Case study: New mum shares experience of taking part in research study for premature babies

Heather Bell’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.”

Watch Heather's video on our YouTube channel.

Click here for the full video transcript.

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.

Health and care research can only improve and save lives with the help of people like you. Find out which research studies you can be involved in and how you can take part in research by visiting the Be Part of Research website.