Rachel Friend on helping parents through a rocky start

People who haven’t heard of The Neonatal Trust could consider themselves lucky, however those who have, love them. This is because The Neonatal Trust supports parents of the 1 in 10 babies who are born prematurely or full-term with health issues in New Zealand every year. On level 9 of Auckland hospital, in a small room bursting at the seams with tiny, lovingly-made booties, Rachel Friend — Executive Manager of the Auckland Neonatal Trust — shared her experience of being on both sides of the roller coaster journey of parenting a premature baby.

What exactly does The Neonatal Trust do?

It’s as broad as it is long because we operate at both a national and regional level. At a national level we raise money to go back into the units or to fund research into neonatal and perinatal care throughout New Zealand institutions such as the Liggins Institute and Otago University.
We also raise awareness and support families particularly on key days such as Mothers day, Fathers day and Christmas day.

Dr Maria Saito Benz working on a NIMO-AI study (Near Infrared spectroscopy for Monitoring brain Oxygenation in Anaemic premature Infants) in the Wellington NICU.

At a regional level, we’re here to support the families going through a Neonatal Intensive Care Unit (NICU) journey. The most important thing we do for families is to just be here for them. Everyone who works here in Auckland has been through NICU themselves, so for us it’s about paying it forward and helping out those families who are going through it now.

From a practical point of view, we think about what parents need while they’re in NICU and stock those things here right next to the ward so they don’t have to leave baby to go to the shops. If families are struggling financially we can provide some things free of charge — it could be as simple as a mobile phone top-up voucher. We’ve recently fundraised to convert five hospital rooms into parent rooms with queen beds, couches, and fridges so that mum and dad can stay over with baby.

Practical things stocked by The Neonatal Trust within the ward so parents don’t have to leave baby.

We also connect families to create a sense of community, because it’s quite common for parents to live far away from their families, or miss out on antenatal classes and the connections made there. Although we are spread so far and wide these days, it still takes a village to raise a child. They get to meet other mums and dads who have that underlying understanding that we’ve all been there and we all get it.

What was your own journey of going through NICU?

I went through NICU with my wee boy Reuben, who’s now five and just started school. At 24 weeks, I went into spontaneous labour — we still have no idea why. It was a big shock and very stressful once he was here, with critical matters of life and death. I knew nothing; I didn’t even know babies survived at that gestation.

He was tiny; 665 grams, 30 cm long and really scrawny. His skin was translucent and his eyes were fused. We couldn’t hold him for 10 days because he was too fragile and his skin was so thin that it could tear.

Within the first three weeks, we nearly lost Reuben at least twice. You hear the alarm go off suddenly throughout the floor and you just go rigid. It’s like a SWAT team coming in — there’s paper flying everywhere and they’re tearing things open and trying to get stuff down his throat — but he came back both times.

He went from fighting to breathe, to being discharged a week before due-date on no oxygen and no feeding tube, which was pretty amazing. But it doesn’t stop there. With the first few years you still hold your breath and look for red flags from a developmental point of view.

What did you take out of the experience?

Before having Reuben and shortly afterwards, I worked in the corporate world, doing the big 12–14 hour days. I think anyone who’s been through here will tell you that the biggest takeaway from it is that your perspective changes significantly. Your priorities change.

I think your priorities change when you have kids anyway, but when you’ve seen your child fight for their life, you think, actually, you know what? This is more important.

So it’s completely different now, working for a not-for-profit. I don’t go to many meetings anymore. I don’t have office politics. I enjoyed what I did and there might be a day when I go back to the corporate life again, possibly not, I don’t know. I struggled when I went back with the fresh perspective; I just wanted to go in and do the best job I could do, so why couldn’t everybody just get on with life and get on with each other? You change.

What do you love about your job as Executive Manager?

I enjoy all of it! Just coming back in to work after the Christmas break was great. I literally turn the key in the door, walk in and put my bag down, and I’m in my zen space. Although a lot of the time I don’t hear great stories, I go home feeling like I’ve made a difference.

The biggest thing is that I’m able to help other families and that out of the worst situation in my life has come the best situation in my life.

When have you been really proud of what you do?

When the babies go home! Or when the families come back. It’s magic — you get to see how far they’ve come and you can say, ‘wow, you did it. Well done!’

What advice would you give to other parents of premature babies?

People will want to help, but they need directing. Have a list ready of things you’d like them to do or buy or donate because otherwise they’ll do stuff that you might not necessarily want them to do. If you want them to pay for a cleaner or My Food Bag, don’t be afraid to ask. Look after yourself, and hold onto the fact that your baby will not remember a single thing about the experience.

What about for friends of families going through a NICU journey?

When baby arrives, celebrate it! People don’t know how to react to this situation, but it can be hard for parents when no one has congratulated them on their child arriving. Also, if the parents don’t want you to visit, don’t be offended, because it is really tiring and stressful and even one visitor per day is quite full-on. Appreciate that they’re busy while they’re on the ward.

I think there is a perception that your baby’s in an incubator and you just sit there staring at your child, but it’s nothing like that. The day is so busy and before you know it you’re going home again for the night.

What are you wanting to do next to better support parents?

You have so much support while you’re here in the ward, but when you go home it can be quite isolating. It’s also a time when you start to process everything that’s happened and there’s evidence of some mothers experiencing post-traumatic stress disorder, sometimes even on top of post-natal depression, so it’d be great to do some more work in that space. Last year we funded eight post-NICU parents to go through a parenting course where you talk through your experiences and develop new parenting skills, and we’d love to run the course every year. We want it to be something that we invest in and can do for the long term, but you can only eat the elephant one bite at a time.

Who else is involved in helping families get through?

There’s a huge amount of people involved, right from the birth. As an indication, there were 10–12 people in our birth. You’ve got the nursing team, the nursing specialists, the neonatologists, the doctors, the Home Careteam, right through to the receptionist, the cleaning team — you’re here for so long that you get to know them all. It was amazing coming back in to the ward when Reuben was older, because they all remember you, which is incredible for the amount of people who go through! Then there’s the families and friends who fundraise for us, or donate goods like Good Bitches Baking, knitters from all around New Zealand making the blankets, cardigans and booties; we’ll get people all the way from Invercargill sending us things in the post…Fisher and Paykel are a big supporter with the breast pumps that we on-hire to families and Storage King Grey Lynn kindly provide storage space free-of-charge. Then there’s the national supporters like Weta Workshop, Mojo coffee, Hell Pizza, WOW, The Good Registry, One Percent Collective plus many, many more.

Lovingly made clothing sent by knitters around New Zealand.

How can people support the community or get involved?

A whole variety of ways! You can donate or get in touch with your regional team and see what they need. We accept a lot of donated goods such as knitting, crocheting, patchwork quilts, preloved baby clothes, baking for the staff and NICU mums. Once a year we have the annual world prematurity day on the 17th November, and buildings get lit up purple all around the world — so should you work for an organisation like Sky City that has an amazing building we could light up purple we’d love that! You can volunteer for public awareness campaigns, cater for events, support our movie fundraisers, donate goods for goodie bags for events. There will always be ways that people can help, it will just be different depending on the region.