Today’s post has been 9 years in the making….or three and a half if you want the short version! What is so exciting and has taken so much love and care? Last week was the official launch of Tiny Life At Home! If you or someone you know has had a premature baby, you’ll know just how difficult the transition from hospital to home can be, and with this new web-based resource, we hope that family and friends of preemies in the future will be better informed and put at ease with their transition. Read on for our experience in this important project.
You may know that my first-born, Tristan, was born into what is considered the extremely premature category when he arrived at 28 weeks, still over 11 weeks before his due date. His early birth hit me hard and although I knew it wasn’t my fault (no one knows why he was early), I still felt so much guilt at not being able to keep him safe. But over the past 3 years I have found myself participating in a couple of projects that have made me feel like I was making just a small difference for someone else.
Three years ago I flew to London to participate in a James Lind Alliance workshop where healthcare professionals of all description came together with parents and other vested interests to set the top 15 priorities for future research surrounding premature birth. I wrote a bit about this process, which you can read here.
About 9 months later I went to a TinyLife focus group and they were looking for people interested in a project. At that time I didn’t know what my future held in regards to work or if I’d have time or ability to help, but I put my name forward to Linda Franck, a professor from The University of California, San Diego.
Move forward another 18 months and things started to move; plans were in place, key players were involved from Queen’s University Belfast, University of California, San Franscisco, TinyLife….and little old me.
What was this project, exactly? I’m glad you asked!
Coming out of these 15 priorities I mentioned earlier, one was noting the lack of resources available to help parents transition from hospital to home. When Tristan was in the neonatal/special care baby unit, the hospital staff did everything and were responsible for his well-being. I had a baby, but I wasn’t really responsible for him.
When we were sent home with him, still 5 weeks before his due date, and without notice; just a few hours earlier I had been told he’d be in hospital until he reached his due date, then all of a sudden I had less than 2 hours to contact Phil at work, have him try to get out of work for the rest of the day, drive home for the car seat, and then come pick us up as if he didn’t get there before 4pm it would be too cold outside and they wouldn’t let Tristan out.
Now all responsibility for Tristan’s care was on our own shoulders! The going home packet of information the hospital gave to us was for term babies and wasn’t terribly helpful. What were were to do? How? When? We’d be on our own without pulse-ox wires, breathing monitors, and trained professionals surrounding us. This was scary stuff!
Okay, this was 9 years ago and we didn’t have smart phones and access to wi-fi. Most of what we read were in books borrowed from TinyLife, and from the tiny bit available then on the internet. Fast-forward 9 years, and still there wasn’t much available for this time of change on the internet or elsewhere. The hospitals here in Northern Ireland all give out different information to parents, which makes it all the more confusing.
Tiny Life At Home
This is where this project comes into play. TinyLife was funding a grant to create just such a resource, and my name was on it as the parental adviser. Once the grant had been been successful and Queen’s University approved the ethics, it was all-go for the main players involved.
We all came together and met in Belfast every few months for progress updates on what really was available on the web, and how those resources rated on scales such as the clear scale and the CRAAP Test, among others. Tristan and Kallista attended every one of these meetings with me, and had a good laugh over telling Phil about the names of these scales!
After this research had been done, it was found that there wasn’t a whole lot of information out there, but what was there was very good and a couple of sites stood out. We weren’t going to reinvent the wheel, but rather fill in the gaps and bring all the good information together into one great place.
The small team of researchers and writers started sifting through all of the information and writing up what was needed. Keep in mind that everything on this new site is evidence-based. In my opinion, this is what sets Life At Home With Your Premature Baby apart from the likes of mom-forums, which are good and have their place, but can be more about opinion, not fact. Everything on this site has also been gone over and approved by at least two experts in the relevant field.
At first, you might think that it would be an easy task to put this all together, but to do a quality job of it and keep it based on research and verified, and yet still be easy to read and informative for the average parent (not sounding like a research paper), it takes a lot of effort.
Once the written materials were roughly drafted it was time to bring in the website experts to set up the structure of the site and to start filming. That’s right; Life At Home is not just a bunch of boring text, but also includes lots of short videos that combine the experiences of real families both in the neonatal ward and at home, intertwined with the experts providing best-practice knowledge. And I feel the professionals provide lots of reassurance, which is a really huge comfort for parents.
I found that Nicola Doherty, consultant clinical psychologist, really said a lot in a way that explained just how I was feeling but not able to put into words. It was fun seeing Gillian Anderson, the breastfeed coordinator talk as we met her and had a good laugh way back when. And it stops my heart to see Sanjeev Bali, paediatrician, talk about development and milestones. I am positive he is the doctor that told me one morning that Tristan had a problem with a heart valve (thankfully, that corrected itself by the time he left hospital).
The whole team were so wonderful with Tristan and Kallista and really made them feel a part of the team. I loved the way the doctors when they were around, asked them questions and really paid attention to them. These folks really do love the work they do every day.
Kallista has many times said the Phyl Gargan has a kind heart, as do all of the (mostly) women on the team. It is reassuring to know that these are the people looking out for others and making the world a better place. They have hearts of gold and leave a lasting impression on those they are around.
As for our ‘tiny’ role, it has helped to heal my heart to know that we had a little piece to play in helping other parents in the future so that they can be better informed than we were.
