Original article posted on NIHR website.
Heather's wife was visiting their newborn son, Robin, in the neonatal intensive care unit (NICU) at Southmead Hospital when she was approached about taking part in the "SurfON (Surfactant Or Not)" study. The study, which is running at North Bristol NHS Trust (NBT), is investigating whether it is better to give surfactant, a substance that makes it easier for babies to breathe, to premature babies when they first start to need help with breathing, or wait to see if they improve without it.
Robin was born 6 weeks premature and babies born 2 to 6 weeks before their due date may have breathing problems after birth, which can be severe. This is because babies born early often do not make enough surfactant or their natural surfactant does not work properly. Many of the most premature babies are given a dose of surfactant routinely but there has been no research into babies born 2 to 6 weeks early with breathing problems.
“The trust researchers approached my wife in a respectful and calm way, clearly taking into account our situation. They went over the study and gave her some information to bring back to me. They also came to see me at the delivery suite where I was recovering and arranged to see me when I was stable enough to go to the NICU unit. They explained the study and answered my questions.”
Heather has worked at the NIHR Clinical Research Network West of England for 4 years as a Research Delivery Manager.
“Having worked in the sector for over 10 years, I have always been pro research. I know that research is vital to improving our understanding of conditions and can lead to better prevention and treatment.
“At the time, our son Robin was on Continuous Positive Airway Pressure (CPAP), because his early birth meant his lung function was limited and he needed support. I felt the best case scenario would be that being on the study would help Robin and his lungs, the most likely worst case scenario was that it wouldn't help but there would be useful treatment learnings for the future.”
“The research staff were incredibly knowledgeable, friendly and supportive. We felt well informed throughout and they even came to visit when they were around the NICU unit. I had not heard of the study treatment before and it was interesting to read the information on why the study was being conducted.”
The SurfON study is randomised, with babies either receiving early or later treatment.
“Robin was randomised to early treatment which went well and he was almost immediately able to come off of CPAP and breathe unaided. This is such a milestone for premature babies and the study helped us to reach it. I am so grateful to the study team and NBT for offering this study as an option.
“I am sure many may think that it is not the best time to approach parents, directly after an unexpected and traumatic birth but by doing so we were given another option and were glad to be approached. It was an extremely stressful and emotional time for us but we were so happy to be able to make our own decision about taking part.
“If you’re considering taking part in research you may be experiencing a lot of uncertainties but if you can take away one certainty, it is that by doing so you will be helping someone somewhere. Whether that is yourself, if you have a positive outcome or others in the future who can benefit from the study findings. Even studies that show treatments are not effective are extremely useful and can mean someone does not put themselves through a treatment that is unlikely to help.”
Video Transcript
Descriptive transcript
0:03 - Audio
So, I found out about the study when we gave birth to my son who was 6 weeks early. Robin was struggling with his own breathing and he had to have CPAP breathing support.
0:09 - Onscreen text
Heather Bell, Mum of Robin, a SurfON study participant.
0:09 - Audio
He was transferred straight to the neonatal intensive care unit for specialist care and there were some research nurses who were working on that unit at the time. I wasn't able to be there at the time because I was still in the delivery suite recovering but my wife was able to see our son straight away and the research nurses came up to her and approached her and talked her through the study. They also gave her some information so that she could take that away and bring it back to me in the delivery suite and then they followed up and came to see me on the delivery suite so that they could talk through the study and make sure that I understood it.
So I had a really positive experience with this study and it was looking at whether surfactant could be used to help breathing with children that were born prematurely.
I think it's routinely given to babies that are born really early, Robin was 6 weeks so they were looking at children that were born kind of closer to their due date to see whether it would still have a positive impact. For us it was really successful, he was randomised into a group where he was able to have the surfactant early rather than later and then after he was given the surfactant it was within a day he was able to come off of his breathing support and was able to breathe normally by himself which was amazing and that meant that it was much easier to do things like hold him closer and to really bond more with him which was wonderful.
It felt really good for me to be able to support research because I work in research, I've worked in research for about 10 years and I see the positive impact that it has so I felt like I was able to kind of give something back to research and obviously amazing that Robin could take part in something so early.
So I would say to anybody that's thinking of taking part in research that it can be such a hugely positive experience and that you can have an impact straight away or you may not have an impact straight away but it could help other people in the future. It's really good to remember that these studies come forward because we need to know whether there's evidence behind what we do or we need to know whether something is going to help people in terms of their treatment or in terms of prevention and we'll never be able to answer those questions if people don't take part in research. It was great for me to have the choice to be able to take part in research and to make that choice also for Robin. I think sometimes we can think that it might not be the best time to ask people whether they want to consider taking part in research but for me it was really important that I was given that decision myself and that we were able to understand everything about the study and then obviously take part in it. I've taken part in research myself so now the whole family's taken part in research which is brilliant and I think that if we want to have a more positive, healthy future together then I think research is the way forward.
2:56 - Title frame
Life-changing research starts with people like you.
www.bepartofresearch.nihr.ac.uk
2:56 - Closing frame
The NIHR supported SurfON study is run by the University of Leicester and coordinated by the National Perinatal Epidemiology Unit Clinical Trials Unit (NPEU CTU) at the University of Oxford.
A huge thank you to all the parents and babies who have taken part in the study