Gen and Evie’s Story

When Sierra had her first pregnancy scan and found out that her and her husband, Tim, were expecting twins, she was astounded.

“You could have knocked me over with a feather, I did not see that coming,” said Sierra.

But little did they know, that surprise twins were nothing compared with the shock of going into labour at just 22 weeks and 5 days.

Sierra’s pregnancy was smooth sailing at the beginning, apart from her unrelenting morning sickness, and just as she was settling into the second trimester and starting to feel well again, she learned her twins had twin to twin transfusion syndrome (TTTS).

TTTS is a rare condition that affects approximately 10 per cent of identical twins that share a single placenta and is caused by an imbalance of blood flow from the donor twin to the recipient twin. Left untreated TTTS can cause serious health conditions, including infant loss.

Sierra required fetal laser surgery to treat her TTTS at Mater’s Centre for Maternal Fetal Medicine, when she was 19 weeks pregnant.

“I had two weeks of feeling glorious in my pregnancy before I had the surgery. After the surgery I felt exhausted for weeks,” said Sierra.

Sierra works for Mater Education, training doctors and nurses to use IT systems and loves her job. After recovering from surgery, she went back to work, but only for one week.

“I work at Mater because I can make a difference to the lives of patients,” said Sierra.

Sierra knew that there was a good chance she’d go into labour early having had the fetal laser surgery, and she had hoped to get to 25 weeks.

Her twins had other ideas and she went into labour at 22 weeks and 5 days. She went straight to Mater, where the team did everything they could to keep her babies from being born that early.

“We had discussions with the doctor about how it was too soon, and it’s a VERY hard conversation to have. Then I was sedated, and I stayed in birth suites and managed to hold on. I held on until we got to 23 weeks and one day” Sierra recalled, “the discussions that you have at 22 +5, are different to the discussions you have at 23 + 1. We suddenly had the choice. We had a chance.”

“When they were born, they both gave lovely cries. It was the best possible thing we could have expected. It was music to our ears,” Sierra said. “Everybody in the room gave a great sigh of relief.”

Evelyn (Evie) was born first weighing a tiny 526 grams. Evie was whisked away to be cared for by the doctors and nurses in Mater’s Neonatal Critical Care Unit (NCCU). Tim held her tiny hand the whole way up to NCCU.

“Tim tells me that they made him sing ‘happy birthday’ to the girls, up in the NCCU ward, which I think is REALLY cute,” Sierra recalled.

Shortly after Evie was born, Genevieve (Gen), was born, weighing just 470g.

Sierra said she felt bewildered. “When I went into the birth suites on 23 and 1, I had pretty low hopes. You can’t expect to walk out with a baby. And the fact that I did was an absolute miracle. And the fact that I walked out with two, is even more of a miracle.”

Sierra recalled holding Gen’s hand for the first time in NCCU “her finger was so tiny—I remember holding her whole hand and her fingers couldn’t stretch across my finger nail.”

Gen was on a ventilator for about a month, and Evie for two. Sierra said, “Gen’s a very, very healthy baby, for someone who is meant to be a 23 weeker. She has always just been able to get on top of things a little bit faster, than Evie.”

Sierra recalled a particularly hard conversation she had with the NCCU nurses when the girls were about a month old. They said “Evie is weak of spirit.”

At that point, Sierra or Tim hadn’t even been able to give their tiny baby girls a cuddle.

“I lasted almost two months without even holding my babies. It drives you insane,” said Sierra.

A few weeks later, Sierra was finally able to cuddle her babies. She held Evie first.

“Cue the tears. I think I cried more then, than I had for anything else. And it was the MOST WONDERFUL feeling in the entire world. She was so tiny and so warm. It was absolutely beautiful,” Sierra recalled.

Unfortunately, Evie had a brain bleed diagnosed at around two weeks, which can lead to issues like Cerebral Palsy and other physical limitations when she is older. Sierra and Tim have focused on early intervention and worked with Physiotherapists, Occupational Therapists, as well as attend training sessions about how to help Evie daily.

“Now when we see her moving in similar ways to her sister, we know that she’s a miracle—and she’s done her homework to get on top of these things. It’s wonderful.”

The twins called NCCU home for 150 days.

Sierra reflected on the amazing care from the nurses at Mater, “the amount of support that they willingly and freely gave me that I didn’t even realise I needed was everything to me and my family. I’m so thankful, they’re so amazing. And you can tell their heart is in it.”

Sierra remembered a very special moment, “One of my favourite memories is when I walked into the NCCU ward, and one of the nurses had Evie out and was sitting on her lap and she was reading her a book. And this book called ‘Invisible Ties’, the book is about how the people who love you may not always be with you, but they always love you. That level of care—you can’t thank somebody with words.”

Gen was able to go home after 111 days in NCCU, but Evie was still too unwell to go home. Sierra said it was incredibly hard having to leave one of her babies in the hospital. She would bring Gen to see her sister daily and finally at 150 days, Evie was able to go home to her family and she blossomed. Although Evie is still on low flow oxygen Sierra hopes soon she will not need it.

Evie and Gen are 12 months old and thriving.

“Holding these beautiful little babies that would have never stood a chance without Mater’s care—there’s no words that I can say to express my gratitude,” said Sierra.

Sierra is so thankful to Mater Lotteries supporters, for their part in helping her baby girls survive. “Their support means absolutely everything to the patients, it’s something that can never be underestimated—the difference they are making. And I would like to thank each one of them individually—I ever get the chance, I will shake their hands for what can be done with their support. Because they make it all possible.”

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