Looking after brave Lucia and her little heart every step of the way
As part of a new series to document the impact of Ardonagh Community Trust’s (ACT) work to help communities become better, brighter and stronger, we are sharing some of the stories of the people behind ACT’s quarterly Community Grant programme, which provides employees across The Ardonagh Group the opportunity to apply for up to £5,000 towards a charitable project or cause that matters to them.
In the first of this series, we hear from Fiona Pollard and her brother-in-law Rob Pollard (Towergate’s Area Managing Director, London North), who applied for a community grant on behalf of their chosen charity, Little Hearts Matter.
Fiona Pollard, Lucia's mum
We try to live as normal a family life as possible. Day-to-day you probably wouldn’t notice much of a difference between our lives and yours, but our daughter Lucia is an incredibly special little girl.
At her 20-week scan we heard the words that no parent wants to hear – we were told that there was something wrong with our baby’s heart. We then faced an agonising wait over the weekend to speak to a cardiologist who could tell us more about what the future would hold for our first child. That weekend was filled with an anxiety unlike any other.
On the Monday morning we arrived at the John Radcliffe Hospital in Oxford where I had an hour-long scan – the room was practically silent as the doctors studied the images that appeared on the screen. Our doctor finally broke the news to us that our baby had Double Inlet Left Ventricle, which basically means she has half a working heart.
They told us that they did not know how long she would live for and her long-term future was uncertain, and that she would need help physically. At that point we were offered the option to continue with the pregnancy or arrange a termination – an option that was offered completely without judgement. Our doctor took great care to explain the diagnosis and said we could call her at any time if we had questions. I will always be grateful for her compassionate professionalism.
We were left feeling so numb. It was an enormous amount of information to take in and it felt like we were part of some strange TV programme – it was completely surreal.
We returned to the cardiologist after a week and told her that we wanted to continue with the pregnancy. For the remainder of my pregnancy, I had scans every couple of weeks at the John Radcliffe Hospital. It was during this time that I was given information about the charity Little Hearts Matter, who helped to support me during those very uncertain times. I eventually gave birth to Lucia and she was immediately taken to special care.
At six weeks old she was admitted to Southampton Hospital for her first open heart surgery – PA banding. The weeks leading up to the operation were incredibly traumatic, but once the date of the operation arrived and we were in the hospital environment, we were supported by the most amazing nurses who were able to reassure us and calm our fears. Lucia was taken into surgery and we did not see her again for another five hours. She would go on to have a further two surgeries - Glenn surgery at 10 months and Fontan surgery at four-years-old – for each of these operations she was away from us for around 10 hours.
Lucia is now eight years old and has done very well considering her condition. She has to have medication to help her lung pressure and has aspirin daily. She can get tired easily and we have to factor this into all our plans. We don’t go on long walks, she uses a wheelchair, which she goes in when she becomes tired. But most of the time we are a typical family. If she misbehaves she gets told off, she does ballet and tap and musical theatre, but when she gets tired she does get blue lips – her heart condition is always there in the background.
The doctors have told us she will live a normal life with some limitations. They just don’t know how long her heart will last – she might be in her 50s, it might be earlier, we just don’t know. We have learnt to live with a life of uncertainty, but we know that one day she may need to have a heart transplant. At the back of our minds is the fact that we just don’t know how much time we have, so we make sure we have those family holidays, the days out – we want to make the most of our time together.
Lucia knows she is unique. We use her wheelchair to take her to school so that she has as much energy as possible for the day. Her school friends obviously see this difference, but she is not self-conscious, and we are very lucky to be part of a very supportive community.
She is a very outgoing, bubbly and determined little girl – she certainly does not come across as a weak or sick child. After her last operation she had a drain which the nurses told us would have been painful and uncomfortable for her. She didn’t complain once, she didn’t ask when she was going home, she just quietly carried on with her hospital school and got on with it. We are just so incredibly proud of her.
Throughout it all Little Hearts Matter has been there supporting us every step of the way. It’s a small charity and we know everyone by name, it’s like being part of an extended family.
