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The dreams, the nightmares, and now the beautiful future

by
May 16, 2017

Moon sisters Eliza (1) and Felicity (2). Both had major surgery in their first year of life. Photo by Luke Hemer.

Carmen with her two youngest daughters. Photo: Luke Hemer.

CARMEN and Stacey Moon endured a tortured 19-hour vigil at the bedside of their baby daughter Felicity.

Willing her, pleading with her, to wake after brain surgery in the Royal Children’s Hospital that had been a desperate bid to reverse a life-threatening condition.

Yet as overwhelming and as frightening as it had all been, incredibly the couple would find themselves back in the RCH less than 12 months later – but with Felicity’s baby sister Eliza, who would also be fighting for her life.

She had been born with DiGeorge Syndrome, a chromosomal disorder resulting in poor development of several bodily systems that can cause heart defects and a poor immune system – with all the attendant complications.

Which is exactly what it did to Eliza.

Yet these night-mares had started so innocently, so blissfully.

The Moons had had two children in their 20s – daughters Stephanie, 12, and Natalie, 10.

And felt, now they were in their 30s, they would love more children.

It would prove a life-changing decision on so many levels, with the Rochester couple agreeing if they had not had access to Australia’s healthcare system, “if it wasn’t for all the medical staff locally we would have had to bury two daughters” instead of celebrating their milestone events.

Both their children spent their first 12 months in the shadow of death, their parents struggling to keep up with the drama continually unfolding around them.

“I think back now and wonder if all of this would have happened if we had them all in a row when we were younger,” Carmen said.

At first there was no hint of what was to come, with Carmen enjoying “a breezy third pregnancy” until her waters suddenly broke at 36 weeks.

“Looking now at her baby photos I can see the crown on her head and I will always carry that guilt that I didn’t realise it straight away,” she said.

At Felicity’s four week check her maternal health nurse suggested an ultrasound be taken as her head had grown dramatically.

“Once I saw that ultrasound I just knew something bad was about to happen,” Carmen said.

“There was a lot of spinal fluid and we were sent straight to Melbourne where she got a CAT scan before going into emergency surgery,” she said.

“That was the hardest part, and it was really tough on Stacey saying goodbye to her.”

The surgery Felicity had to survive isn’t normally performed on babies but the specialists at the RCH still believed it was the baby’s best hope.

“She had an endoscopic third ventriculostomy which cleared out the blood clot which was blocking the third ventricle at the base of her head.

“It was so unbelievably unlucky for the blood clot to land where it did.

“And that 19 hours after the surgery, when she wouldn’t wake up, that was probably the worst time of our lives. Just not knowing what would happen.

“Since then she has had daily physiotherapy and is now starting to grow into her head but it has taken a lot for us to get where she is today.”

At Christmas the now two-year-old had a massive milestone moment – she took her first steps.

“It was such a big achievement,” Carmen said. “She is so strong and has been through the absolute worst.”

It was four months into Felicity’s life that Carmen was pregnant again with her fourth, and worst, pregnancy.

“My motherly instinct kicked in, I could tell something was different, not right,” Carmen said.

Eliza arrived with her hand bent over and without a sucking reflex.

“Often the wrist and heart are connected at birth, due to the timing of their growth, but the X-ray of her hand came back fine,” Carmen said.

“That was until they did the ultrasound on her heart.

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“I was looking at the ultrasound as it was taking place and I could actually see the holes in her heart.”

Eliza was born with two holes and the inevitable open heart surgery on this frail tot was yet another agony for her parents to go through.

But before Eliza was big enough for the surgery doctors insisted on genetic testing — “I didn’t really think anything of it, it was just another test,” Carmen said. “But without it we wouldn’t have known she had DiGeorge Syndrome.”

DiGeorge is a chromosomal disorder that results in poor development of several bodily systems. It can cause heart defects or a poor immune system – or in Eliza’s case, both.

“There were 180 different things that could go wrong,” Carmen said.

“And as she kept growing the open heart surgery grew closer – I just kept saying no.

“But we had to bite the bullet and on January 20 she went into surgery at the Royal Children’s Hospital.”

A date that has left a dark stain on the city of Melbourne – the day a man drove through the crowds in the Bourke St Mall, killing six and injuring dozens.

Where the Moons had been only minutes earlier after medical staff insisted they take a break from the hospital while Eliza was in surgery.

“We were told to get out of the hospital so we had caught a tram into the city to see a movie – but I couldn’t concentrate; I just wanted to get back to my baby.

“As soon as we got on the tram back to the hospital we saw all these police cars fly past us and we just knew something horrible had happened.

“When we got to the hospital, and this is something I will never forget, we saw a policeman running in to the hospital with the three-month-old baby who had died in the rampage.”

With a chilled dread Carmen realised Eliza could have woken up without her parents. But when she did come to it was with a strength her parents had never suspected she had.

“It is amazing what she had to endure,” Carmen said.

And although she has regular check-ups, is a happy and healthy baby.

“It was all like a dream,” Carmen said. “But at the end of it I have a new found appreciation of the Royal Children’s Hospital and we are so fortunate to live in Australia and have access to the health system we do,” she said. “It is something we take for granted.”

But when the Moons now talk about their journey, from that first acute observation by the maternal health nurse through to the spectacular surgeons, physicians and support staff at the RCH, they talk of their good fortune to have had that resource.

And when they talk about their children, all four of them, their eyes and faces light up as they can finally dream of the lives to come.

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