Matt Roberts didn’t know whether his youngest daughter, 4-year-old Amalie, would make it to her first birthday after requiring open heart surgery just weeks into being born.
The 40-year-old father-of-three and his wife, Sophie, 43, were told by doctors at Amalie’s 20-week scan that she would be born with both a hole in her heart – known as a Ventricular Septal Defect – as well as a rare form of congenital heart disease.
Amalie was Matt and Sophie’s third child, and so the couple felt ‘very relaxed’ going into the scan as they’d ‘done it before and knew what was coming.’
‘In fact, we were so excited that we decided to bring the kids along, so they could take a look at the scan of their new baby sister,’ Matt recalls.
‘When we arrived, everything went to plan. The nurse first saw Sophie and got her settled while I waited with the kids. But five or 10 minutes went by and they still hadn’t called us in – and it was at that point that I started to fear that something might be up.
At that point, Matt requested to go in – which he was permitted to do, but without the kids. There, they sat both him and Sophie down and delivered the news.
‘The appointment was only two days later, but those two days were agony. We had no idea what was going to happen and couldn’t help ourselves but spend every waking hour looking online to understand the condition that Amalie might have,’ Matt adds.
‘When they delivered the full diagnosis, we just had this sinking feeling. We didn’t know whether Amalie would survive.’
The severity of Amalie’s condition meant that without intervention she might not have lived longer than a month, but thanks to life-changing work by the British Heart Foundation (BHF), Amalie is now a healthy and happy four-year-old, who has just started primary school.
On her pregnancy with Amalie, Sophie notes that it was ‘very different’ to anything she’d previously experienced, noting that ‘as we approached Amalie’s due date, we had more frequent check-ins to assess the best treatment strategy for when she was born.’
‘They knew that they had to operate from the moment they found out about the defect. However, it wasn’t until the birth itself that they could work out the process was pre-surgery,’ Sophie shares.
When it came to the birth, the couple were ‘frightened’ but felt ‘in safe hands.’ Amalie was Sophie’s third C-section, as she’d previously had an emergency C-section for her first child and then a planned for her second – but this time around, there were 15 members of staff present.
‘It sounds frightening, but they all made us feel really at ease. They were so calm and professional,’ Sophie notes.
‘Without doubt, the hardest part of Amalie’s arrival into the world was the moments after the birth itself. We were only able to hold her for two minutes before she was whisked away, but all you want as a mother is to hold them, look at them, and understand them.
‘But unfortunately, that time was crudely cut short, so she could be taken to intensive care – and was immediately followed by fear of what was next. It was heartbreaking – really, really horrible.’
The doctors then waited two weeks before Amalie’s surgery, to allow her to accumulate as much strength as possible. First, she was in intensive care for five days before being moved to the Royal Infirmary, where she was ‘deemed stable.’
‘At that point, they decided it was best they gave us a week of normality – a moment of respite when we could take her home, look after her and be a family,’ Sophie says, adding that the family were ‘so grateful’ to be given that week, but it was also akin to a ‘purgatory.’
The surgery was subsequently successful, and the couple ‘couldn’t have been happier’ as they felt they were ‘out of hot water.’
Amalie was still on a lot of medication afterwards though, as she had some kidney damage and so needed to be on dialysis, as well as needing frequent neurology exams.
Then, when Covid hit, the family needed to be ‘incredibly careful’ about shielding – but eventually, Amalie was able to come off her medication. Today, she only needs a yearly check-up.
She’s now just a few weeks away from celebrating her fifth birthday, and her parents describe her as the ‘life and soul of the classroom,’ where she ‘loves showing off the scar on her abdomen to all her new friends.’
‘Matt, her older brother and I all have scars on our body, so she’s learnt that it’s definitely something to be proud of. I’m so glad she’s here with us.’
Matt, who lives in Somerset, says: ‘You can’t put into words how you feel when you’re told your unborn baby will need surgery a few weeks into their life. All you can do is hope and pray that they come out the other side.
‘Without the British Heart Foundation, Amalie simply wouldn’t be here today. The BHF not only pioneered the surgery that saved her life, but BHF professor Massimo Caputo was the surgeon appointed to carry out Amalie’s operation.
‘The team also provided a wealth of support as we went through the process and was on hand to answer any questions. The BHF was – and continues to be – amazing.’
For that reason, Matt and Sophie have since made it their mission to raise as much money as possible for the charity, from putting on art exhibitions, to running ultramarathons. To date, the two have raised £21,000, and they have no plan of stopping.
It comes as new Openreach research reveals almost half of those living in the UK (46%) take the time to volunteer in their communities.
Matt adds: ‘We are forever indebted to the BHF, so we do absolutely everything we can to raise money for the organisation.’
‘A couple years ago, I ran the Cardiff half marathon dressed in a massive heart costume – that was one of the hottest and sweatiest experiences of my life, but I made it.
‘Before that, I ran the Marathon des Sables, a seven-day, 257 km ultramarathon across the Sahara Desert, about six times longer than a normal marathon. That was also pretty hot and sweaty, but entirely worth it as we raised over £15,000 for the BHF.
‘Aside from that, my wife and I have put on art auctions, clothes sales – all sorts. Once you go through something like that, you can’t stop. You just want to keep on giving as much as you can in the hope that others can benefit from their wonderful work.’
‘When it comes to finding the time to do all of this while having a full-time career, I’m very thankful that I work at a business that gives me the flexibility to organise my charity events and support my family as a husband and a father alongside my work.’
Openreach’s research found that 39% said they are more likely to volunteer as a result of work policies such as paid leave – as well as flexible hours and remote working options.
However, only 16% of Brits say their employer offers paid time off for volunteering and charity work.
‘Openreach offers paid volunteer days as an employee benefit, which has allowed me to take time off to continue raising more money – and encourages others to help me out.
‘I’ve just come back from a 10km swim over the weekend, so I’m not sure when I’ll take my next volunteer day, but I certainly have plans for the future.
‘It would be amazing to start getting the kids involved in these adventures as they get older and continue the family fundraising effort. However, the big dream on the bucket list would be to row across the Atlantic for BHF.
‘It’s an absolutely mammoth feat – around 3,000 miles, rowing every day for 2 months straight.
‘But as I say, I have a big reason to keep on going. I’m very lucky to be sitting here today as a father of three wonderful children, and it’s all thanks to the British Heart Foundation. So, I guess… onto the next one!’
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