Ruari's Story
A new baby brother
Ruari was born in October 2006 – a brand new baby boy to join the Brown family. Everyone was settling in at home when at 8 days old everything changed. Ruari’s mum Sharyn told us “We were rushed from our house by blue lit ambulance through rush hour traffic to Yorkhill Hospital in Glasgow, over an hour away”.
Unknown to any of them, Ruari had three undiagnosed heart defects. His heart had started to fail. Sharyn remembered how “He arrested shortly after arriving at A&E, was resuscitated and stabilised in PICU”.
What was going on?
Ruari was diagnosed with DiGeorge Syndrome. Just two days later, Ruari was undergoing his first open heart surgery. The specialists warned the family that there was a 1 in 4 chance of Ruari dying during the operation. Understandably this was a very scary time for the family. Thankfully, he came through his surgery and was moved to the Paediatric Intensive Care Unit (PICU) to recover from the operation.
There were added complications after Ruari’s open heart surgery, and he was on the ward for four weeks fighting MRSA. Sharyn recalls how looking up DiGeorge Syndrome on the internet at the time “Was all doom and gloom. Then a diagnosis of missing thymus, which is part of his immune system. All while he was fighting MRSA – a parent’s worst nightmare”.
“Within the first week of him being in hospital we met his cardiologist, his immunologist and a geneticist. So, it was a bombardment of one bit of bad news after another”. It was an awful lot to deal with.
Somewhere to decompress each day
Sharyn was gifted a room in one of the flats owned and run by the House. These were situated just across the street from the main House in Yorkhill.
Sharyn recalled how “It was a strange time for me – I had a two-year-old daughter at home who I hadn’t been apart from – I was torn between being at the hospital with my son and being home with my daughter. Having access to the flat was a lifesaver. Sitting beside a bed in PICU is emotionally draining, sitting doing nothing."
"To have access to a flat where you could decompress at the end of a day was amazing”.
When Sharyn arrived, two other mums were also staying at the flat whilst their children were in hospital. One of them, Wendy, had a 10-month-old daughter about to have open heart surgery.
“While in PICU Wendy’s daughter was in a bed just down from my son – she is a lovely friendly woman who passed on lots of advice and support, we soon became friends” Sharyn told us.
Wendy’s daughter bounced back from her operation quite quickly, Ruari being so young took a bit longer. Soon it was time for Wendy and her daughter to go home, “We exchanged phone numbers and promised to keep in touch”.
Keeping in touch
Whenever Sharyn and her family were in Aberdeenshire, they would pop in to see Wendy and her daughter for “tea, cake and a wee blether”. However, as for many of us, busy lives meant that the two lost touch for a while. Until Sharyn became a member of the ‘Heart Mummies for Scotland’ Facebook support group and the two reconnected!
Sharyn went on to say “In 2019 we found out we were both travelling to Cyprus for a holiday … We arranged a meet up one evening. It really feels like we have never been apart, it’s like catching up with a good friend, we have shared similar experiences and are immensely proud of our children as they have grown up. Wendy has been a great friend to our family over the years, always supportive and friendly”.
“So, the House doesn’t just give a parent a bed for the night – it can create support networks and friendships that last for years”
And what of Ruari now?
Ruari had another heart operation in 2012 when he was nearly six. Again, Sharyn stayed at the House before transferring to the ward. He is waiting for a date for his next heart operation, which will hopefully be the last for some time.
Proud mum Sharyn told us “Ruari has attended local nursery, local primary school and is now in 3rd year at the local secondary school. He is in a lego robotics team with some of his friends, they have won the Scottish heat twice so far – travelled down to Birmingham to compete in the UK final. He has overcome all his challenges in life so far”.
Sharyn went on to say, “We know how lucky we are to have Ruari in our lives and are grateful for the support from his doctors, Wendy and the other Heart Mummies and also from the House”.
We are all delighted to hear that Ruari is doing well, having faced so many difficulties throughout his life. Having his family by his side all the way through will no doubt have helped.
Sharyn also wanted to raise awareness of a charity called Max Appeal that supports families with children with 22q deletion/DiGeorge Syndrome. Max Appeal’s mission is to try to ensure that every person with 22q11.2 deletion lives an independent and prosperous a life as possible. They have a website and Facebook