“We couldn’t bring her back.”

Hearing those words, Jenny and Mihkel Zilmer knew their baby was gone. Their desperate three-month battle to keep their beloved daughter Lumi alive long enough to make it back to Starship Hospital in Auckland was over.

Lumi died last November in an Estonian hospital where doctors and nurses had battled frantically to keep her alive that day, repeatedly bringing the baby back to life until her tiny, fragile heart finally gave up the fight.

She was born with hypoplastic right heart syndrome, leaving the right side of her heart small and malformed, a rare congenital defect picked up during a 33-week scan, and one of her pulmonary valves had not formed so pulmonary atresia was a secondary diagnosis. At 33 weeks’ gestation, it was too late for Jenny Zilmer to fly back to New Zealand.

Medical staff told the Zilmers their daughter would need three open-heart surgeries before she turned 3, the first – and riskiest - when she was just a week old. Throughout her life she would likely survive on very low blood oxygen.

“It was just a huge shock. You never think it’s going to be you and suddenly it is,” Zilmer says.

Her daughter was delivered by caesarean at 39 weeks, at first a healthy-looking baby. But later that day, as the PDA (patent ductus arteriosus) valve closed, Lumi’s heart could not pump enough oxygenated blood and she began to turn blue, setting off an emergency response. Doctors inserted a PDA stent (to keep the blood vessel open), negating the need for open-heart surgery in the first week.

Jenny Zilmer with Lumi on the day she was born. Photo / Supplied

That night, Lumi looked so fragile – on a ventilator, blue and cold, tubes everywhere, Zilmer says. But by the next morning her baby was breathing on her own and was strong enough to breastfeed.

 “I thought then she had a chance. We thought ‘Yes! We can do this’.”

‘We missed our chance’

In those first few weeks, Lumi was feeding well and gaining weight. Zilmer wishes, in hindsight, that they had flown back to New Zealand when Lumi was thriving but their cardiologist advised against it. It is this moment in Lumi’s short life that Zilmer regrets the most.

“They said we would be told when it was safe to travel,” Zilmer says. “Only with hindsight do we now know that this was as stable as Lumi was ever going to be and we missed our chance.”

Baby Lumi was doing well in her first weeks of life. Photo / Supplied

The couple’s aim was to keep their daughter stable enough to make an emergency medevac flight home to Starship. Jenny Zilmer’s sister Katie and later her father, fishing expert and author Geoff Thomas, flew to Estonia to help look after Lumi and their 3-year-old daughter Nora, before returning to New Zealand. The Zilmers needed to get back to work so they could save money for the medevac flight and relocation.

At first, Lumi thrived but looking back on those 12 weeks, Zilmer believes Estonian medical staff at the hospital missed “red flags”, and that although they followed their protocols, some of those protocols were flawed. Having talked with Starship doctors, she thinks Lumi would have been monitored more closely in New Zealand, and that her daughter’s chance of survival would have been greater. Lumi would have turned 1 this week had she survived.

In Estonia, alarm started mounting in Zilmer’s mind in the first week of her daughter’s life when her cardiologist went away on summer break and no-one was assigned in her place.

“We asked if we could speak to a cardiologist. We have a heart baby here, we’re about to be sent home. We were petrified.”

Zilmer, 36, wants to share her daughter’s story for several reasons. She is convinced Lumi’s odds of survival would have been greater if she had been under the care of Starship’s paediatric cardiology specialists from the day she was born.

She wants others to be aware of the risks of having children, particularly those with health issues, in a country where the expertise may not be of the same standard as New Zealand, and where there is no family support and limited social services.

Kiwi fishing expert Geoff Thomas flew to Estonia to be with his granddaughter Lumi. Photo / Supplied

Zilmer also wants to encourage parents everywhere, including Estonia, to question doctors if they have doubts about their children’s medical care.

“We didn’t feel able to question the doctors in Estonia at the time. This would have been disrespectful in Estonian culture so I felt like I had to silence my concerns.”

‘She was gasping for air’

At 10 weeks old, Lumi had the first of a series of panic attacks. After vomiting up a milk spill, Lumi started to cry until she was gasping for air.

“She started to go a bit blue and we were completely caught out because no one had told us this kind of thing could happen.”

It took several hours for Zilmer to calm her daughter down and after a scan she was reassured that Lumi was stable. In hindsight, Zilmer says the gasping episode was another missed red flag. She understands the breathing attacks marked the beginning of Lumi’s deterioration and that in Auckland she would most likely have been admitted to ICU in Starship to be monitored until her next procedure.

In October, Katie Thomas, knowing the family was desperate to get Lumi to New Zealand, talked to friend Jaimee Lupton, co-founder of Monday Haircare, about crowdfunding to help raise the $100,000 needed for the medevac flight. Lupton came on board immediately, kickstarting a Givealittle page and approaching the New Zealand Air Ambulance Service to organise an urgent medevac.

