50% GA >= 36 weeks; 44% GA 32-<36wks; 2 children were delivered <32wks GA. 19 under GOSH exclusively, whilst 13 followed up in partnership with other UK centres. GOSH catchment children were seen as prescribed +/- 2 months (newborn, 6m, 12m, 24m, 36m, <60m) with shared care cohort seen at 12m, 24m and < 60m – virtually or face-to-face.

Outcomes 2/3 shunt free; > 3yrs 2 have successfully toilet trained whilst 10 use CIC to support bladder emptying; pre-schoolers: 2 wheelchair uses (MMFC1), 5 walking independently or stepping with support (MMFC2-4). EPR and MyGOSH enabled timely response to queries from across team.

Conclusion GOSH specialist clinic supports SB children following fetal surgery. Hybrid visits enabled planned and acute follow-up to continue through the pandemic. A reduced need for shunts and further invasive surgery, and improved mobility was observed in keeping with best international results.

References

  1. Adzick, et al. N Engl J Med 2011;364(11):993–1004

  2. Dias. J Child Orthop 2021;15(1):1–5

Acknowledgements for funding or support This presentation details a service evaluation of the 30 month outcomes of the Joint prenatal surgery service GOSH, UCH and University Leuven. Their pioneering work was supported by the GOSH and UCLH Charities and by GOSH and UCLH NIHR BRC. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health

https://doi.org/10.1136/bmjpo-2023-GOSH.10

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