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Meet Despina

17th July, 2019

Despina’s one-in-a-million broken heart

Doctors are standing on the diving board facing pulling off the cardiac equivalent of four reverse somersaults in pike position to fix Despina Sarri. And that’s after swimming a marathon to even get to the surgical starting line.

The one-year-old was born with two complex heart conditions, where the top chambers of the heart are the wrong way around.

They in turn connect to the reverse chambers below them, which connects them to the wrong arteries intending to send blood around the body.

Add to that another anatomical complication — the artery that sends blood from the heart to the lungs to be oxygenated, didn’t form.

Plus, her internal organs — spleen, liver, stomach and colon — are reversed in a mirror image, on the other side of her body.

Despina (1) has undergone two heart surgeries.

“It’s like a triple flip. It’s three ways backwards,” Royal Children’s Hospital cardiologist Remi Kowalski said.

“Her diagnosis is super complicated, it’s almost as complicated as it could be.

“She is unusual because she has got two separate conditions together, and that particular combination is unusual. I’d guess one in a million.”

A heart defect was detected during the 20-week scan, but such was the complexity of that they saw, parents Anastasia Panagopoulos-Sarri and John Sarris were told that termination or palliative were among their options.

“I said no because I thought that is not for me to do,” she said. “I thought if God is to take her, he’ll take her, but it’s not up to me. I want to give her a chance.”

Despina was transferred to the RCH on her second day of life, where further scans revealed the true complexity of her case — but also gave her hope. This was something they could surgically fix.

Although Despina is getting just enough blood flow from the heart to the lungs through tiny arteries, Dr Kowalski said their first job was to force the growth of her lung arteries.

In a series of surgeries, they have connected a shunt from her aorta — the largest artery in the body — into her lung arteries, with the increased blood flood forcing them to grow bigger.

Once they have grown, which could take a few years, Dr Kowalski said Despina would undergo a “double switch” surgery.

This is where the heart chambers and arteries will be flipped to their correct sides and folded “in and around on itself like origami”.

“Eventually our aim for her would be to have her functioning with the completely normal four chambers circulation, separated into its lung side and body side,” Dr Kowalski said.

Despina back home after Cardiac Surgery with her parents and sisters.

“For that to work, the right side of the heart has to be able to pump into nice lung arteries.

“If they grow well we could be looking at surgery in the next 1-2 years, but really we need to have the good lung arteries first. There is no point rushing her major operation without giving it the best chance of success.”

After more than a month in hospital for two more surgeries, Despina has returned home. Her family now wait, watch and pray ahead of impending surgery.

“I look at her and get inspired by how strong she is,” Ms Panagopoulos-Sarris said. “No matter what happens she will get through.”

Illustration of Despina Sarr’s heart compared to a normal heart to go alongside her story.

 

Originally published in the Herald Sun, April 18, 2019

Words: Brigid O’Connell

Images: Jay Town

To read the original story, visit the Herald Sun website

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