We were struck by the bravery of the couples who contributed to the documentary’
Our centre for fetal care, based at Queen Charlotte’s & Chelsea Hospital, recently featured in the powerful ITV documentary 'Ellie Simmonds: should I have children?'.
The programme explored the often difficult and emotional decisions faced by expectant parents when they learn their baby may be born with a disability, as well as the support available to them. We caught up with Professor Christoph Lees and Miss Bryony Jones from the fetal care team, who both appeared in the documentary, to find out more.
Christoph is head of fetal medicine and honorary consultant in obstetrics and Bryony is consultant obstetrician and fetal and maternal medicine specialist. They are both part of the Trust’s maternity services, which are rated as outstanding by the Care Quality Commission.
Tell us about the documentary and how you got involved in the documentary.
Christoph: It was a pleasure to work with Ellie and the production team at Flicker on this documentary. They contacted our comms team last autumn, asking if we would be interested in being part of a programme exploring whether attitudes towards babies born with disabilities have changed in the 30 years since Ellie’s own birth when she was given up for adoption.
We were immediately very keen to be involved as these are important issues which are still very much shrouded in mystery. We want the public to have a sense of what parents go through when the unexpected happens – and to be reassured that there are services like ours to help.
We got to know Ellie and the production crew quite well over the months they spent with us as part of their research and also the filming itself, including meeting our doctors, geneticists, cardiologists, midwives, counsellors and some of our patients too.
What did you think of the documentary?
Bryony: I watched it with my daughter. We found it deeply moving and were really struck by the bravery of the couples who contributed to the documentary – they were so open about the challenges and complexity of the decisions they’ve faced. Deciding whether to continue a pregnancy is one of the hardest things any one can face, and I think they conveyed this really well in the documentary.
Ellie is an amazing woman. For her to share such a sensitive personal part of her own journey was quite extraordinary and it was a pleasure to be part of that. I really hope that, during the process of meeting with families and professionals, Ellie found that families today are supported much better than her own birth mother was 30 years ago.
Christoph: It was very sensitively done, a very powerful programme. Ellie did an extremely good job drilling down into some very challenging and complex concepts.
I watched it with my 19-year-old son. He told me that it made him think about so many things that he’d never even considered before. I was really encouraged by this as we want the programme to be the start of a public discussion about these issues. I’m very interested in how we can continue this discussion in the coming months and years.
Are there any key messages that you'd like people to take away after watching the documentary?
Christoph: It's really important for the public to understand the complexities of decision making - and that centres like ours are here to make sure families have access to the best possible information and support during this time. There isn’t a right or wrong decision – it completely depends on each family. You can give different couples the same information and they may come to quite different decisions, it’s important that we respect that.
I also hope that people realise just how extraordinary it is to have a national health service, where so many of the complex tests and support are available free at the point of need. This just isn’t the case in so many other countries across the world.
Bryony: I think the documentary acknowledges the uncertainty of pregnancy. But, at the same time, I hope it provides reassurance that the NHS is here to support us, if ever we face similar issues.
I also really echo what Christoph said about different people in the same situation making different decisions and the importance of this being respected. This is perhaps the most difficult thing a person can go through and something that they remember for the rest of their lives, which is why we try so hard do the very best we can for each patient.
Tell us more about the centre for fetal care.
Christoph: We are one of 18 specialist and six highly specialist fetal medicine units across the country, providing care for pregnant women and their families when there are concerns about the health of their unborn baby or babies – such as potential issues with their brain, heart or lungs. We also support expectant parents where there are complex multiple pregnancies, issues with growth or following complications in previous pregnancies.
We were one of the first commissioned fetal medicine units to be established, in the 1980s, I think. We see around 5,000 patients a year usually following referrals from GPs and midwives.
We are fairly unique in the range of diagnostic tests and specialist treatments we offer, including blood transfusions, laser surgery, and radio frequency ablation. We are fortunate to be in the unusual position of having a genetic counsellor based within the unit itself who offers vital support to our patients. We have a huge range of roles in the unit and work closely with lots of other teams across the Trust, and within the healthcare sector.