Lupton and her fiancé, Zuru’s Nick Mowbray, donated $40,000 between them. Lupton shared Lumi’s story on her social media, as did others, and within two days, 365 Kiwis had donated $85,000 of the $100,000 needed for the flight.

Jaimee Lupton and Nick Mowbray donated generously to help bring Lumi to Starship in Auckland. Photo / Supplied

Lupton told the Herald on Sunday that “Lumi’s Aunty Katie” had been a dear friend since high school, and she wanted to help in any way she could.

“After losing a baby myself a few months prior I fully understood the situation they were facing. I was distraught to learn Lumi had passed before she made it home. It shook me to my core.”

It was a grim time in the Zilmer household. Jenny Zilmer and Lumi were isolating upstairs because Mihkel and Nora had caught a winter infection, potentially endangering Lumi. They talked on the stairwell and Mihkel sent food up.

Zilmer says the “incredible” messages that accompanied the Givealittle donations, often from people they didn’t know, kept her going.

“It was a light in those days.”

Heavily booked flights meant the earliest the medevac could be arranged was late November. Due to uncertainty caused by the war in Ukraine, the plan was for an ICU doctor and nursing team to meet the family in Stockholm, Sweden, where a row of seats on a commercial flight would be converted into a mini ICU.

The flight would go via Dubai where Lumi would be cared for at the airport’s specialised medical centre during an eight-hour stopover before flying to Auckland. Lumi had a New Zealand passport; the money was in hand; they just needed to keep her well until the flight.

‘Incredible new hope’

In a rare development, Estonian specialists discovered that the right side of Lumi’s heart had started to grow. She would still need major surgeries but it raised the possibility that, in the future, both sides of her heart would function.

But two days before her death, Lumi had another panic attack again, causing her to gasp for breath. Jenny Zilmer rushed her to hospital but Lumi was discharged two hours later and again sent home.

With still two weeks to go before the medevac, Lumi was booked to have a procedure which involved inserting a catheter into her heart to widen a hole between the left and right atria to help produce oxygen-rich blood.

Jenny Zilmer remembers that day in November as if it was yesterday. She smiles – the only time during the interview – at the memory of an ultrasound scan Lumi had. In those few minutes the baby was at her happiest and liveliest.

“She was smiling at the cardiologist and babbling away. She was very active. Everything looked stable.”

Jenny Zilmer with a photo of Lumi who died last November, aged three months. Photo / Michael Craig

Two hours later Zilmer was sobbing over the body of her dead baby.

An hour earlier, nurses had tried three times to get an IV line into the baby’s wrist or foot. Lumi screamed; pain, bright lights, strangers’ faces. She started to have another panic attack, turning blue and gasping for air. Zilmer was told to go back to her room to calm her baby down.

“I was doing everything I could, singing to her and walking around holding her. I felt her ribs starting to go in and out. It was something that hadn’t happened before and I knew that it was the beginning of respiratory distress.”

‘She’s gone again, we’re working on her’

Then Lumi went still. “I looked down and I saw that her eyes were glazed over. I ran out into the corridor and shouted in Estonian ‘not breathing!’”

An orderly rushed in, took Lumi to a procedure room and started CPR. A panicked Zilmer wondered why her baby was not transferred straight to ICU, one floor down.

Later, medical staff said Lumi had uttered a small cry so they thought she was recovering. But things weren’t going well. Zilmer could see nurses fumbling unsuccessfully to get an oxygen machine working. She remembers screaming, “Hurry up, help her, you have to help her.”

A cardiologist arrived and instructed staff to rush Lumi down to ICU.

“I could see that she was either dead or unconscious but I thought ‘there’s absolutely a way to fix this, she’s not going to die, that’s not how this happens.’”

"Heart" baby Lumi died three months after she was born. Photo / Supplied

Mihkel Zilmer arrived at the hospital and they sat together outside ICU, waiting for news. Lumi had suffered a cardiac arrest, they were told; it had taken a long time to resuscitate her but she was breathing and stable.

Thinking Lumi would soon be in her arms, Jenny Zilmer went back upstairs to their room to eat some snacks.

“I was breastfeeding and I really needed to eat. I wanted to be ready for her.”

Mihkel Zilmer called the cardiologist for an update.

“She’s gone again. We’re working on her,” he was told.

Later, much later, a nurse appeared, and simply said, “You’re needed downstairs.”

The tone was quite different this time, Zilmer says.

“There was no rush suddenly.”

‘We failed you’

Outside ICU the head doctor and a psychologist were waiting.

“I just knew at that point.” Doctors had tried repeatedly for 90 minutes to resuscitate Lumi each time her heart stopped.

