My Story

My Story

The birth of a baby is a cause for celebration, the happiest of times for parents as they welcome their new little bundle of joy into the world and their family. However, for the mums and dads of the over 6,000* babies who are born premature or sick in Scotland every year, the happy expectation of taking baby home, instead becomes a fraught time filled with anxiety, family separation and stress. Here, mum Sarah Clark shares her experience on how a new video messaging platform provided her with much-needed comfort during her own dark days and explains why she hopes it will soon be available to all families across Scotland…

Skye at just a few weeks old in hospital

“My second child Skye was born ten weeks premature on 7 February this year. When she was only five weeks old she suffered a very difficult intubation [the insertion of a breathing tube into the trachea for mechanical ventilation], a result of her lungs and windpipe being extremely underdeveloped. Skye went into arrest and needed full resuscitation… it was absolutely terrifying. We live in Scone, in Perth and Kinross, and I gave birth in Ninewells Hospital in Dundee but after this incident the decision was made to transfer Skye to the Royal Hospital for Children in Glasgow, the largest state-of-the-art neonatal intensive care unit in Scotland, but also a 120-mile round trip from our home.

It was absolutely the right decision as Skye needed the additional specialist care that Glasgow was able to offer compared to our local hospital, but the prospect of being so far from home, and away from my husband Matthew and my eight-year-old daughter Chloe, was petrifying. I had no idea where I would stay or how long I might be away from my family for. The situation was frantic and distressing but at the same time, Skye was so ill, all I could really focus on was my baby and getting her the care that she desperately needed.

Skye now bouncing with health

I arrived at The Royal Hospital with Skye at 9pm at night not knowing what to expect, however my fears were soon put to rest as soon as I met the staff who were absolutely incredible. They arranged for me to have a room near the ward that first night and then afterwards they organised my accommodation at the on-site Ronald McDonald House. The level of care that the team there offer parents is just on another scale and I’ll always be so grateful to them for making a dreadful experience easier to cope with. The staff go out of their way to look after the entire family, e.g. offering parents additional advice about various funding they can apply for (the financial implications are alarming too in terms of travel and accommodation costs) and thinking about siblings when they come to stay and visit – there is an on-site children’s cinema, indoor and outdoor play areas and activities for children provided by the Glasgow Science Centre.

To try and keep family life as normal as possible for Chloe, Matthew and I agreed that he would stay at home during the week and I would return home for one night at the weekend. Our lives soon fell into a completely different home-life pattern and by the second week of my stay the situation had really started to get to me. I was missing Chloe and Matthew terribly and felt very isolated, although I really appreciated the support offered by RMCH which meant I could stay near Skye. I had terrible anxiety about leaving her side, even for a short time, especially after the trauma of watching her having to be resuscitated more than one time.

One evening, unable to sleep, I went back to the neonatal unit at about 11pm and began to chat to one of the nurses. She asked me if I was aware of a new secure video messaging platform which they were piloting and explained that the Unit was the first in the UK to offer parents a trial of vCreate, which allows nurses to send on-demand progress updates of babies on the ward – a huge comfort and reassurance to mums and dads who just cannot be at their child’s cotside every minute.

Nurses recording a progress video update for parents

As they say, pictures paint a thousand words and it was a real revelation for myself and Matthew to now be able to log into a secure account using our iPad or smartphone to see videos of Skye being feed or just watch her sleeping and know that she was safe. It helped relieve so much anxiety over Skye for our entire family. The nurses would record footage during the night and I could wake up, log in immediately to see that she was just fine. There were other families with a baby on the ward from as far away as Inverness who were travelling much further distances than us. For those families, or perhaps dads working offshore, it must be so extremely difficult to have to be separated from your baby for days, maybe even weeks at a time and the regular daily updates can provide so much comfort. The next best thing really to being right by their side.

After a four-week stay in Glasgow, Skye was discharged back to Ninewells at ten weeks old and we finally brought her home on April 15 – her original due date! She’s still on oxygen at nighttime, but otherwise she’s doing brilliantly. After all the support and help we had received, Matthew and I wanted to give something back and felt that the best way to do this was to fundraise to help bring the vCreate system to the neonatal unit at Ninewells so that other local parents could have the same consolation that we had in difficult circumstances. On August 20 we took part in the Kiltwalk from St. Andrews to Dundee, raising just under £2,000. I really hope that vCreate becomes a daily part of the nurses’ routine in every neonatal intensive care unit. Not only Scotland but the rest of the UK too. The nurses only upload videos when they have time, it doesn’t distract from their care of the babies on the ward, but what it does do for so many parents and families is provide a truly priceless gift at a time of great emotional turmoil.”

*Figures provided by Bliss Scotland

One of the most difficult challenges which the parents of a premature baby face is that they may live a considerable distance from the hospital. As a result, visiting the Unit to be with their child as often as they’d like can be difficult as they may also need to continue to work and care for other children. This can be an extremely stressful time for mums and dads who would really value being able to see their baby’s progress. Dr Neil Patel, Consultant Neonatologist at the Royal Hospital for Children in Glasgow, spent some time researching to try and identify how new technology might help.

Neil said: “The idea originally came from a parent of one of our patients.  He uses personalised video in his work to connect with clients and asked if we could send him video updates of his own baby. We then asked more families who all told us there is nothing more reassuring than actually seeing their baby. They thought video was a brilliant way of keeping them up to date with non-clinically sensitive updates when they were away from the hospital.”

It was also critical that videos could only be accessed by the baby’s parents. Ben Moore, vCreate founder explains: “Parents are given a vCreate Viewer Licence that allows access to videos of their own child only. As more videos are created a story is formed of the child’s road to recovery. The parents can then take the videos with them when the child leaves the unit as a memento. The videos are then permanently deleted from the system in line with data protection policy. Although it may sound complex, from both staff and parent’s point of view, it’s really simple to use.”

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