Mel and Karl Houltham, of Dunedin, had no idea their 13-day-old baby was experiencing heart failure, but knew something was wrong.
The 3-month-old is home in Dunedin with her relieved parents, having spent five weeks in Starship Hospital, in Auckland.
None of the doctors had seen heart failure in a newborn, and at first, did not know what was wrong.
After cardiomyopathy had been diagnosed, a specialist in Auckland carried out a literature review to see if it had happened previously in a newborn. Mr Houltham understood the review had not turned up a comparable case.
Mrs Houltham had a normal pregnancy, and there was no family history of heart problems.
The family had spent a normal day with their newborn and toddler Beckett (1) when her parents noticed Honor was ``completely white'' and would not feed. Her breathing was laboured.
A couple of hours before, she had been sick, and as it looked a little ``unusual'' in colour, they had been keeping an eye on her.
They took her to the Dunedin Urgent Doctors and Accident Centre, which alerted Dunedin Hospital's paediatric team and sent the family to the emergency department.
``Within the space of three hours she went from a normal baby to a very sick baby,'' Mrs Houltham said.
In the emergency department, doctors worked to get a line into her vein, but it was difficult with reduced blood flow.
By now ``screaming hysterically'', her body was shutting down.
The relief was palpable when doctors managed to enter a line for fluids.
``You kind of realised that she was in a position where they had bought some time to do some tests,'' Mr Houltham said.
Suspecting it was heart-related, visiting Christchurch neonatologist Kiran More ordered an echocardiogram and electrocardiogram, and the family was transferred to Starship the next day.
Mr Houltham accompanied the baby in Starship's plane, along with an intensive care registrar and a nurse. Because of space restrictions, Mrs Houltham flew separately.
The first eight days of the five-week stay were in Starship's paediatric intensive care unit.
The couple weighed in on the controversy over Ronald McDonald House.
They disagree with public health advocates who are trying to block the charity from having a presence in the rebuilt Dunedin Hospital.
Having a place to stay in Auckland just a few hundred metres from Honor was crucial, they said.
The pair were full of praise for every aspect of their care in Dunedin and Auckland.
``People need to trust the system, it's pretty good, as much as people talk negatively about it,'' Mr
Houltham said.
And parents needed to trust themselves.
``As weird as it sounds, a mother's intuition is huge,'' he said.
``If alarm bells are ringing in your head just put them in the car and go,'' Mrs Houltham added.
If they had put Honor down to sleep, she would not have survived, the couple said.
While extremely rare, heart failure in babies probably happened more than was thought because exact cause of death was often not established, Mr Houltham said.
Honor is taking medication for her condition, and while the long-term impact is unclear, her parents are delighted with her progress.
