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Unbelievable journey of miracle child expected to die in before birth

Written by on June 23, 2020

The mother of a four-year-old child with a rare ‘mirror heart’ condition has spoken about her unbelievable journey.

Riziah Moazzeny from Chorley, was born with a rare condition called Heterotaxy Syndrome, causing internal organs to be abnormally arranged and her heart to be a ‘mirror image’ of itself with two left sides.

After just nine days the baby girl was fitted with a pacemaker while undergoing two serious repairs on her heart and spending four weeks in Intensive Care.

Doctors were convinced that baby Riziah would die in the womb after just 12 weeks but her mother, 34-year-old Naomi Moazzeny, never gave up on her child.

Riziah was just under 6lb when she was born.

“She’s quite a unique individual to say the least,” Naomi told LancsLive.

“When you meet her your wouldn’t believe any of these things are happening to her, she’s happy and smiling, she won’t let anything stop her.

“She’s a strong little girl, if you think about what she’s already gone through just to be born, you realise she’s got a purpose in life.”

Naomi and her husband Farzan Moazzeny, 40, were given devastating news by doctors, just 12 weeks into Naomi’s pregnancy.

Their unborn child, who was only the size of a lime, had an 11mm sack of fluid coming down her spine, known as a Cystic Hygroma.

Farzan with Daniel, Riziah and Naomi, at Alder Hey Children’s Hospital.

Naomi said: “I remember the sonographer handing me these images and telling me: ‘this will be a nice memory of your baby’.

“I was so shocked, I didn’t realise how serious Cystic Hygroma could be. We were offered termination, her heart wasn’t beating properly and so wasn’t able to drain away any of the fluid.

“We were told that my pregnancy could just end at any time.”

But Noami was against terminating her child, her and Farzan would continue with the pregnancy.

At 17 weeks the doctors had good and bad news, the Cystic Hygroma has gone but their unborn child had complete heartblock.

The Moazzeny family altogether.

“Her heart was going at about 60 beats per minute,” said Naomi.

“During pregnancy they should be at around 130 beats per minute. We were told that she must have a complex heart condition but until 28 weeks we didn’t find out exactly what that was.”

After 28 weeks of pregnancy, Naomi was told that her child would be born with Heterotaxy Syndrome.

The condition would later manifest in Riziah having a mirrored heart, multiple spleens, her liver and bowels being in the wrong place along with a myriad of other health conditions.

“This word resilient kept on popping up with doctors,” said Naomi.

“I remember looking up the word, it means strong, being able to bounce back, so me and Farzan decided to nickname my unborn child ‘Baby Ressie’.

“All our updates and news were about Baby Ressie. When she was finally born we decided we needed to use that as part of her name.

“So we called her Riziah, it’s a strong name and she is still living up to that name now.”

Riziah with her 11-year-old brother Daniel.

Riziah was born on April 11, 2016, weighing just 5lb 13oz and was immediately taken into the intensive care unit at Alder Hey Children’s Hospital.

After just nine days she had life saving heart surgery to stop the heart blockage, at times her heart beat dropped to a rate of just 52 beats per minute.

Riziah was so small that when her pace maker was fitted it had to be placed under the rib cage rather then the abdomen wall.

She also had two separate repairs on her heart and was on a ventilator for a month.

Naomi said: “She came off the ventilator on May 1, that was the day she was due to be born.

“I’m not one to shy away from difficulties, I always thought I would be able to face it, whatever problems she was going to be born with.

“Whatever came our, we were going to deal with it, and we did.”

On a visit to Derian House Children’s Hospice in Chorley.

But Riziah’s birth was only the beginning for Naomi and Farzan.

The four-year-old is prone to heart infections due to a condition called Patent Ductus Arteriosus (or PDA) which means the organ is dotted with holes, the largest of which can’t be fixed unless the smaller ones close up naturally.

To make matters worse she has multiple spleens that don’t work, meaning her immune system is constantly low.

“Any time she picks up a little cough or cold she has to go to hospital,” said Naomi.

“I couldn’t tell you how many times she’s been admitted, at least 50 times. That’s why this virus has actually helped a little, with everyone in quarantine its the longest she’s gone without picking up an infection.”

Riziah as Snow White at Alder Hey.

Riziah has also been fitted with a feeding tube because she burns excessive calories just to keep her heart going.

Naomi couldn’t even take her swimming without her turning blue or getting too cold and feinting.

The 34-year-old said: “That’s where Derian House Children’s Hospice came in.

“I enquired about using their hydrotherapy pool for Riziah and now her and her brother Daniel go along.

“It’s just amazing for us, all the staff there are like one big family and they adore your child when they go.”

At some point in the future Riziah will have to face the prospect of open heart surgery, depending on when her PDA can begin to rectify itself.

But for now, the four-year-old is just busy being the lovely and happy child she has always been, despite her problems.

“All I can describe her as is sassy and feisty,” said Naomi.

“She loves dressing up, she’s got boxes of dressing up stuff. She was battling sepsis in January and she was prancing around the ward in her Snow White costume.

“She will always put on smile and know that she’s got everyone wrapped around her little finger.”