THE GIFT OF LIFE:
the Aussie mums turning grieving into giving
New mother Penny Pearce has long, thick brown hair that her baby Vivian likes to grab onto. At nearly 11 months, Viv is curious and alert. She wants to be where the grown-ups are and contributes to the conversation in her own, unique baby language. Her small head is covered in fine wisps of red hair that her mother absently strokes, marvelling at how far she has come from the harrowing days and weeks surrounding her perilously early birth.
“It was really hard,” Penny, 31, says. “At the start she was so tiny we couldn’t hold her.” Born at just 26 weeks, Viv came into the world with underdeveloped lungs and her eyelids fused shut. She weighed just 96 grams. But Viv soon became a critical force in the development of the groundbreaking Red Cross Milk Bank.
Penny’s job as a crime scene photographer had taken her all over Sydney, forensically recording the crucial details of a city’s trauma. It was difficult work, emotionally and physically, but there was a far greater and graver challenge ahead.
“We realised there was someone missing,” she says, of the day several years ago when she and husband Andrew decided they were ready to start a family. Things didn’t go as smoothly as they’d hoped. It was a few years before they saw a positive test result and when they did, it was more than they had bargained for. Penny was pregnant with twins. “We were just so excited, and frightened as well for the unknown,” she says. “We didn’t know what to expect, having two little ones.”
Eighteen weeks into her pregnancy, Penny began to have uncomfortable cramps. “We just kept it in check – everything seemed to be normal,” she says. But a week later, her waters broke. It was too early for baby Archie to come into this world. Even though sophisticated Neonatal Intensive Care Units can give babies born as early as 23 weeks gestation a fighting chance at survival, Archie was just too small, and drifted away not long after birth.
Amid their grief and shock, Penny and Andrew had yet more bad news: the trauma of labour could induce the second baby.
Penny stayed in hospital for four weeks while the doctors did what they could to forestall the labour. The Pearces were aiming to make it to 23 weeks. On Christmas Day,
Penny and Andrew set themselves a new goal: they wanted to make it to Australia Day.
Of course, in reality, there were limits to what anyone could do. “It’s such an unusual situation,” Penny says. “The doctors said, ‘Look she could be born at 38 weeks or she could be born at 23 weeks, we just have to wait and see’.”
At week 23, Penny was sent home under strict instructions to rest. On January 16, she began to feel labour pains. “I was able to get to the hospital, where they gave me a few different medicines that would help her,” she says. The doctor was scanning Penny’s stomach to assess her baby’s position when Penny started haemorrhaging and was immediately sent to delivery for an emergency caesarean.
Vivian arrived at 26 weeks, tiny but determined. She had a strong spirit, and the love of two parents willing her to fight against her cruel odds.
Viv started her life in the Nepean Hospital’s Neonatal Intensive Care Unit (NCIU), among other tiny premature babies. Penny and Andrew couldn’t hold her, but they could watch with awe and love.
“It was a bittersweet feeling because Viv was here with us and all things considered she was doing really well,” Penny says. “But Archie wasn’t and I felt guilty to be happy.”
As soon as Viv was born, Penny began expressing milk every three hours, desperate to preserve the nutrient-dense food that is recommended for newborns. It gave her purpose, and something to distract her while her tiny baby was hooked up to machines and tubes in hospital.
“The staff in the NICU were wonderful but they needed to prioritise the babies’ health,” Penny says. “There were times in the day when I needed to leave so they could care for the children and for
Viv. Even though I understood that’s what had to happen, it’s really hard to say, ‘Okay, I’ve got to leave my baby now.’ Being able to express gave me something that I could do that I knew was going to help her.”
Penny was producing enough milk for both the babies she had carried but knew not all mothers of preterm babies had a consistent supply of milk, and she wanted to help. Her excess milk belonged to Archie, and she couldn’t bear to throw it away. It was, she felt, all she had left of him. Over time, she saved almost 18 litres of the “liquid gold” and began to investigate options for donating it.
Penny’s life-saving donation was used to license a NSW breast milk collection and delivery service that would provide high-quality, pasteurised donor milk to vulnerable premature babies.
In December, the Australian Red Cross Blood Service and the NSW government cut the ribbon on a Milk Bank that will deliver 2000 litres of milk to NICU units each year. The Milk Bank will operate like a blood bank – donors will be screened, and the milk will be tested and pasteurised. Manager Christine Sulfaro says the
service will provide crucial nutrition to the state’s most vulnerable babies, and will help mothers who are adjusting to the shock of early arrival.
“Being able to express is actually quite therapeutic and just made me feel a bit more useful,” Penny says. “I believe the reason I produced so much milk is because I was pregnant with twins, and if they’d both come full term I would have had the right amount of milk for both of them, but because she was so early and he was gone, all the milk was just there waiting for him.”
White gold
Breastfeeding is recommended by the World Health Organisation for the first six months of a baby’s life but many premature babies born in Australia don’t have access to a sufficient supply of their mother’s own milk. “We all know that mum’s own milk is by far the best source of nutrition for babies, and when they don’t have access to that, there’s really not a lot of options, so having a supply of high-quality, pasteurised donor human milk will make a huge impact on the lives of not only babies but the mums,” Christine says.
