World Heart Day: Mother who lost 8-week-old son shares story to inspire heart research funding

An inspirational mum from Merthyr Tydfil whose son tragically passed away at eight weeks old due to a heart condition will take on the Cardiff Half Marathon this weekend to raise funds for us. 

Ruth Coleman, 37, gave birth to twins, Trystan and Macsen, in December 2021, however after two days, doctors noticed a swishing sound coming from Macsen’s chest and decided to run some tests.

The doctors told Ruth and her husband Gavin, that Macsen had a complex congenital heart condition called Truncus Arteriosus. People born with truncus arteriosus have one large blood vessel that leads out of the heart, instead of two, meaning the heart has to work harder.

He was immediately taken by ambulance to Bristol Royal Hospital for Children. Ruth said, “We were told that he would need open heart surgery to help repair the issue - he was just 12 days old - but he recovered incredibly well. We were able to leave the hospital a few days after Christmas, and the cardiac team in Cardiff told me that they’d never seen a cardiac baby recover so quickly after surgery.”

'We knew something was wrong'

Macsen returned to the family home for five weeks after the surgery, when unfortunately his health took a turn for the worse. “One afternoon he was crying and began jerking. The sound of Macsen’s cry was very different so we knew something was wrong. We phoned an ambulance, while our neighbour, a gynaecologist who has knowledge of CPR in babies, came round and performed CPR when his condition worsened and he collapsed.”

Macsen had suffered a cardiac arrest, and by the time they reached the hospital in Cardiff, he had sadly passed away. Ruth added, “We were heartbroken and angry to lose Macsen so suddenly, especially when he made so much progress after the surgery - I wouldn’t wish this experience on anybody. As we grieved the loss of our son, we knew that there was nothing that the doctors, emergency services, or anyone could have done differently.” 

“Without the work of our medical and surgical team, including BHF-funded Professor Massimo Caputo, we might not even have had eight weeks with him; they gave Macsen a chance.”

After Macsen’s death, Ruth embarked on a mission to raise funds in his memory. They have organised participation in a number of running events, building “Team Macsen” and seeing their fundraising efforts go from strength to strength.  

Marking World Heart Day

The Coleman family are marking World Heart Day (29 September) this year by organising a group of around 50 people who will be running at this weekend’s Cardiff Half Marathon events, hoping to raise £10,000 for us.

More than 25 pupils from Ysgol Gymraeg Santes Tudful, including Ruth’s eldest son Tomos (six), will be running Saturday’s 2.4km Junior Fun Run, with a further 25 runners set to take on the Half Marathon on Sunday.

“Fundraising running events has really given us a good focus. When you’ve lost a child, it feels very difficult to be a mother to them; you don’t feel useful. Through these events Gavin and I have found something specific that we can do for Macsen. It is great to have local children involved and the sense of purpose we have gained has been massively beneficial to my mental health throughout this time.”

Alongside the £10,000 target, part of Ruth’s mission is also to raise awareness of the seriousness of heart conditions. “Until it directly impacted our lives, I was very unaware of many of the challenges – I didn’t even know there were specialist heart wards for children until we had to go there. We thought we had two perfectly healthy baby boys and then we were thrown into a world we were petrified of, and if more people knew about heart conditions, I am sure it would help.”

“When I’ve spoken to people about Macsen, many are blown away when learning that such a small child had cardiac issues. They very much associated the work of British Heart Foundation with older people, but we know it can affect anyone.”

Head of BHF Cymru, Adam Fletcher said: “Ruth has shown great bravery in sharing her family’s experience, and raising funds for more groundbreaking research that could help save and improve millions of lives.  I will be cheering on Ruth, Tomos and “Team Macsen” as they take on this weekend’s incredible challenge.