The surprise and joy of discovering there were “two little jelly beans” inside her womb turned to fear when at 17 weeks Nicole Fleming was diagnosed with twin-to-twin transfusion syndrome (TTTS).
The conditions means the twins shared unequal amounts of the placenta’s blood supply resulting in dramatically different rates of growth.
Surgery was required to allow each twin to develop independently. There was a chance that one of the girls would not survive, but if nothing was done both girls would not make it to birth.
Nicole and Shannon, who already had three healthy children, said they never contemplated the latter and, looking back, Nicole believes that “everything is in God’s hand, ultimately it’s not up to us”.
Against the odds, Isla and Eloise survived the surgery, however Isla had developed a heart condition and Eloise received a blockage in her brain.
“Each week we would go in for scans expecting only to see one heartbeat but we kept on seeing two,” said Shannon.
For Isla it was better if the pregnancy continued, for Eloise it was the opposite but even at 28 weeks she only had a five per cent chance of survival.
“It was decided we needed to give Isla her best possible chance of survival and pray that Eloise could hold on just a few weeks longer…In choosing to wait, we were faced with the emotional baggage of saving one life at the very high risk of losing another,” Nicole said.
Together with the medical team led by neonatologist Dr Chad Andersen at the Women’s and Children’s Hospital, they decided the babies would be delivered at 29 weeks and on August 22 2018, Nicole gave birth to Isla, weighing 1.56kg, and Eloise, 480g. The delivery was not without complications, with Nicole losing half her body weight in blood and experiencing terrible after birth pains. But desperate to see her babies, she quickly joined Shannon in the tight-knit neonatal family at the hospital as together they cared lovingly for the twins.
While the focus was on Eloise gaining weight and controlling fluid on the brain, at nearly four weeks of age Isla’s heart was struggling and it was decided to fly her to Melbourne for cardiac surgery.
With the outlook for Isla still optimistic, Nicole was reluctant to leave tiny Eloise. Her beloved nonna had died just days before, making the decision even harder, but arrangements were made for Shannon’s parents to look after the other children and the couple accompanied Isla on her medical flight to Melbourne.
The surgery went smoothly but, cruelly, there were post-operative complications and Isla died the next morning.
Today Nicole is glad that she was there to hold her precious daughter for a few hours after her death.
She said she would always carry the burden of choosing to deliver Isla early in order to save her sister, and some days she still feels angry, but mostly she is incredibly grateful that she has ‘Ellie’, now 18 months old, and that both girls “have a story to tell”.
Through the learnings from Isla’s death, procedures have been amended at children’s hospitals in Australia, and the family has also become passionate fundraisers for the WCH Foundation.
“Isla’s life was so short, we want to make sure it has meaning,” said Nicole.
Shannon said the family was “so grateful for what everyone did for us” during the four months they were involved with the neonatal unit that he wanted to “give back”.
“We had the worst experience possible but also the best possible experience…people think a hospital is a bad place but it’s not, and it doesn’t matter what the building is like, it’s about the people.”
Shannon has received generous support from his contacts as a chef and through St Ignatius’ College, where his mother Cathy has worked for 20 years and where he went to school. Nicole’s parents are parishioners at St Augustine’s Church, Salisbury, and she attended the parish school before meeting Shannon at the Tea Tree Gully Antioch youth group.
“We couldn’t have got through all this without our faith,” said Nicole, who placed her nonna’s rosary beads around Isla’s neck when she died.
Among the people who helped her when she was first admitted to hospital was Fr Peter Rozitis, chaplain at the WCH.
Nicole said she “connected” with Fr Peter straight away and appreciated having someone to talk to. Shannon had recently left his job as a chef at a top Adelaide restaurant to start his own catering business and couldn’t be around all the time.
Fr Peter blessed the babies before their birth and then presided at Isla’s funeral Mass.
Nicole said her other three children, Amelia, 10, Eamon, 8, and Ciara, 7, had been “troopers” but the funeral was a particularly difficult time for them.
“We’re slowing starting to get through to them that church can be a place of celebration,” said Shannon. “For them, church has been death.”
“When it was the twins’ birthday, it was good to be able to talk about Isla being up there sharing her birthday with Jesus, it gives them more of a connection.”
On the first Mother’s Day after Isla’s passing, Amelia, Eamon and Ciara got together and made a sign called ‘Isla’s patch’ near the gate at their Basket Range home. The family calls it “our little piece of heaven”.
“While Isla never came home, we feel she is here with us,” Nicole said. “She’s our guardian angel.”
As for Eloise, she continues to show her fighting spirit as she puts up with regular medical checks but is doing “really well”.
“She has brought so much joy to our lives already and is proof that miracles truly can happen.”
- The Flemings will host their second fundraising dinner ‘Collaboration for a Cause’ at Lot 100, where Shannon now works, on June 20. Last year’s dinner raised about $60,000 for the
Neonatal Care Unit at the Women’s and Children’s Hospital. Find out more at https://wchfoundation.org.au/flemings/
Jump to next article