One of the most important ways Little Hearts Matter has helped us is by connecting us with other families who are going through the same thing. We can talk about medication, about the operations. We meet up as families and Lucia is able to meet other children who are just like her. There are lots of events and tea parties – the social side of the charity is amazing.
We have private parent chat groups where we offer support to one another. Some of the parents who come to the group really don’t know what to expect and are afraid for the future, but when we show them pictures of our older children living happy full lives, it helps to take some of that fear and isolation away.
The charity has also ensured that we have all the information we need. The people who work there are absolute experts in this field and knowing that we have that support behind us at every step is incredibly reassuring.
As a small charity Little Hearts Matter does not receive government funding, so we are always trying to do our best to fundraise for them. We’ve held a summer ball which raised thousands, we had an afternoon tea which raised over £6,000 in a single day, and we will continue to help as much as we can because we know how important this charity is for its families.
We are incredibly grateful for the community grant the charity received from Ardonagh Community Trust. This grant is of huge importance as it means that the charity can continue to be there to help families just like ours. At the end of the day, nobody should have to go through something like this alone and Little Hearts Matter provides that vital support to families when they need it most.
I’d like to say thank you to the team at Ardonagh and to my brother-in-law Rob for giving us this platform to talk about our experiences and to share the work of Little Hearts Matter more widely.
Rob Pollard, Lucia's uncle
Area Managing Director London North - Towergate
You don’t always see what my brother and sister-in-law do or what they go through as a family. If you saw my niece Lucia, you would not know that she only has half a functioning heart. I remember my brother calling me to tell me there was something wrong after the 20-week scan. When you’re faced with this kind of news you just don’t know what to say or what you can do to help. We try to help when needed, but I also wanted to do something tangible to help by supporting their charity.
From my point of view, it’s all about my niece Lucia and helping a charity that has given her so much support. Little Hearts Matter has given my brother and my sister-in-law the opportunity to speak to parents with children with the same condition and to meet the families at organised activities so they can share what they are going through.
The charity is funded completely by donations from the public and when I heard that Ardonagh Community Trust was offering community grants, I knew immediately that I wanted to help Little Hearts Matter. When I applied for the grant, Little Hearts Matter wanted to increase awareness of the charity so that they could help even more families and they put the money towards improving the website.
I feel incredibly fortunate to have the backing of my company so that I can support a charity that has so much meaning for my family. It makes me incredibly proud – it’s been a tough few years with the pandemic and getting the call to say we’d been awarded the grant really helped to give us all a lift.
When you are dealing with challenges that come so close to home you have that need to do as much as you can to help. Finding support from the organisation you work for and being able to help a charity that has done so much for your family is just so incredibly valuable.
Suzie Hitchinson, Chief Executive of Little Hearts Matter
Little Hearts Matter doesn’t receive any government funding and we have to fundraise £400,000 annually to offer each of the services we currently provide to all the children and families who reach out to us. When people and organisations fundraise for us it’s absolutely essential to the continuation of our services.
When the charity began its work in 1994, a lot of families who came to us were frightened and in desperate need of information. They were scared of what the future would bring for their children, and that remains the same today. Families still come to us frightened, confused and feeling very alone. We start our support from that moment.
We provide an individual service based on the needs of our families – we are there for everybody at every stage of their journey whenever they need us. We help our families understand the condition and the treatment options available. We can also talk about everyday life and help our families connect with one another.
It’s an amazing thing when businesses understand the importance of supporting charities and their local communities. To know that they are able to see the bigger picture in the world around them and for them to extend their responsibilities beyond the remit of their company is just so wonderful.
The financial support is obviously important but the amount of awareness it generates is also of huge importance because long-term, this helps to inform society so that we can build a more tolerant and compassionate world for our young people.
We would like to say a huge thank you to Fiona, Rob and Ardonagh Community Trust for their kind support and for helping us to reach even more families in need.
ACT Community Grants support charities Ardonagh colleagues care about
Ardonagh Community Trust (ACT), the registered charity of The Ardonagh Group, is here to support causes within local communities become better, brighter and stronger
Community grant applications are open to all colleagues across the Group worldwide to request up to £5,000 (or equivalent in local currency) of funding for a charity or a community project close to their heart.