During surgery Shiloh's heart will be taken out, she will be placed on life support, and surgeons will make her heart whole again before they place it back inside Shiloh.
“Basically it is making it into one whole heart. So that's pretty scary.”
Charlotte says she and her husband will go for a long walk during the surgery as they will be unable to sit still.
The worry takes a toll on the whole family, who have good days and bad days,
“I've had a few visits to the doctor myself” says Charlotte who says her family have been a major support.
Her mother started up a Givealittle page back in November. So far almost $8000 has been raised.
“I have days where my heart breaks watching her play, then days when I am so grateful she is mine. I go up and down a lot.”
Shiloh's paediatrician advised her parents once this surgery was over that is not the end of it.
“There will be lifelong check-ups for Shiloh and maybe further surgery at three or four years old. She is never going to be sporty because she does not have the respiratory ability.
“All her little developments are major milestones for us even if they are a bit delayed. We think everything she does do is amazing after everything she has been through.
“I look at other children the same age who are talking and almost walking. Shiloh doesn't do that yet. We are happy if she rolls over once or twice — we're like, ‘wow!'”
Any money raised will go towards helping Shiloh be comfortable, and towards her care.
For example, she overheats a lot, so an air conditioner to help keep her cool would be good.
Charlotte says she would also love to get a device that goes under her cot mattress to monitor her breathing.
“She is a delicate wee thing.”
At six weeks old Shiloh had her first surgery at Starship Hospital in Auckland. A band was put around an artery to reduce blood flow, as one of the issues was that blood was going in the wrong direction.
A nasal gastric tube was also fitted, which Shiloh still has today.
She is also tube fed because a food aversion causes her to vomit even at the smell of food.
Charlotte and Neil were both shown how to give Shiloh food through a machine they have at home, and also how to re-insert the tube if it gets pulled out.
They expect to be away from home for a month after the surgery on February 27.
Neil works as a carpenter at McCannics, who have been “very supportive” about giving him the time off he needs,
Charlotte says New Zealand is “amazing” what it can offer medically, but that some medications are not covered by public health.
Plus being away from home, and work, for a month, is costly.
They're not “out there” people, says Charlotte. Asking for help is hard but already they have been humbled by those who have donated.
Charlotte's mum sent out a few emails late last year and the family was stunned and excited when they got $5000 from Mazda, which makes up a big chunk of the $7882 already raised.
■ To donate to Shiloh go to
