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Heather and Robin's story: taking part in the SurfON study video transcript


'Heather and Robin's story: taking part in the SurfON study' - video transcript

YouTube link to video - this video is 3:08 minutes long

Video description - The "SurfON (Surfactant Or Not)" study 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. Heather's son, Robin, took part in the study after being born 6 weeks prematurely. In this video, Heather shares their story of taking part in research.

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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.

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