Degrees of separation – caring for conjoined twins

16 Jan 2017, 2:18 p.m.

Joe Curry, Consultant Neonatal and Paediatric Surgeon, explains how collaborative expertise and state-of-the-art facilities are vital to the complicated procedure of separating twins.

Does Great Ormond Street Hospital (GOSH) receive a large number of cases of conjoined twins? 

The separation of conjoined twins is probably the rarest operation we do — the incidence is around one in 250,000. There are approximately three quarters of a million babies born annually in the UK, and we’d expect to see three sets of conjoined twins a year. Regrettably, some of these babies don’t survive pregnancy, so we usually perform around one separation a year. GOSH is the leading centre in Europe for performing these separations.

When are you able to diagnose a set of conjoined twins?

In the vast majority of cases, prenatally. Once a diagnosis is made we perform further scans to understand how, and where, the twins are joined. From this, we can assess whether or not we feel that separation is possible and give the parents the information they need to make decisions about their babies’ futures. They then decide how they wish to proceed, but whatever they choose, we are there to support them.

How do you plan the operation to separate the twins?

It’s only once the babies are born that we can begin the real planning process. We make a fairly immediate decision as to whether the babies are so unwell that we need to perform the separation very soon or, if they are stable enough for us to wait a few months, giving them time to grow and get stronger. It’s a really important decision – twins that are separated months later have a survival rate of more than 90 per cent, whereas the survival rate drops to around 40 per cent for immediate operations. If we do have the extra months, we arrange planning meetings where we can bring everyone together to work out each critical detail.

How many members of hospital staff are involved in a separation? 

The number of staff changes with every case – depending on where the babies are joined, we call on colleagues from different specialties. My team, the Specialist Neonatal and Paediatric Surgery team, are always involved as we have the experience of looking after babies requiring surgery, and we are most commonly joined by staff from the Urology, Orthopaedic and Plastic Surgery teams. We have had twins joined at the head or where the lower spine is implicated, so then we would recruit colleagues from our Neurosurgery team.

Besides the surgeons, there’s a whole host of other people who are integral — we’ve estimated that there can be between 60 and 100 people involved in separating a pair of twins, so it really is a hugely collaborative effort. At GOSH, we are really lucky to have so many specialists under one roof.

How important is the operating theatre environment at GOSH to the success of these operations? 

It has extremely advanced technology and is large enough that we can now perform the separation and the closure of both twins in one theatre. The ergonomic nature of the space also means we can fit all the equipment we need into the theatre comfortably. The separation of twins can take many hours so it’s really important that the staff have a calm and practical space to work in. It has a viewing gallery, which means that people can watch and learn without disturbing anyone inside the theatre, and it also has the visual capability to broadcast the operation to other locations across the world.

It’s critical that two teams can work independently in one environment. Throughout the operation each team works on one baby — there’s a lead surgeon for each child, an anaesthetist for each child, and so on. To make it extremely visible who is part of which team we suggested that all the theatre staff wear coloured scrub caps — blue for one team and pink for the other.

What is the outlook for the twins after they have been separated? 

We work on a case-by-case basis. For example, we were able to discharge the most recent set of twins to our patient hotel, across the road from the hospital, after just four days. This was our quickest discharge ever, but it really does depend on the severity of the case. There are some twins who will face weeks, if not months, in hospital and will require many follow-up surgeries.

We are delighted with the most recent twins as it is very unlikely that they will need any more surgery. It’s wonderful for the team and I to know that we’ve been able to help these babies to the extent that they can go home and never need to come back to us.

Learn more

Discover more about the world-leading research and surgery taking place at GOSH - visit the hospital website for the latest updates, or read the story of Ruby and Rosie.

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