Riziah

Nine year old Riziah, from Chorley in Lancashire, was named after the word ‘resilient’ when she was just a little bump in her mum’s tummy, and this is why…Riziah was born with a rare condition called Heterotaxy Syndrome, which causes internal organs to be abnormally arranged inside the body. In Riziah’s case, the condition caused her heart to mirror image itself which means her heart has two left sides. Heterotaxy syndrome also affects her other organs, such as her lungs, liver, bowel and spleen.

Despite many challenges over her nine years, Riziah continues to live up to her name, and with the help of her family and Alder Hey, continues to flourish.

Mum Naomi said:

“When I was pregnant with Riziah, me and my partner Farzam were told at our 12 week scan that our baby would not survive. But we refused to give up. At 28 weeks we were told that our little girl had Heterotaxy Syndrome, which had caused a mirrored heart. She needed to be over 2kg when born to be able to have heart surgery. Amazingly, Riziah was born at 37 weeks, weighing 5lb 13oz, and at four days old was transferred to Alder Hey Children’s Hospital. At just nine days old she had heart surgery to repair a block in her heart, a coarctation repair & a PDA repair.”

Since then, Riziah has had 35 hospital admissions in her nine years She has had nine operations as well as other procedures under anaesthetic. Four of these were heart operations, two operations to

have a gastrostomy feeding tube, surgery on her ears, bowel surgery and other investigations. Most recently, Riziah spent nine weeks at Alder Hey when she had a big bowel surgery. Riziah’s bowels are malrotated due to her heterotaxy syndrome and this means that her bowels don’t sit in a normal position. Riziah had been suffering from vomiting undigested food over the past six months.

Mum Naomi said:

“We didn’t know if the surgery would work but we knew that our little girl couldn’t carry on and we knew we had to give her this chance. The surgery has been a fantastic success and she is putting on weight and thriving. She still lives with the possibility that her bowel could twist at any point but we are so happy with the surgeons at Alder Hey for what they did for her.”

Riziah has been under the care of Dr Ruth Trinick, Consultant in Paediatric Respiratory Medicine, at Alder Hey. Dr Trinick said: “Due to Riziah’s genetic condition she also has a lung condition called Primary ciliary dyskinesia (PCD) where the lungs can become damaged over time due to being unable to clear chest secretions properly. This means she requires daily chest physio to help prevent chest infections and complications. I’ve known Riziah for many years now and she’s always been so inspiring, fighting every challenge life throws at her with such resilience.”

A natural entertainer, Riziah loves to sing, dance and do gymnastic. Over the years, she has got to know and bond with many of the staff here, saying: “Alder Hey is the best hospital in the world. They have helped me with all my surgeries and the staff make me feel like I’m a celebrity when I’m there because I know everyone so much and they know me.”

Riziah absolutely loves the Matalan and Alder Hey PJ’s and dresses up with her mum Naomi, dad Farzam, brother Daniel and chocolate cockapoo Betty every year.