With their mama, Jenny, hailing from Auckland, and their 'Issi’ Mihkel from Estonia, Nora and her sister Lumi were born in Estonia but were New Zealand citizens from birth. When Lumi was diagnosed with Hypoplastic Right Heart Syndrome in the third trimester of pregnancy, Jenny and Mihkel knew that Starship hospital was the safest place for her. It was too late in the pregnancy to travel, so they started making plans to relocate their family to New Zealand as soon it was possible for Lumi to travel safely.
‘Lumi was born a fighter’, Jenny explains. ‘We were told to expect an open-heart surgery within a week of her birth, but a stent placed by catheter on her first day of life was sufficient to stabilise her. She surprised everyone when she had the strength to breastfeed in the ICU within 12 hours of the procedure and came home stable a week later.’
Lumi and her proud big sister were able to spend time together and get to know each other. ‘When you get a severe diagnosis like Lumi’s, those images you had of your children bonding with each other, playing together... you have to let go of them a bit, because you don’t know if you’ll get there. But we did, we had three months at home together.’
Although being monitored by a caring team of doctors in Estonia, Mihkel and Jenny wanted to get Lumi to New Zealand where she could be treated by the more experienced pediatric heart specialists at Starship. ‘We knew the stent wouldn’t last as she grew, and the situation was a ticking time bomb. We fundraised for a medivac flight with NZ Air Ambulance, and thanks to the incredible generosity of New Zealanders and friends from around the world, we were able to book it.’
The family were preparing for their relocation when Lumi started to show some worrying symptoms. Just two weeks before her flight, she had a sudden cardiac arrest and despite many attempts the ICU team were not able to resuscitate her.
‘Her death was a huge shock for us all, including for her Estonian medical team. Her prognosis had been really positive - we just couldn’t wrap our heads around it. We left her body at the hospital where she was being prepared for an autopsy and went home to Nora. I don’t know how we managed to explain it to her, somehow the words just came out as they needed to.’
‘We felt so alone and so helpless. I had been breastfeeding, and we were left to figure out how to get my milk to stop on our own. Unlike in New Zealand, there was absolutely no community support available. We decided we just had to make the call, and get our family - with Lumi’s ashes - to NZ where we’d feel more supported. We travelled on the same flight we’d planned to take with the Air Ambulance team. It helped to feel like we were getting to a better place, but at the same time, the rush to leave Estonia meant we didn’t have time to really register all that had happened. We didn’t have a funeral. For Nora, I think that rush to leave behind all she had known, coupled with the trauma of her sister’s death... it was a huge upheaval for her.’
Once settled in New Zealand, Mihkel and Jenny met with the pediatric heart team at Starship. ‘We talked it all through, and the specialist made clear that they would have treated Lumi very differently had she been in their care. At Starship, she would have been an inpatient under careful monitoring, and would have undergone preventative procedures to give her heart more stability as her body grew. She didn’t have access to that level of care in Estonia, and getting that information added another layer of trauma on top of what we’d already experienced.’
‘Those early months in New Zealand were a blur. Nora was around a lot of very adult conversations and huge emotions, particularly after the meeting at Starship. Of course, we tried to keep things lighter when she was around, but we didn’t always manage. I don’t think it’s talked about enough just how difficult it is to parent a living child when another has died.’
Nora’s experience with Kenzie’s Gift
When Nora turned four, her parents began noticing some red flags. ‘It was so hard to know whether to be concerned – impossible to know, really. She was having huge emotional swings and was very quick to anger. She had developed an alter ego through whom she said and did some things that were harmful to herself. We were feeling stuck and worried.’ When they heard about Kenzie’s Gift, and spoke with triage manager Dr Freyja Mann, there was a huge sense of relief.
‘It felt like the weight had been lifted off our shoulders. Knowing that you’re going to get professional help means the world in this situation. Once in therapy, Nora seemed to feel calmer and more supported. She found ways of expressing her big emotions and self-regulating when she needed to. But I think the biggest impact was on us as parents - we were so worried about whether she was doing ok, what trauma she was carrying. Lizy stepped in and we knew that as a professional she would help Nora with these tough experiences in a way that we didn't have the tools for.’
Nora’s mama Jenny was so moved by what Kenzie’s Gift had done for them, and so passionate about getting the right support at the right time to other families facing similar challenges, she began helping to create texts and resources. Now, Jenny works as a writer for Kenzie’s Gift.
‘Nora’s five now – she has started school and she’s settled, sociable and has plenty of self-confidence. She loves to learn and loves to make friends. She still has her moments, like we all do. But she has the tools to work with her feelings, and that makes all the difference.’
