“If we didn’t get the second opinion, Sophie would not be here,” Jackson said.
Sophie Neho pictured soon after her birth at 24 weeks and two days’ gestation on April 9.
Tiny but mighty, Sophie weighed just 580g (1lb 4oz) when she was born at Auckland City Hospital on April 9.
“She was breathing on her own, she was kicking,” Jackson said.
The new parents were warned that Neonatal Intensive Care Unit (NICU) babies usually had a “honeymoon phase” in their first week, before deteriorating.
“She did pretty well and then around day 10 they discovered she had necrotising enterocolitis [NEC], so she needed bowel surgery, and she’s got a stoma.”
NEC is a serious gastrointestinal problem that inflames intestinal tissue and may cause a hole in the intestine. It mostly affects premature babies, according to the Cleveland Clinic.
A stoma is a surgically-created opening made on the abdomen when the normal bowel or urinary tract isn’t working properly, which allows waste to leave the body and be collected in a disposable pouch.
Octaviah Jackson and her daughter Sophie Neho pictured having their second cuddle together after Sophie was born extremely premature.
Although this was a setback, Sophie’s response to this early challenge buoyed the couple as complications from her early arrival continued.
“Yeah it is,” Jackson said, when asked if it was hard supporting Sophie’s fight.
“But we’ve always had quite a lot of hope because … when she needed her stoma done and she had NEC we were told she had basically no chance of surviving, and she did.
“She thrived through the surgery … and then we found out stoma bags [in NICU babies] was a really common thing.”
The biggest challenge had been the heart condition Sophie was diagnosed with on July 14, two weeks before what would’ve been her full-term due date, Jackson said.
An echocardiogram revealed the infant had pulmonary vein stenosis (PVS), a rare condition where the veins that carry blood from the lungs back to the heart are narrowed.
“We were told only two other babies in New Zealand had this condition … and that basically Sophie was too small to have treatment.”
Sophie Neho started her life needing a ventilator, before moving on to a CPAP (continuous positive airway pressure) machine (pictured). She’s since improved further and is now receiving oxygen at a high flow rate, which is sometimes varied to a low flow.
Weekly echocardiograms monitored how much Sophie’s veins were narrowing, before the couple were told on August 8 their daughter was unlikely to respond to treatment.
“They told us she was palliative and only had two weeks left.”
But Sophie’s parents refused to give up.
“I started googling and looking into Facebook groups and found a mother in Auckland whose son was diagnosed [with PVS] in 2020 – he’s 15 years old with this condition,” Jackson said.
She found a cardiologist with PVS expertise at Boston Children’s Hospital who reviewed Sophie’s medical notes and scans, something Jackson claims only occurred after “it took the NICU weeks to send them”.
Sophie Neho has pulmonary vein stenosis (PVS), a rare condition where the veins that carry blood from the lungs back to the heart are narrowed.
The US hospital wanted to fly Sophie to Boston for treatment but Nicu staff said the infant was too unstable, Jackson said.
She said in response to her international search for a second opinion, Sophie’s Auckland cardiologist asked their manager for a second opinion before telling the couple the manager agreed Sophie would be highly unlikely to respond to treatment.
But Jackson pushed back, because they didn’t know who the manager was and the response wasn’t in writing.
“We eventually got the second opinion back and [they] also recommended treatment.”
Jackson felt the couple had been brushed off with the original advice.
“It was almost like they wrote her off – we got given a [baby loss memory] book and things to grieve her.
“If we didn’t get the second opinion, Sophie wouldn’t be here … that’s one of the things I think about every day – how many other families are going through this and didn’t know there’s a second opinion out there?”
As Sophie has become stronger, her parents Octaviah Jackson and Reece Neho have been able to interact with her more, including giving her her first high-flow bath last week.
Health New Zealand leader Dr Mike Shepherd told the Herald that staff were “very pleased that Sophie is doing well”.
“We are extremely supportive of whānau advocating for their children’s care and getting second opinions from overseas, especially for rare conditions,” said Shepherd, who is Health NZ’s group director operations for Auckland.
“We have full confidence in the skill and expertise of our clinical teams. We recognise that, while the recollection and experience of Sophie’s care journey may vary, we are all working toward the same goal – the very best outcomes for her and her family.”
They were happy to have further discussions with Sophie’s family about their experience and “opportunities to improve our services”, he said.
Sophie began treatment last month, with her pulmonary veins ballooned on September 22, followed by an operation to close her patent ductus arteriosus (PDA), Jackson said.
This usually closed shortly after birth, but if it didn’t it could let oxygen-poor blood move the wrong way and cause heart failure and other complications, according to the Mayo Clinic.
Sophie’s pulmonary veins will be ballooned again on November 6, a procedure her parents were initially told would need to take place every six to eight weeks, Jackson said.
There was a possibility the intervals may later increase to 10 to 12 weeks, and a type of chemotherapy is also being administered to limit tissue regeneration that could narrow Sophie’s veins, she said.
“She was on a ventilator at the start of her life, and then she got onto CPAP [continuous positive airway pressure]. Now she’s on high flow and she’s doing periods of low flow as well, so she’s not needing much oxygen at all.
“She’s doing amazingly well – she’s surprising everyone.”
Octaviah Jackson and Reece Neho say their “funny, cheeky, strong and determined” daughter Sophie loves looking at books and is “so nosey no doctors could talk about her without her looking at them”. Sophie was born at 24 weeks gestation six-and-a-half months ago and remains in hospital battling complications related to her early arrival.
They’re also hopeful Sophie’s stoma will eventually be reversed “hopefully before she comes home”.
That date remained unknown, like the prognosis for their little fighter, who now weighs 4.69kg.
“We don’t know [Sophie’s prognosis] at the moment. We’re hoping to go [from NICU] to the respiratory ward soon and we’ll probably be making a lot more progress.”
The Dargaville couple, both 23, have been living in Ronald McDonald House as they stay near Sophie’s side, with ongoing emotional and financial hardship as they spent months away from their community and Neho’s job as a builder.
“Everything’s been a bit stressful but I guess we’re just trying to stay on top of it. We definitely learnt the hard way by crashing and burning out, but we’re just making a little bit of time in the day just for us to get food or a 10-minute walk just to get out of the hospital.
“And making friends in the NICU has helped a lot because it just makes you understand you’re not as alone as you think you are.”
Their “funny, cheeky, strong and determined” girl, who loved looking at books and was “so nosey no doctors could talk about her without her looking at them”, made it all worthwhile.
“She’s been really strong throughout this whole thing for such a little person”, said Neho.
“I’m really proud of her.”
The little girl they’d at one point picked out a funeral home for had given them the greatest lesson of all, Jackson said.
“We’ve learned not to give up. Just take things day by day, and keep fighting.”