The Helliwell family face an agonising wait over the next few years, after their second son Jackson picked up a life threatening virus that cannot be operated on.
Diagnosed with dilated cardiomyopathy, the now-seven week old boy will have to heal his own heart, be on a concoction of medication every day and avoid any sort of illness.
“The thing with this whole condition is they don’t know which way it’s going to go. A third of kids will fully recover from it, a third will kind of bobble through life and live a pretty mediocre life on medication and a third of children won’t make it,” says mother Brenda, who had just spent five weeks in Auckland at Starship Hospital and Ronald McDonald House with her newborn, and husband Dion. “It’s not going to be a days and weeks thing; if his heart is going to heal it will take time. We were hoping to see some change but we’re stoked he didn’t go backwards.”
The virus “was random” and has resulted in an enlarged heart that has been weakened, meaning it cannot contract to the ability that it should.
Dion noticed Jackson was feeling unwell after his breathing rate increased, he was no longer interested in feeding and his skin colour turned pale. The midwife was called and she immediately sent Jackson to hospital “She took one look at him and called the hospital and said ‘guys get on your way’. “The A&E nurse was standing there saying ‘come on’ so that was an indication that things were pretty bad. Up until that he seemed like a healthy baby.”
Jackson was then picked up by the Life Flight plane and taken straight into Starship Hospital, where he has spent more than half of his life. The Helliwell family say they have been overwhelmed with the amount of support they received at Ronald McDonald House and from the local community. “It’s been so humbling that so many people were moved by Jackson’s story and what we were going through. We received many thoughtful gifts.”
The fact that Jackson has been sent home is a good sign, according to the family, who say there will be more tests done during the week. “He is under the watchful care of the paediatrician in Nelson Hospital and there will also be a Starship specialist visit him.”
Some everyday tasks will have to change for the family and there will be hand sanitizer at the door for visitors while sick guests are not allowed to visit. “The goalposts certainly moved big time for us but we’re adapting and recognize with love all the people who are behind us and supporting us.”