Her survival is a miracle: Father shares story of premature daughter’s fight for life

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.