Belfast Telegraph

Rianna had her first heart surgery at just 3-weeks-old and now she wants your help to raise awareness for other kids just like her

By Claire Williamson

She had her first heart surgery when she was just three weeks old - and now Rianna Savage wants your help to raise awareness to help other children just like her.

Young heart patients are calling on people to wear something red today on Rock Red Friday in support of the Children's Heartbeat Trust.

The day aims to raise awareness of congenital heart disease - Northern Ireland's most common birth defect - and much-needed funds to support the work of the charity.

Eleven-year-old Belfast girl Rianna was born with pulmonary atresia with ventricular septal defect.

Pulmonary atresia means blood cannot be pumped to the lungs from the right ventricle through the pulmonary artery, which is blocked or missing.

She had her first operation at three weeks, and underwent open heart surgery at 18 months.

She was closely monitored for the next number of years until she had major surgery last summer.

Recalling what it was like watching her baby enter the operating theatre, mum Annette told the Belfast Telegraph: "It was awful, you are just helpless, her life is in the doctors' hands.

"You are signing papers and you have to put your trust in them."

Rianna, who has a phobia of needles, underwent a big operation last summer.

Annette said: "She was to go to London to have surgery, but it was suggested that she got a stent in, in Dublin.

"We went on July 12 and she was to get it the next day, and she ended up in emergency open heart surgery and had to get a new pulmonary valve."

The youngster was then transferred back to the Royal Victoria Hospital in Belfast, but after being discharged she contracted a lung infection, so she ended up being admitted again.

Rianna will have to undergo more surgery in years to come and will require years of monitoring.

This week she had a doctor's appointment and she took a list with her of activities she wanted to check she could do.

Rianna started secondary school in August and her mum said it had been brilliant in helping to cater for her.

Annette added: "She doesn't over-exert herself.

"I don't want to stop her doing things if she can do them."

The family say that throughout their journey with Rianna the support of the Children's Heartbeat Trust has meant they had people to turn to - and families to seek reassurance from.

Annette added: "The trust have been very supportive.

"When we were in Dublin they phoned and made sure we had everything we needed or they would provide it. She designed one of their Christmas cards this year and was very proud of that.

"It's fantastic. I thought we could have done it on our own, but she needs to know children, even at her own age, have heart conditions.

"The last two years we joined the Belfast group and it's been brilliant. Just meeting every month or when they have functions on."

Annette said more awareness was needed.

"For a parent it's more reassuring that you can turn to another parent and say: 'Is this what to expect?' Or: 'Is this the way it should be?'"

Lynn Cowan of the charity said: "By wearing red today you'll be helping raise vital awareness of congenital heart disease and funds for our work with local heart children.

"Every year over 200 babies are born in Northern Ireland with congenital heart disease, many of whom will undergo open heart surgery and need lifelong treatment and care."

Belfast Telegraph

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