“She came back first for five minutes then less and less.”

Zilmer remembers how still their baby looked, lying on the table where staff had been desperately trying to keep her alive.

“It was only a couple of hours before that she was wriggling around and having an ultrasound and smiling. ”

They took turns to cuddle her, Mihkel Zilmer whispering “We failed you, we didn’t leave soon enough.”

The day peace arrived

Lumi died on a Friday, at 11am on the 11th day of the 11th month, Armistice Day, the time and day in November when peace was declared in Europe, bringing World War I to an end in 1918.

That weekend Jenny Zilmer sat outside the state morgue in Tartu, clutching Lumi’s wool blanket.

“No one told us that it [the morgue] would be locked over the weekend.”

She sobs as she tells of wanting to put the blanket over Lumi, her “cold” baby due to her poor circulation.

“It felt wrong to have her alone in a cold drawer. I sat outside the building so I could feel close to her.”

Lumi was always covered in layers of wool to keep her warm. Photo / Supplied

Knowing that the Givealittle funding could no longer be used for the medevac flight, Zilmer messaged donors and offered to refund their donations. No one asked for their money back. The Zilmers say they can’t get over the generosity of Kiwis.

The moment Geoff and Katie Thomas heard the news of Lumi’s death they caught a flight to Estonia. Together the family had a small ceremony before Lumi’s body was cremated, the day that snow came unusually early in Tartu.

“Lumi means snow in Estonian,” Zilmer says softly.

We’re leaving on Lumi’s flight

Afterwards, the Zilmers couldn’t bear to stay in Estonia any longer and decided to leave on what they had come to call “Lumi’s flight”. They had moved to Estonia from Amsterdam in 2018 to help support Mihkel Zilmer’s parents, who were both suffering from ill health. They couple had met nine years earlier when they were studying music at the Conservatorium van Amsterdam.

Back then they thought Estonia, a small country on the Russian border with a population of just 1.36 million, would be a good place to raise children. The country offered generous maternity leave payments and they believed the health-care system was world class.

But looking back, Jenny Zilmer says, there were remnants of the Soviet Union’s occupation from 1940 to 1991, both in the state of the hospital, the culture and attitudes.

The hospital had no specialist paediatric cardiology ward, unlike Starship, and when Lumi was admitted with a cold virus, she was put in an infectious diseases ward which Zilmer describes as a relic from the Soviet era. Paint was peeling off the walls and water was dripping in the corridor.

Zilmer shakes her head at the memory of the lack of support offered in Estonia.

“You’re just sort of left to your own devices. It’s horrendous.”

The day Lumi died, the Zilmers went back up to the ward to collect their baby’s car seat and clothes, and left.

“We were just sent home in silence. Just nothing.”

Nora Zilmer with her baby sister Lumi. Photo / Supplied

At home, they told Nora doctors weren’t able to fix Lumi’s broken heart and that she had gone up to the stars. Not knowing what else to do, they played Lego together. But Jenny Zilmer wasn’t coping, distressed and in pain from engorged breasts.

Mihkel went back to the hospital to get some sedatives for his wife.

“He had to go back to ICU where Lumi had died. They gave him a couple of Diazepam [wrapped] in tin foil.”

‘They treated us like their own’

Zilmer wants to highlight the amount of support available in New Zealand by comparison. In Auckland, she says, they are lucky enough to have help from charities Kenzie’s Gift and Heart Kids New Zealand.

“They’ve stepped in and treated us like one of their own,” Zilmer says.

“Coming into this environment where there is just so much help, it’s that bitter-sweet thing because Lumi never got to experience any of it. It feels so unfair.”

Settled in a home in Auckland’s Oratia, their family gathered for a private ceremony to remember Lumi, releasing white balloons into the sky. Four-year-old Nora is attending kindergarten, while Jenny Zilmer works as a writer for a Dutch publishing company, and her husband continues to work as a music composer for film.

Air Ambulance Service CEO Annabel Toogood told the Herald on Sunday her team, who had worked for weeks to organise Lumi’s medevac to Starship, were devastated to hear she had died unexpectedly.

Starship Children's Hospital in Auckland. Photo / Greg Bowker

Zilmer believes Starship doctors would have pre-empted Lumi’s deterioration with a care plan, and procedures would have been done at an earlier stage. She also believes that Starship’s mortality rate in the first year of life for children with Lumi’s heart condition is lower than the global rate.

Starship would not comment on Lumi’s case management because the baby was not in the hospital’s care.

A Te Whatu Ora spokesperson for Starship said children with a single ventricle (only one pumping chamber) were managed at Starship by a multi-disciplinary team of specialists. The management and outcome vary significantly depending on the exact heart anatomy, and the medical team provide individual accordingly.