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What’s It Like to Be is a fortnightly column in which New Zealanders from all walks of life share first-hand experiences. Ahead of World Prematurity Day, held annually on November 17 to raise awareness of preterm births and the challenges these babies and their families face, Paulette Crowley hears from Jason Steyn-Ross, whose daughter, Genevieve, was born at just 27 weeks and six days.
My wife Candice and I were excited when we got the news we were expecting our second child in August last year. But about the 10-week mark of the pregnancy, there was a bit of bleeding. At the 20-week scan, we got the news every parent dreads – there was no heartbeat. We were devastated.
We got pregnant again almost straight away. There was bleeding again, this time much worse than in the previous pregnancy. I can remember thinking, “Surely not again?” Each time Candice went in for a scan, we would have this anxiety. I was really worried she’d come back and tell me the baby didn’t have a heartbeat.
Eventually, an obstetrician told us this pregnancy had the same condition as the last one – a partial placental abruption, this time with a subchorionic haemorrhage. Our baby had a 50% chance of survival.
There are so many statistics about the risks of what can happen to babies born prematurely. The earlier they’re born, the higher the risks of all sorts of scary things happening. We did everything we could to prevent another miscarriage. My wife didn’t do any heavy lifting at all and rested as much as she could while looking after our toddler, Imogen.
The 21-week scan showed Candice’s waters had broken. Most of the amniotic fluid had drained, making things very dire. At 26 weeks, another scan showed signs of contractions, so Candice had to stay at Waikato Hospital on full bed rest. Even though the baby had no amniotic fluid around her, incredibly, she managed to stay inside for another 13 days.
Genevieve was breathing on her own after being delivered by an emergency Caesarean section at 27 weeks and six days gestation, which was a miracle. Sometimes that can happen with premature babies – the adrenalin from the birth makes them start to breathe. But she needed lots of breathing support after that – continuous positive airway pressure – and had to go straight to the NICU unit.
She weighed only about 1kg. She was so little that it was scary. We couldn’t touch her for the first week or so, as we were told that skin contact wasn’t viable until then.
My wife was expressing milk every few hours to feed her. Breast milk is important for newborn babies’ immunity and is even more important for premature babies. Genevieve was fed through a tube for most of her stay in hospital. It was done using a syringe initially, but after a few weeks, due to her “spilling” too much, they used a machine that holds a cylinder with the milk and slowly compresses it into the feeding tube. It would normally take more than 30 minutes for each feed.
Candice was up at the hospital for a few hours every day. Imogen was only three then and wasn’t allowed in the NICU unit. You have to be 12 to be allowed in there. That was pretty hard on her as she really wanted to meet her baby sister and didn’t understand why she couldn’t.
I first got to properly hold Genevieve about nine days after she was born. Touch is so important for premature babies – it helps them gain weight and decreases their heartbeat and reduces cortisol in their bodies, which makes them less stressed. When I had to give her back after that first cuddle, she cried as she was put back in her crib. They were tiny little squeaking sounds. It was really hard walking away from her.
I went up to the NICU as much as I could, but I also had to work, and Imogen needed looking after as well. We were really lucky that we lived relatively close to the hospital -- about a 15-minute drive. Some families who had babies in the unit had come from as far away as Gisborne.
Genevieve stayed in the NICU for the next 83 days, until she was full-term, which is 40 weeks’ gestation. At that point, she weighed about 3kg.
We had all been through so much, so it was an amazing day when we could finally bring Genevieve home at the end of May. Imogen raced out of the house to greet her for the first time, which was so cute.
It’s now eight months since Genevieve was born, but we count her development age from when she was full term, so she’s five months old. She’s going really well – smiling and starting to roll when she’s on the floor mat. She’s also getting ready to eat solids, which is amazing.
It’s been a few months now, so talking about this is a little bit easier. At the time, it was so intense, and we just focussed on getting through each day. We had to learn to accept that there were a lot of things out of our control, but we were lucky we got a positive outcome. Not everyone does.
We got a lot of support from the doctors and everyone at the NICU unit and the people at the Little Miracles Trust. I wanted to give back and do what I can to raise funds to support them on World Prematurity Day on November 17.
I’ll be bowling into cricket nets for 12 hours straight at one of the local schools, which sounds nuts, but it should be lots of fun, and it’s all for a good cause.
The Stats...
- One in 10 Kiwi babies need neonatal intensive or special care, which equates to one born every 90 minutes.
- More than 5000 New Zealand families each year will have a NICU or SCBU baby.
- Some families are hundreds of kilometres from home and have their little one in the unit for hundreds of days.
About Little Miracles Trust:
· New Zealand’s national charity that supports the families of Aotearoa’s premature and unwell babies to make a difficult start to life that little bit easier.
- Donates emergency care packs to each of the 5000 whānau with a NICU or SCBU baby.
- Teams in each New Zealand NICU provide thousands of hours of cot-side family peer support.
- For those families doing it hard, the trust distributes food and petrol vouchers, access to meals and morning teas.
- On discharge, a national network of playgroups gives neonatal whānau the chance to connect and to access expertise from experts like paediatric physios.
What’s Happening...
- It’s World Prematurity Day on Sunday, November 17. New Zealand kicks off the day globally.
- More than 50 landmarks across Aotearoa will be Lighting Up Purple to raise awareness for those babies born too soon.
- Little Miracles Trust will host morning teas in every NICU to acknowledge the day with the families and the teams who care for them, giving every family a purple ribbon to mark the day and their journey.
