A Berlin Heart baby transplant wait is, for now, a story of recovery rather than loss. Macs Green, an infant from the UK, was given end-of-life preparation advice by doctors after suffering two cardiac arrests and being diagnosed with dilated cardiomyopathy. Instead, he received a Berlin Heart, the only ventricular assist device of its kind approved for babies and children with severe heart failure, and his parents say he is ‘absolutely thriving’.
From end-of-life planning to smiling at his parents
Macs had appeared to be a healthy, typical baby before his cardiac arrests. He was admitted to Bristol Royal Children’s Hospital and placed on an extracorporeal membrane oxygenation (ECMO) machine, which keeps blood oxygenated when the heart and lungs cannot manage alone. His parents, Dylan and Catrin, were told to prepare for the worst.
Then doctors identified Macs as a candidate for the Berlin Heart EXCOR, a pneumatically powered ventricular assist device (VAD) that mechanically pumps blood around the body. The device effectively takes over the heart’s function, buying time for a suitable donor organ to become available. It comes in two formats: INCOR, which supports left ventricular flow, and EXCOR, which provides comprehensive heart support.
The change in Macs after the procedure was, by his father’s account, immediate. ‘It means he can come off the drugs which have been sedating him. Since then, he’s a completely different baby,’ Dylan said of his third son. ‘He’s smiling, he’s responding to us. Before now, he’s just been a small baby lying on a bed.’
Catrin described the experience as ‘like having our baby back’, adding that Macs was ‘absolutely thriving’. How long the family will wait for a donor heart remains unclear. The wait can stretch to years.
The Berlin Heart baby transplant pathway: reach, results and real risks
The Berlin Heart was manufactured in Berlin and has reshaped paediatric cardiology over several decades. The first European patient received one in 1990; the first American patient followed in 2000. By 2014, 1,500 Berlin Hearts had been fitted to children and infant patients. In 2012, a toddler set a record by living with the EXCOR for two and a half years while awaiting transplant.
Today, according to Berlin Heart, EXCOR Pediatric systems are in use at more than 170 specialised centres worldwide. That breadth of adoption is one measure of the device’s durability as the leading option in this age group, particularly because no comparable alternative exists for the smallest patients.
UK outcomes data give further context. A Berlin Heart analysis of the EXCOR Pediatric experience in the United Kingdom recorded an overall survival rate of 84%, according to Berlin Heart’s published data. For families like the Greens, that number carries real weight, it means the odds, while not certain, are meaningfully in Macs’s favour.
The device does carry documented risks. A study published in the Journal of the American Heart Association found that 29% of children treated with EXCOR as a bridge to transplant experienced a neurological injury. That figure is a genuine complication rate, not a footnote, and clinicians managing Berlin Heart patients monitor neurological status closely as part of standard care. For Macs and his family, that risk sits alongside the 84% survival figure: a real trade-off, not a clean triumph.
None of which changes the immediate picture at Bristol Royal Children’s Hospital. A baby who was days away from palliative care is now responding to his parents, smiling, and waiting (with the help of a pneumatically powered pump attached to his chest) for a heart that will let him go home.
