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Meet Ireland’s miracle baby born with hole in heart who made it home from hospital after 100 days

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Little Zachary surprised the doctors

Little Zachary surprised the doctors

Dad Rami with Zachary

Dad Rami with Zachary

Mum Marian and her baby Zachary in the hospital

Mum Marian and her baby Zachary in the hospital

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Little Zachary surprised the doctors

MEET Ireland's miracle baby who spent 100 days in hospital fighting to stay alive.

Little Zachary has astounded doctors after overcoming two surgeries for a hole in his heart, one experimental procedure, sepsis and numerous infections.

In fact, his parents were told medics hadn't seen a case of this complexity go through so much and make it.

But it all ended in tears of joy for battling Zachary's proud parents Marian Slevin and Rami Leonidis, who were finally able to bring their son home from Crumlin Children's Hospital the day before Christmas Eve.

Zachary was born at the National Maternity Hospital in Dublin's Holles Street on September 16, weighing 7lbs 3.5oz.

"We knew before he was even in the world that Zachary had a congenital heart defect and would require open heart surgery," explains Marian.

"We found out at our 21-week scan in Holles Street that he had what's known as complete AVSD - Atrioventricular Septal Defect. Both Rami and I saw immediately on the scan, before we were even told, that there was one heart chamber where there should be four - but it was Rami who said it out loud."

There had been no indication up to that point that anything was wrong.

"The 12-week scan was normal, the Harmony test was normal," Marian says.

"During the 21-week-scan, everything was normal until we came to the heart and we could see quite clearly on the screen that there were not four chambers.

"We knew from week 21 that our little man had a congenital heart defect and most likely would require open heart surgery - that gave us time to mentally prepare for the road ahead, to understand the condition, the options available to us and do the very best for our baby boy."

The couple were quickly put in touch with cardiology and foetal medicine, with strategic co-ordination between Holles Street and Children's Health Ireland (CHI) at Crumlin.

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They met Professor Colin McMahon (CHI) at his Thursday clinic in Holles Street where the condition was regularly monitored prior to Zach's birth.

"I'd secretly had conversations with Zachary in the womb, saying 'when you are ready to come into the world, try make it a Thursday as Professor McMahon will be in the hospital'," says Marian.

"My reasoning being we can only know so much before a child is born, it is the few days after birth that shows the true picture, so secretly I had hoped he would be born on a Thursday."

As it happened, Marian had gone to the hospital for a routine check-up and was brought in for induction.

"Zachary was born on a Thursday and, sure enough, Dr McMahon was one of the first faces we saw after his birth," she recalls. "He reviewed Zachary and was able to see another potential issue with the heart."

Zachary was transferred to Crumlin where he would spend the next 100 days of his life.

"For the first couple of days we were apart. I was still in Holles Street whilst Zachary was in the Children's Heart Centre at Crumlin with his dad. I hated being away from him but knew that he was in the very best place.

"Whilst still in Holles Street I got a phone call to say Zachary was being transferred to ICU where he would go on to spend approximately the next two months in a bid to save his life.

"During his time in ICU he was ventilated and had an array of interventions - he underwent a coarctation repair, battled sepsis, numerous infections and underwent open heart surgery at just two months old, an operation he was not supposed to have until he was a bit older as physically he was just too small to undergo such a surgery."

The distraught couple had even reached a point in the conversation where they were looking at the potential of palliative care or surgery with very limited chances of survival.

"At one point the odds of around 10 per cent were mentioned," says Marian. "Nobody wants to be in a position to make that decision for their child but for us, his parents, it was no option at all. It was die or try."

While walking the corridors, Marian recalled seeing the hospital motto on the wall - "every sick child deserves every chance".

"That stuck in my mind. This is his chance, even at a potential 10 per cent, this is his chance.

"Somebody has to fall on the positive side of the odds once in a while, why not him?" she says.

"He was our own little Christmas miracle. We hope his story is a small beacon of hope for other families who are newly diagnosed with the message to never give up the fight. We will be forever grateful to all the wonderful doctors and nurses."

Marian added that a cardiac consultant at the hospital told them: "I haven't seen a case of a child that's gone through as much as he's gone through and survived".

She adds: "We don't know if they know it, but when they fixed his heart they stopped ours from breaking."

The devoted couple took turns to stay at the hospital, most of the time thanks to parents accommodation and swapped shifts to stay with their little boy.

"Covid rules of one parent per child do make it incredibly hard," admits Marian.

Greek-born Twitter/CPL employee Rami had to take unpaid leave from work as an analyst in order for them to be able to take it in shifts.

But they still got to experience Christmas in the hospital, with little Zachary getting greetings by video from Santa Claus and Brendan O'Carroll and his wife Jenny.

"As Brendan said to us 'Somebody has to win the lotto' and we certainly feel that we have to finally have our little man home," beams Marian, after Zachary was finally allowed to leave the hospital.

"We have no doubt that it is thanks to heroic work of the team at CHI that saved his life, insists Marian, highlighting in her praise surgeon Mr. Lars Nolke and his team, Professor McMahon who looked after him before he even entered the world to Dr. Adam James his cardiologist at CHI, the work of all the intensivists and cardiac doctors, as well as the "amazing" ICU staff and nurses in Crumlin and Holles street.

"It took a big team but together alongside his own fortitude of course, our mighty little man made it and he came home for the first time just two days before Christmas," admits Marian, who is Senior Marketing Manager for Strategy and engagement at Groupon and originally from Kimmage in Dublin and now living in Ashtown in the western suburbs of the capital.

"This is our own little Christmas miracle. We hope his story is a small beacon of hope for other families who are newly diagnosed with the message to never give up the fight. We will be forever grateful to all the wonderful doctors and nurses."

Marian added that a cardiac consultant at the hospital told them: "I haven't seen a case of a child that's gone through as much as he's gone through and survived".

"We don't know if they know it but when they fixed his heart they stopped ours from breaking."

Anyone wishing to donate to CHI's Christmas appeal #helpkidsbekids can do so at childrenshealth.ie/donate


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