24/11/2015 11:47 AM AEDT | Updated 15/07/2016 12:51 PM AEST

#GoPoppyJade: The Beautiful Social Media Tribute To A Baby Girl With Holes In Her Heart


When Ashleigh Danielli gave birth to her second child in October, she high-fived her husband Daniel.

Poppy Jade was beautiful and healthy. It had been a dream pregnancy and a short labour. Daniel spent some time with his wife and daughter, basking in the afterglow of their late-night miracle, before returning home for a few hours' shut-eye.

When Ashleigh called the next morning, Daniel knew something was wrong. Through tears, Ashleigh told Dan to get back to the Prince of Wales Private Hospital in Randwick as soon as possible -- no time for a shower.

There was a problem with Poppy's oesophagus. When the duty nurse had noticed some excess mucous and tried to feed a tube into Poppy's oesophagus, she couldn't get it down. Neither could the Daniellis’ paediatrician.

After some tests, they discovered she had an esophageal atresia with a tracheoesophageal fistula. In layman's terms, her oesophagus wasn't connected properly and her stomach was filling with air. She couldn't eat.

An operation to correct the problem was successful but there was more bad news to come. Poppy had holes in her heart. Specifically, she had four ventricular septal defects, the most troubling of which was near her tricuspid valve. Again, in layman's terms, Poppy Jade wasn't getting enough oxygenated blood to her body and too much blood was being pumped to the lungs.

Daniel and Ashleigh were horrified. New parents, 30 and 29, expecting to take their little girl home to meet her older brother in North Bondi; now they were talking with surgeons, cardiovascular experts, nurses and doctors about options.

Poppy spent the first days of her young life in the ICU at Sydney Children's Hospital. She had two operations, including one to place a band around her pulmonary artery. The aim of the procedure was to help increase the pressure of the bloodflow to the lungs, which encourages the heart to pump oxygenated blood to the rest of her body.

The operation was another success, allowing doctors to remove some of the wires hooked up to this precious little person and wean her off a cocktail of drugs including morphine and midazolam.

But now the Daniellis must wait. Hopefully over the next six months, Poppy's heart will continue to grow to the point where another simple procedure can patch up the heart without causing further damage. Otherwise, a more complicated operation -- a Fontan procedure -- will be required to repair little Poppy's heart.

"This is our new world, this is our new challenge, let's get her fixed," Ashleigh told The Huffington Post Australia.

"Our world was turned upside down and we were introduced to a medical world that none of us have any experience on. You're in disbelief, you're in shock, you're sort of in denial.

"The first week was pretty harsh. I think we spent most days and most hours crying. She's getting there, which is awesome."

Daniel explains that he and his wife have been given a crash course in the anatomy. As he explains the various circumstances Poppy is facing, the complicated multi-syllable medical terms roll off his tongue as if he's been reading about it for years. It's clear from speaking with them that the Daniellis have spent every minute of Poppy's nascent life educating themselves. They should be elbow-deep in nappies; instead they find themselves deep in conversation with surgeons.

What's amazing is their outlook on the situation. Daniel and Ashleigh Danielli are boundlessly optimistic. During our conversation they repeatedly thank the medical staff, their family and their friends. They are already looking forward to Poppy showing off her scars at show and tell. Daniel catches himself describing the journey as a "positive experience", then repeats himself.

"It seems strange to describe this as a positive experiences but it has been, just seeing these amazing people just do their jobs," he told HuffPost Australia.

"The first 24 to 72 hours I was just trying to keep everyone calm. The longer we've been in the ICU and around the medical staff, the more comfortable we have felt about it."

Perhaps their positivity is wrapped up in a social media support campaign started by Ashleigh's father, and spread by the couple's closest friends. A chance meeting on a golf course with rugby league legend Wally Lewis became a hashtag -- #gopoppyjade.

Before long, strangers on the street, actors from Home and Away, retired Broncos star Darren Lockyer, Foreign Minister Julie Bishop, Olympic champion Ian Thorpe and even surfing legend Kelly Slater were sending out messages of love and support on Instagram.

"You really just value friendship, family -- people want to do things for you. There's so much support and love out there," Ashleigh said.

"It's full on. The impact of that social media, you can really feel it. It's incredible."

The Instagram photos have had a powerful effect on the Daniellis. Another powerful Instagram photo is one that Daniel posted of Poppy in the ICU, sleeping late into the night before her operation in a Babytherm. It's a heated crib, hooked up to what seems like a hundred wires. Aptly, he describes it as being like something from a sci-fi film.

But for all the focus on their own child's rough start to life, the Daniellis are already thinking about others. Poppy has a rare blood type, AB negative. It's inspired them to encourage people, anyone, to donate blood. They consider themselves fortunate to have received top-shelf medical care. They want to make sure others have that same opportunity.

"A lot of people are looking for a reason or an excuse to go and donate blood," Ashleigh said.

"It's not for Poppy or for her blood type necessarily, but if someone could give back in that way and give blood that would be awesome."

Daniel is optimistic. Poppy has responded well to treatment and there's a chance they can bring her home sooner than expected. It will be a difficult process, but the Daniellis are buoyed by the future. They hope the kindness and generosity of friends, family and total strangers supporting #gopoppyjade on Instagram and Facebook will create a long-lasting tribute to their baby girl.

Only one wire to go...

A photo posted by Daniel Danielli (@dandan.85) on

"The support from friends, family and complete strangers has been amazing and really allowed us to take our minds off things," Daniel said.

“When Poppy looks back at the first 30 days of her life, she'll be amazed."

To find out more about donating blood, visit the Australian Red Cross.

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