Melanie Harding holds a photograph of baby Riley Drever. Photo / Alan Gibson
Melanie Harding took her baby to the doctor 16 times but says she was treated like an "anxious mum".
Weeks later, 4-month-old Riley Drever was dead.
Four years on, the hospital at the centre of the row has been ordered to apologise.
Health and Disability Commissioner Anthony Hill has foundWaikato District Health Board did not provide Riley with services of reasonable care and skill before the baby died of respiratory failure in October 2015.
But Harding says an apology is inadequate compared with the pain of losing her child and she plans to lodge a claim with the Human Rights Review Tribunal.
In a decision that will be published by the HDC in November, Hill criticised the DHB for not properly investigating the cause of Riley's breathing difficulties and stridor - a high-pitched wheeze.
This could have been done through a nasendoscope to check Riley's throat and voicebox.
A GP had referred Riley to the tertiary hospital in Hamilton on October 3 with suspected laryngomalacia, a birth defect that causes a floppy larynx and which, in a small number of babies, can require surgery to correct.
In the paediatrics ward, a senior medical doctor requested an ear, nose and throat (ENT) consultation.
Hill said the DHB did not stick to its own policy when an ENT registrar, a more junior doctor, responded to that request.
Waikato DHB's policy is that if a senior doctor requires a consultation from another speciality, it must be done by another senior doctor.
Riley was referred for the "scope" two days in a row but it never happened.
Instead, the morning after Harding asked for her son to be transferred to Starship hospital in Auckland, she was told Riley was being discharged.
Hill was critical of the fact Waikato DHB could not explain why the scope was cancelled or which doctor made that decision.
The name of the doctor who documented sometime after 3am on the day of discharge that an ENT ward round had occurred, was illegible.
That was compounded when a paediatric registrar wrote at 9.50am that Riley had been "seen by ENT" and was "not for scope at [this] point" and could be discharged.
Hill found poor documentation around key decision-making points, including the decisions not to scope and to discharge.
"There were a number of staff who poorly documented their care across both the paediatrics and ENT teams.
"Riley was discharged without a formal diagnosis or a plan for specialist follow-up care, either with ENT or paediatrics."
In its response, the DHB said Riley was never "severely clinically compromised" and tests supported the view he was not unwell, his condition was improving and there was no "health reason to be in hospital".
But Hill made adverse comment about oxygen level testing on Riley, which returned unreliable results and should have been repeated.
He also ordered the DHB inform the HDC of progress on a new shared-care arrangement between paediatrics and ENT, provide its policy on oxygen level testing, report on steps taken to reduce the risk of similar events, prove better documentation of infant growth measurements and audit 50 cases of shared care of children between the two specialities.
Harding, 27, disputed some of the evidence provided by the DHB and said she was made to feel like an over-anxious mother, despite suffering seizures at the time from a lack of sleep.
"They just put it down to maternal exhaustion. I wasn't sleeping because my baby was blue all the time and I was scared he was going to die.
"All it would have taken is for one person to have taken me seriously. If I could make one legislation it would be that maternal instinct overrules medical degrees because no one knows a child like their mother."
She said the harrowing ordeal had not subsided since she found Riley dead in her bed that morning.
"Four years on, the pain is still so physical that it's felt in every cell of my being. It's there and it never goes away. And there's no rectifying it."
Since Riley's death, Harding and her partner had separated. Their eldest child, Sophie, now 6, was asking questions about her little brother, including why he died.
To compound the tragedy, Harding cannot have more children without IVF but is on an 18-month waiting list with her new partner.
Harding said the HDC decision was not justice for Riley.
"The Government is protecting doctors and DHBs through ACC. People's children are not statistics. They're lives, and they matter."
The DHB said it could not comment on the decision before it was published but extended its condolences to Riley's family and apologised for their distress over his loss.