We were living in Whitby when our youngest daughter, Bridget, was born apparently healthy in 2017. At six weeks old we noticed that she’d stopped growing and two weeks later we were in James Cook Hospital in Middlesbrough being told Bridget has a heart murmur and needed to go to Newcastle’s Freeman Hospital for further assessment.
The murmur was a result of several issues with Bridget’s heart. The two main blood vessels leaving her heart were swapped over. This meant that blood wasn’t being pumped around her body properly. She also had a large hole in her heart which was what was helping to keep her alive.
The day we were transferred to Freeman Hospital was the day we found out about The Sick Children’s Trust. The charity runs Scott House which is a ‘Home from Home’ for families with children in hospital, where they have a place to stay, somewhere to eat away from the ward and not too far from the child’s bedside. It was a huge relief as Whitby was a two hour drive away and it meant both me and Sam could be with Bridget while she went through her first major surgery at just eight weeks old. It also meant I was able to stay on the ward with her, while Sam stayed at Scott House. My parents, who live in the South East, came up to Whitby to look after our eldest, Caitlin, which meant we didn’t have to worry about her missing us too much and we could focus on Bridget. With any sick child it doesn’t just affect the parents, it has an impact on the whole family; siblings, grandparents and it is so important to have somewhere the family can be together. Caitlin missed me, she missed her baby sister and having somewhere she could come and spend time with us in Scott House meant she was involved.
Bridget’s first surgery was to put a band around the pulmonary artery which took the pressure off her lungs and allowed them to grow. Following that, she had a full reconstruction of her heart which is when Scott House became even more important to our family. It was December and we were there for a month. A month away from home is hard, especially when we had our eldest daughter at home but luckily Caitlin could come for sleep overs every now and then which was nice.
Both Sam and I could be there at the hospital and only ever be a few minutes away which was the most important thing anyone could’ve given us at that time. We could have a break from the ward and cook a proper meal and watch normal tv and get a bit of distance. When Bridget was in intensive care and neither of us could stay on the ward, and it was more intense, it was particularly beneficial to have Scott House where we could switch off to get a bit of respite.
“A month away from home is hard, especially when we had our eldest daughter at home.”
Since her second surgery, we have moved down to the South East and Bridget has had a pacemaker fitted. She was two years old at the time. It’s not unheard of for a child of her age to have a pacemaker, but it is by no means common.
When it’s your child’s life, and something as important as looking after her heart, keeping with the same doctors is something we considered very important. Freeman Hospital is a day’s drive from our home and knowing that when we get there, we can stay at Scott House makes that journey much more bearable. A place that is familiar to us.
“With home being two hours away I wouldn’t have had the support from Sam that I needed.”
Scott House is such a valuable resource for us to have. With home being two hours away I wouldn’t have had the support from Sam that I needed. We really appreciate having Scott House there and just being a few minutes’ walk away rather than hours. When Bridget had her pacemaker fitted, we stayed there for two weeks – I can’t imagine what we would’ve done for two weeks without it.
Our family has since been fundraising for The Sick Children’s Trust, my parents especially. They have done two big cycle challenges raising around £2,000. They saw first-hand just how much of a difference having a ‘Home from Home’ made to us.
Bridget is doing incredibly well now, and although we go back to Newcastle for check-ups we don’t think she will have surgery for another few years until she needs her pacemaker updated. If it weren’t for the scar on her chest you wouldn’t know. She is a typical energetic three and a half year old – although she does get tired more quickly, not that she would ever admit that!
Louise Maurais, Caitlin and Bridget’s mum
