(Left -Right: Robert Mitchell, Susie Mitchell and Max Mitchell)
The Mitchell family walk into Heartbeat House as if they were visiting a close relative, a home from home. And that’s because that’s exactly what it is for them. For more than thirty years, mum Susie, dad Robert and their son Max have been making the journey from Gloucestershire to Southampton because Max has 22q11 deletion which has led to significant health issues- including congenital heart defects. Max was just six months old when he had his first major operation. It’s been a very difficult journey for the family.
“By six months old we were in crisis.” Max’s parents, Susie and Robert Mitchell said. “We only ended up in Southampton because we were sent to Cheltenham Hospital, then to Bristol and all the while no one could tell us what was wrong and all the time poor Max was becoming more and more ill. It wasn’t until a medical friend said we should get a second opinion, and that’s when we found ourselves in the city. It was a terrifying and frustrating time”
Coming under the care of Southampton General Hospital was a turning point for the family. “When we met Dr Salmon our lives changed forever. He was compassionate, kind and we felt listened to and in safe hands.” Robert said: “But when you’re caring for a very sick baby, its so much more complex than just dealing with the medical aspect- which is so hugely overwhelming and traumatic in and of itself but there are other, almost more practical things you have to think about too. Its things like, where are we going to sleep? how do we keep money coming in or how do you even think about work?”
Susie added: “We would often sleep on the floor or curled up in chairs. There would be a bit of rush from the parents who all had babies on the ward to go and grab a mattress to place on the floor because there were so few.”
This was more than thirty years ago, in 1992. It was the same year the charity itself was coming into being. Heartbeat and the Mitchells journey have been somewhat intertwined. As Max grew, beating the odds and overcoming all obstacles - showing enormous strength and resilience the charity grew too.
Heartbeat House, the charity’s 25-bedroom ‘home from home’ was opened in 1995 and proved to be somewhat of a lifeline for the Mitchells who were still having to regularly make the journey from Gloucestershire to Southampton .
Dad, Robert said: “Heartbeat House truly is a home from home. I don’t know what we would have done without it. And not just back then, it’s been here throughout most of Max’s treatment. Its another constant in a world which often changes quickly as Max’s health can be erratic. It’s the somewhat small things that the House offers that means the most. It’s a safe place, it’s a safe place to cry. All your energy is spent exclusively focused on your loved one so being here helps support you through it. Forgive the term but it’s heart-breaking.”
“We know we can come back from ICU at 3am and we just don’t need to worry. There are other people staying here that just know what you’re going through. A small smile or a reassuring nod but that unspoken word is hugely comforting. We’re so grateful for it.” Added Susie.
Max is now 31, an aviation enthusiast with a dazzling personality. He had another major heart operation last year. Resulting in spending more time on the Young Adult Cardiac Unit (E2) which was funded by the successful ‘High Five’ appeal run by Heartbeat in partnership with University Hospital Southampton NHS Foundation Trust. Max said: “It’s really reassuring. I really like E2. My anxiety can get bad but with E2 and with knowing my parents are close its all really helps. I’m very grateful.”
The whole family are great supporters of Heartbeat and would urge others to do the same.
Robert said: “If anyone is thinking of getting involved with fundraising or supporting a charity, please think of Heartbeat. Its not just Heartbeat House, it’s the research they do too. The 3D heart modelling project is truly saving lives. Its remarkable.”