Busselton infant with extremely rare heart disease flown to Melbourne for lifesaving surgery

A 12-week-old Busselton baby has been rushed over east for life-saving surgery after being diagnosed with one of the rarest heart diseases in the world. Sinead and Alex Forster had their first child Edward — affectionately known as Teddy — in June this year and soon learned their bundle of joy had been diagnosed with left ventricular non-compaction cardiomyopathy, which affects only eight in one million people and occurs when pieces of muscle extend into the heart’s left chamber. The couple rushed their baby to Melbourne Royal Hospital where he had open heart surgery on August 18. He remains in the hospital and is awaiting a heart transplant. MRH is the only facility in Australia that will perform the surgery on children with the disease, but Teddy may have to wait up to two years. Mr Forster received the same diagnosis at the age of seven and overcame all odds after initially being told he could potentially have just 12 months to live. Doctors said there was no congenital link to explain why both father and son had the disease. Teddy has already had a nine-hour surgery to receive a Berlin Heart pump to function as a mechanical heart out of his body and keep him alive temporarily while he awaits the full transplant. His parents, who have now dropped everything to relocate to Melbourne and are looking for a home there, have been told the waiting time for a transplant could be six months to two years. The couple are staying in Ronald McDonald temporary housing. Teddy’s grandmother Liz McGovern said the family had been hit hard. “Since (Teddy) went into hospital it’s just been a blur,” she said. “They had to leave everything, and it’s just terrible we can’t be there to support them through it. “Sinead is just the most calm, most kind and beautiful lady but for her to have her son and husband and for us to have a son, and now first grandson, nephew go through this . . . I can’t even describe it.” A GoFundMe appeal so far raised almost $25,000 towards the family’s relocation, medical costs and general finances. Ms McGovern said the parents had been “overwhelmed” by the support they have received so far. “Given how tough things are for people right now with rising costs of living and people doing it tough, they are still going out of their way to donate be it money or hopes and prayers or offering to do things it’s so greatly appreciated,” she said. “We’re very lucky.” To donate, visit gofundme.com/f/teddys-big-adventure.