Luna & Whānau

Kia ora e te whānau! Today, we have the pleasure of speaking with Luna, an incredible 8-year-old, and her Mum, Liv. We'll discuss Luna’s journey with a particular CHD (congenital heart defect) and how they've navigated through it together as a whānau.

 

Luna and Liv’s journey was one of the first heart kids stories I found online after having Ruby’s diagnosis. Seeing Luna and her whānau living a beautiful full life together and more “normal” looking than I expected was a massive relief to me. I would often message Liv and other heart Mum’s multiple questions, flooding with anxiety not knowing what to expect on this unexpected journey. Luna is an absolute hero and a well known champion in the heart kids world and rightly so. She’s battled wars she never should of had to and shown what a warrior she is through and through. Beautiful inside and out, Luna you’re an inspiration to us all. 

 

I hope through this interview and the future interviews I will be doing I’ll be able to create more awareness about these issues many whānau in Aotearoa face and that we can help other’s going through similar things feel less alone. Mātauranga (knowledge) is key! 

 

Let’s kōrero!

 

1. For Liv: Can you tell us who’s in your whānau? And then a bit about Luna's medical condition and when it was diagnosed? 

There is me, my husband Donovan, Luna and her younger brother Gray. Luna’s diagnosis is HLHS plus some (hypoplastic left heart syndrome with severe aortic stenosis, VSD, PDA, dysplastic pulmonary valve with mild PR and moderate tricuspid leak). In layman’s terms, the left side of her heart is underdeveloped/missing with artery & valve issues. We found out at around 35weeks gestation. She's had four open heart surgeries so far with more to come, we took her home on palliative care when she was 3 after severe complications following her Fontan (4th open heart surgery). We were told we had 3-4 weeks left with her and by some miracle, last week she turned 8! 

2. Liv how do you Luna, and your whānau maintain a positive outlook?

 

We cry when it gets too much, and sometimes I get angry that my sweet girl has had to endure so much. But for the most part, we have a “ this is the cards we’ve been dealt, let’s play them the best we can” attitude. At the end of the day, it’s not what happens to you in life, it’s how you react to it. Sulking over her condition doesn’t do any good for anyone. So it is what it is. When we chose to proceed with surgeries when she was born knowing her outcome could always be grim we promised ourselves quality over quantity. We want her to have the best life no matter how long, and in order for her to do that we don’t treat her any differently and we don’t look at her heart condition as a bad thing. It’s not something we can change so we embrace it. It’s a part of her and she knows that and is proud of it. Something we will always encourage her to be. 

 

3. Luna, what is something you've learned about yourself through your experiences with your medical condition?

 

I’ve learnt that I can’t keep up when running because I get so breathless but as long as I try my best I’m always proud of myself. 

 

4. Liv, could you share one memorable moment that highlights Luna’s strength and resilience in the face of their condition?

 

This memory puts a lump in the back of my throat as it pulls me back to the dreaded day. It was Luna’s 3rd birthday, we had been in hospital 2.5 months so far and she still had two drains coming out of her chest. My one request was no procedures on her birthday. No dressing changes, no pricks, nothing that she hates or will hurt. Two days before her birthday I noticed one of her drains wasn’t working, they gave it 24 hours to see if it would kick in again. The next day (the day before her birthday) it still wasn’t working and I practically begged that they sort it as it looked like it was going to fall out and I didn’t want anything happening on her birthday. But no. Sure enough the next morning, her birthday, the drain literally fell out of her chest as a nurse was taking a look, they held the hole shut and emergency bells went off and a stampede of doctors and nurses flooded her room. Luna was petrified. They stitched the hole then and there with no pain relief whilst we pinned her down as there was no time for any of the meds to have kicked in. Her screams and the look on her face still haunt me to this day. It was one of the worst days of my life. From that day forward I used my voice and used it loud to be firm with her care as I so badly wished I had been firmer the day before.

 

Once it was over she still said thank you to everyone for helping her. Which is a testament to her character in itself. That afternoon we had a birthday on the ward for her and she was so happy and said it was the best day. Despite everything she had endured that morning she had a smile on her face and continued to enjoy the rest of her birthday. Her strength and resilience shined through that day. 

 

5. Luna, what's your favorite way to pass the time when you're at the doctor's office or hospital? Any favorite games or activities you like to bring along?

 

I like to do colouring and get Mum to quiz me on math questions. If Mum lets me watch Netflix on her phone I also love doing that. 

 

6. Liv, what advice would you give to other parents who are navigating similar medical challenges with their tamariki?

 

Don’t be afraid to use your voice. Your gut feeling is always right and it’s your child and you can absolutely stand your ground when you don’t think something is right. Let people support you, don’t be a hero and try do it alone. Ask questions, no question is a dumb question. Might be controversial to some but be honest with your child. We are very open with Luna since she could understand and I think it’s been vital. If something is going to hurt we tell her. It’s going to hurt, but it has to be done. Therefore she trusts us completely and doesn’t get upset or put up a fight when we say it’s not going to hurt. 

 

7. Luna, if you could give one piece of advice to other kids who might be going through something similar, what would it be?

 

Be brave, be strong, stuff might hurt but you just have to get through it, You’re amazing. 

 

8. Liv and Luna - Is there anything you know now that you wish you knew earlier on?

 

In the early days, I wish I’d been brave enough to use my voice more to advocate for her. But I learnt it along the way and I think that’s part of the process. Also to try not to worry until they give you something to worry about. 

 

9. Luna - If you could trade places with any character from your favourite book or movie for a day, who would it be and why?

Matilda, because she is very nice and she loves her teacher like I do and she has superpowers. 

10. Luna - What's your go-to comfort food or snack when you're feeling a bit down?

 

Salmon & Avocado Sushi and popcorn

 

11. Luna - If you could invent a magical device to make your medical treatments easier or more fun, what would it do?

 

A machine that could take your bloods with no big needles and so it didn’t hurt. I don’t like the big needles. 

Liv - This heart world is a beautifully heartbreaking world to be a part of.  

Tēnā rawa atu rāua Liv and Luna. Thank you both so much for sharing your insights and experiences with us today. Wishing you both continued courage and resilience on this journey. Lots of love, Sarah and Ruby x