We're also a major training centre in the UK and internationally and a world leading research hub, pushing the boundaries of what is possible to improve care for expectant parents and their babies.
I should also mention our Rainbow Clinic, which launched this year to support women to navigate a new pregnancy following a baby loss. Bryony was integral to setting this up.
Bryony: We serve the population of north west London, but we also help women from all around the country who are referred to us for specialist care – both at Queen Charlotte’s & Chelsea Hospital and at St Mary’s.
We’ve significantly increased the number of specialist clinics we offer under Christoph’s leadership. For instance, we now have paediatric urologists and renal specialists who help babies with kidney issues, neurology clinics for babies with suspected brain conditions and counselling from specialists who help prepare families for whatever the future outcomes might be.
This makes quite a large team, including specialists in fetal medicine and paediatric surgery, paediatric cardiology, midwives, genetics teams, neonatal nurses, neonatologists and of course, importantly our admin staff who make the whole thing work!
I’m very proud of our Rainbow Clinic, which Christoph mentioned and was launched earlier this year by my colleagues Dr Usman and Dr Tay. This was the culmination of many years of planning and the efforts of so many people and teams, including inspirational patients who have been key in supporting us with this. Navigating a new pregnancy after previously losing a baby can be extremely difficult for families, requiring both emotional support and careful monitoring for any complications.
Colleagues at Imperial Health Charity have just launched a fundraising campaign to help us enhance the clinic. If we reach our target, this will allow us to introduce a new state-of-the-art ultrasound scanning device and medical probes, make our clinic room more comfortable to families with new furniture and create a new display with up-to-date health information for patients.
Tell us about your research.
Christoph: We conduct early and clinical phase research in some key emerging areas of fetal maternal medicine, often in partnership with Imperial College London, different sponsors and with support from the National Institute for Health and Care Research (NIHR) Imperial Biomedical Research Centre.
There are lots of different studies running at any one time, including the High intensity focused ultrasound (HIFU) trial. This 10-patient study is exploring how high intensity focused ultrasound could be used as a non-invasive treatment for twin-twin transfusion syndrome (TTTS). We hope to publish the result of our first phase results soon.
Another study we’re really excited about is TRUFFLE 2 study, which is led from Imperial and involves 52 other UK and European centres. We hope to be able to determine the best time to deliver babies who are not growing as expected, by understanding better how to carefully balance the risks of poor growth with the risks of early delivery to ensure the best possible outcome for both mother and baby.
There's so many more exciting research projects with various partner organisations, including on whole exome/genome sequencing and the Poppy study on preconception. We also do a lot of imaging research, for instance 3D facial imaging to see if we can diagnose genetic problems at an earlier stage.
You both sound like you’re incredibly proud of your teams.
Christoph: Good clinical services and research are only possible if a team functions really well – if the individuals are enthusiastic, skilled and keen to work together in a friendly and professional way. I'm really pleased that we're friends as well as colleagues. Without these connections, it would be a much less interesting place to work and we probably wouldn't be as productive as we are.
Bryony: I agree – being supported and working well together is very important. It’s what makes it possible to do what is sometimes a very difficult job, with compassion to our patients, our colleagues and to oneself. I’m extremely proud to be part of this team and part of the Trust’s outstanding-rated maternity services.
Your roles can be very challenging at times. How do you switch off when you’re not at work, so you can always be at your best?
Christoph: I see the brain as something that fizzes and pops all the time, so I try to give it space to percolate and recalibrate. This could be spending time making tweaks to my old car or going sailing, which are two of my passions. Or sometimes it’s about sitting still or just being with friends and family, who tend to be great at helping me level out.
Bryony: I have two awesome teenagers who do a great job keeping me grounded! I also like to walk my two naughty labrador dogs along the Pembrokeshire coastline or the Brecon Beacons. Those are my happy places.
Find out more about the documentary and how you can watch it on ITV's website.