Approximately 8 per cent of Australian babies are born before 37 weeks and of these, about 2600 are born before 32 weeks of gestation, or weigh less than 1500 grams.
In the absence of donor milk, the feeding options for premmie babies whose own mothers’ milk is not available are limited. They either stay nil by mouth, receiving parenteral nutrition via a drip, which can increase the chance of infection, or they are given formula.
A 2018 UK review of formula versus donor breast milk found that donor breast milk was easier for preterm infants to digest. Formula increases the rate of growth during the hospital stay, but carries a higher risk of babies developing the lifethreatening gastrointestinal disease Necrotising enterocolitis (NEC).
Thirty-five babies died from NEC across Australia and New Zealand in 2016. The UK donor milk review found that formula is associated with a near-doubling of the risk of developing NEC. The Milk Bank will provide a valuable alternative to it.
“What the Blood Service is doing with this Milk Bank is going to have far-reaching, wonderful benefits for a lifetime,” Christine says.
Absolute shock
Karen Brodie and her baby William are among those to benefit from the life-saving initiative. Karen, a teacher from Adelaide, was about 30 weeks pregnant and progressing beautifully with her first baby when she suddenly became very ill. After a night of vomiting, nausea and high blood pressure, she went to her doctor and was told she was showing signs of pre-eclampsia.
Karen was admitted to hospital, where she was given steroid injections to prepare her baby’s lungs to breathe, in case he came early.
“Being able to express is actually quite therapeutic and just made me feel a bit more useful.”
“A couple of days later, things escalated again,” Karen says. The doctor ordered an emergency caesarean and tiny William Brodie arrived at 31 weeks and one day.
“It was absolute shock. We just weren’t ready for it,” Karen says. “Having an emergency C-section when you’re really unwell was pretty scary. We expected to have nine more weeks to prepare and then suddenly that moment had arrived, and not in the smoothest way.”
Karen had always planned to breastfeed Will but his unscheduled appearance meant that she wasn’t able to produce the breastmilk he needed. She and her husband Josh were excited when they learned about the Milk Bank, and the knowledge her son was getting breast milk, regardless of whether she was able to produce any, ultimately took the pressure off her and, she believes, gave her the time she needed to build her own supply.
“I was trying to express as much as I could but it wasn’t enough,” Karen says. “Knowing that there was that other milk there as a back-up was really great and it meant that he has been able to be breastfed the whole time. When we came home, he was able to be just on my milk.
“I’ve wondered since then if he’d started on formula whether I would have had the motivation to go through that hard journey of expressing all the time and building up my own supply, or whether formula would have been the easier option since my own milk wasn’t there. I guess the fact that someone else was willing to do that for my baby certainly encouraged me to keep trying to do it myself. I was very grateful.”
Donor milk doesn’t adversely impact on the breastfeeding rate at discharge time, Christine says, and many mothers find that knowing their baby is getting high-quality donor human milk takes the pressure off them. “They want their baby to have a human milk diet and if they can’t provide it, they stress even more, which has detrimental consequences on their ability to establish a supply,” Christine says.
“It’s well known that to have a good supply of breast milk you need adequate rest, minimal stress, a good diet and a good fluid intake. If you’ve got a sick little prem baby, you’ve just
“It’s just an amazing thing for a tiny baby to be able to help so many people.”
about wiped out the things that you need to establish your supply.”
Wave of guilt
Penrith mother Shelley Frazer was only 25 weeks into her complicated twin pregnancy when she went into labour. Sadly, one of her twins did not survive and her little boy Arlo was given only a 50/50 chance.
“I was expressing around the clock, eating lactation cookies, taking doctor-prescribed medication and following every bit of advice possible to increase my supply or at the very least keep the supply I had,” Shelley wrote in an account of her experience.
“I didn’t have enough breastmilk to support the new daily quota Arlo required. The nurses got me to sign a permission form to supplement my breast milk for formula to keep up with Arlo’s feeds. When I signed the permission form, my heart sank and a new wave of guilt hit me. By the time Arlo was able to physically try to breast feed, my milk supply had ceased.
“Having donated milk available would have meant the world to us,” Shelley says. “Arlo would have been supplemented donor breast milk along with my own breast milk, instead of formula.”
The Red Cross operates milk banks in South Australia and NSW, and hopes to launch more in other states, too. Eleven neonatal units around the country benefit from milk banks, including the Mercy in Melbourne, Royal Prince Alfred in Sydney, and the Royal Brisbane and Women’s Hospital Milk Bank in Queensland.
Christine hopes the Red Cross will be able to work with state governments all over the country to provide a more comprehensive service to babies in need.
A life-saving legacy
As The Weekly chats to Penny about her journey, and the little spark of goodness she was able to find in the darkest period of her life, Viv flaps her arms and gurgles and smiles.
“She’s just amazing to watch,” Penny says, touching her daughter tenderly. “She takes everything in and she responds to facial expressions.”
Amid the tragedy, Penny and Andrew cherish the knowledge that other babies just like Vivian have benefited from the gift left by their son. It’s something to hold onto; something they can be proud of.
“It’s his milk,” Penny says. “It’s a legacy for our baby boy. It’s just an amazing thing for a tiny baby to be able to help so many people.”