Claire Holliday, from Birmingham, is mother to 4 year old Vinnie who is waiting for a heart transplant. They’ve been in and out of hospital throughout the last year. Claire talks about her experiences and how the charity Little Hearts Matter has been a lifeline of support.

Claire carried her four year old son Vinnie to his heart operation not knowing if he’d survive.   It was the height of the pandemic and due to Covid rules her partner Ben couldn’t be with them.  It was heart-breaking as Claire gave Vinnie a kiss from Ben not knowing if they’d see him alive again.   The children’s heart charity Little Hearts Matter has been with the family offering them vital support every step of the way.

“It was the wave of the pandemic, I was in hospital with Vinnie and told there was a good chance he wouldn’t come through the next stage of open-heart surgery and will need a heart transplant to survive.  I had to process this devastating news on my own as lockdown rules wouldn’t allow my partner Ben to be with me.  I was floored but I needed to hold it together for Vinnie.   I locked myself in the toilet and immediately called Suzie the CEO at Little Hearts Matter.   I was on my knees.  Suzie listened, advised and calmed me.  I just wanted comfort from someone who understood.   I really don’t know how I would have coped without this support.  Little Hearts Matter is literally a lifeline.  I honestly can’t thank them enough.” 

As society gradually begins to resemble normal, Little Hearts Matter is putting the spotlight on the families they support who continue to experience the day to day fear and isolation that comes with a life threatening and incurable heart condition.   Their normal will always be different.

Vinnie is on the waiting list for a heart transplant.  His family have been told they could get the call anytime from now to three years time.  Their phone is always with them and a bag is packed ready to go.  Vinnie has never been on holiday and his life is now on hold as he waits for the call for his new heart. 

The last year has been particularly overwhelming for Vinnie’s family as they’ve tackled lock-down and frequent hospital visits.  Claire says ‘Shielding Vinnie has been challenging. It’s been devastating and sad that Vinnie had to be pulled out of nursery for over a year.  He’d only attended twice after his open-heart surgery, then Covid hit. He has really missed the social aspect of interacting with peers. As a mum to a single ventricle child we are always more cautious about his care but our stress levels have soared in the pandemic.”   

Vinnie has needed to go to hospital for check-ups every 6 weeks and they often go weekly. This has been worrying as they’re taking an extremely vulnerable child to a hospital where exposure is high. They went from being in their own bubble at home to mixing with the public at large at the hospital and a range of hospital staff. They put things in place to not expose Vinnie e.g face shield , gloves and lots of hand sanitizer .

Vinnie has managed extremely well under the circumstances. He’s actually taken a huge interest in Covid and the importance of keeping safe and trying to understand why he can’t play with friends, go to nursery and the importance of him wearing a face shield when out.