Running a Spina Bifida Fetal Surgery Service Across Two Countries

Prof. Anna David with Prof. Jan Deprest and Dr. Emma Bredaki

When the COVID-19 pandemic arrived in Europe in Spring 2020, the four-month-old NHS England highly specialised commissioned fetal surgery service for open spina bifida was fledgling. The joined-up clinical service based across two academic health science centres, at University College London Hospital in Central London and Universitaire Ziekenhuizen (UZ) Leuven in Belgium, was working well. Patients were travelling to each site for final imaging assessment and surgery, based on the geography of their referring unit: Northern Ireland, Scotland, North Wales and North of England patients to Leuven, and Midlands, South Wales and South of England to UCLH. The virus did not feature much in our weekly calls with NHS England specialised commissioners in February 2020. By March, however, it was clear that a mitigation plan was needed to ensure the sustainability of this first NHS fetal surgery service, putting patient safety above all else.

We drew up three Scenarios to cover all potential outcomes. Postnatal repair of spina bifida is always an option for patients who choose to continue their pregnancy affected by fetal spina bifida. This was Scenario 3 and would only be enacted if we were unable to sustain the service due to complete lockdown for patients and staff.

Scenario 2 would be set in motion if patient travel to Belgium was not possible. We agreed that it would still be possible to maintain a functional clinical service by only operating in the UK. It got close to this Scenario, but despite huge logistical barriers, throughout the pandemic we have managed to maintain Scenario 1, whereby travel is possible for both patients and staff to and from Belgium.

Was it even reasonable to offer fetal surgery in times of national disaster?¹  Early on we agreed not to operate on a patient, or delay surgery if they had symptoms or tested positive for COVID-19. Safety for all participants, both patient and staff, was key. Data emerging from China, Hong Kong and Italy suggested that pregnant women infected with SARS‐CoV2 did not seem to have a worse disease course than non‐pregnant women, but that infection could lead to preterm birth in common with other virus infections. Open fetal surgery in itself carries an increased risk of preterm birth, hence our caution. Strong data on vertical transmission of SARS‐CoV2 from mother to fetus was also lacking. Both hospital centres were well-equipped with PPE, and we did not suffer from a lack of High Dependency Beds. We liaised closely with Intensive Care Unit (ICU) colleagues as to their capacity. Fortunately, ICU has never been required.

The start of the surgery program, which was as a charitable funded service back in May 2018, trained at least 3-4 staff per role in the team, which gave built-in resilience when the units became commissioned by the NHS. When the pandemic struck in March 2020, the risk of staff sickness was an early concern, but we had inbuilt staff numbers to manage. Being a service between two countries, we had always adopted digital care in addition to face-to-face service provision. Our Fetal Surgery fellow, who coordinates the service, was accustomed to first telephoning couples to talk through the treatment and establishing whether the patient was eligible. This rapidly converted into a routine offer of video appointments as a first triage system. Our MDTs were transformed into "digital heaven" where we could admire MRI and ultrasound images shared via PACS (Picture Archiving and Communication System). Liaison with regional Fetal Medicine Units when there were complex social issues to consider was simple – why had we never done this before? Our annual UCLH Fetal Medicine Unit meeting in December 2020 was the best attended ever, making the most of the Zoom virtual platform to disseminate updates widely across the UK about our service.

Looking back on the last 12 months, it has been the flexible, speedy communication and teamwork with critical support from commissioners and referring Fetal Medicine Units that made service continuity possible. Patients and their partners have played an important role, being willing to travel to access surgery despite restrictions, knowing that we are providing the best evidence-based care. It’s the little acts of selflessness that we remember. Such as the Airbnb host who allowed a patient’s husband to stay locally in Belgium during the first lockdown, or staff coming in on their annual leave to cover for those who were self-isolating. Travel for critical staff to and from the continent has become logistically more complex in terms of paperwork and regular COVID-19 testing, and still we manage. BREXIT happened in the midst almost as an afterthought against the background of a pandemic. The crisis has made us think about what is critical in fetal medicine care and brought out the best in our global community. It’s not over yet, but we will take forward the learning to improve patient care with a focus on safety.

References

1. Deprest J, Van Ranst M, Lannoo L, Bredaki E, Ryan G, David A, Richter J, Van Mieghem T. SARS-CoV2 (COVID-19) infection: is fetal surgery in times of national disasters reasonable? Prenatal Diagnosis 2020;40:1755-1758.  DOI: 10.1002/pd.5702