Cork mum: I worried my Arabella would not survive...but she's finding her feet everyday

When three-year-old Arabella O’Sullivan’s heart feels sore again, she must go and see the doctors.

“She knows her own heart,” says her proud mum, Freya.

“Sometimes, when my heart is sore, mammy brings me to see the doctors,” chips in little Arabella, from Mayfield.

She was born nine weeks premature in 2021, and so began a series of challenges that most of us wouldn’t encounter in a lifetime. Now, Arabella is thriving every day.

“She is pretty amazing,” says Freya, watching Arabella toddling off into her creche this morning, full of the joys of life.

Shortly after her birth, dangerously low oxygen levels indicated a critical issue.

Four days later, doctors diagnosed Arabella with a complex congenital heart defect, (CHD), Double Outlet Right Ventricle (DORV), with Ventricular Septal Defect, (VSD), and Pulmonary Artesia.

That’s a lot for any newborn to cope with, not to mention her anxious family.

“She bounced back,” says Freya proudly, marvelling at her little girl’s can-do attitude.

“I’ve witnessed first-hand how these challenges have shaped not only Arabella, but also, our entire family.”

There is strength in numbers.

“We live with my mother. The three of us are happy out,” says Freya. “Arabella adores her granny, and she adores her Cork great-granny. We are a team!”

Arabella’s difficult health journey has taught them all a few valuable lessons.

“We’ve learned to slow down and appreciate the beauty in small things,” says Freya.

Small things are big things.

“Moments of play, laughter and growth are valued and appreciated,” says Freya.

“Arabella’s growth, her journey, has taught me resilience, adaptability, and the importance of cherishing each milestone.”

How did mother and child begin their journey together?

“Arabella was born premature because of a placenta abduction,” recalls Freya. “I had a C-section at 31 weeks on June 23, 2021.”

Baby must have been very tiny?

“She weighed 1.33kg,” says Freya. “Less than a bag of sugar!

“Neither the nurses nor the doctors could see her in the incubator; she was so tiny.

“Arabella had to be intubated so that she could breathe.”

While doing their rounds checking Arabella one day, the doctors noticed an issue with her heart.

“They weren’t too concerned,” says Freya. “The doctors contacted a cardiologist in Cork, and they alerted Crumlin Children’s Hospital about Arabella’s heart condition.”

Tiny and vulnerable, when Arabella was born, doctors initially narrowed her condition down to two possible heart defects—one inoperable and the other operable. She was officially diagnosed with the operable condition.

Freya says: “Arabella was to live until the necessary treatment became available. I was 100% worried. My baby was so small, I worried so much that she wouldn’t survive.”

Time was of the essence.

“When Arabella was one day old, she was transported to Crumlin,” says Freya. “A heart specialist accompanied her in the ambulance to Dublin.”

Medical experts were aboard the ambulance, watching the tiny baby’s chest rise and fall in a whisper.

“Three doctors and a paramedic went with Freya heading to Crumlin,” says Freya.

One of Arabella’s ‘team’ stayed behind with her mum who was recovering after a C-section.

“My mum was brilliant,” says Freya. “She waved Arabella off from the ambulance bay in CUMH. We both prayed Arabella would be alright.”

Freya joined her daughter in Crumlin two days later.

“I was still in shock,” she admits. “I was focused on processing all the medical information. It was hard to process it.”

Freya and Arabella were in this together.

“I went into survival mode,” says Freya. “I hoped and I hoped that Arabella was in survival mode too.”

In order to have her first heart operation, and in order to survive, Arabella had to reach a weight of 2 kg.

“She spent the first seven weeks of her life under close observation to gain the strength and the weight needed for her first surgery,” says Freya.

Mother’s breast milk did the job.

“Breast milk has high protein,” explains Freya. “It was the best food for Arabella pre-surgery. Babies with heart defects burn more calories. The heart is pumping faster.”

What was Arabella’s first surgery to be?

“The first surgery involved the insertion of a stent (patent ductus arteriosus or PDA stent) procedure,” says Freya.

Arabella was united briefly with her ‘team’ in Cork.

“She returned to Cork NICH for another two months of care, which was only wonderful,” says Freya.

“In October, 2021, the stent was ballooned to improve blood flow.”

Things got more serious for the tiny tot, who was fragile but determined.

“On February 12, 2022, Arabella underwent a complex 10-hour open-heart surgery called the Rastelli procedure.”

The girl got more sustenance.

“She depended on an NG tube for nourishment until April, 2022.”

Freya clung to the hope that her daughter could survive and live her best life.

“I was going through the motions,” she admits now.

Open heart surgery is a big deal.

“I suffered from PSTD, and I suffered a bout of depression,” says Freya. But, like her resilient daughter, Freya rallied.

“I went back to work. That was amazing!”

Arabella has the most amazing hair.

“She has strawberry blond hair,” says Freya.

She has other assets.

“She tans so easily!”

Heart-wise, she came out of the woods, and she came back to her team in Cork.

“After a year in Crumlin, Dr Darragh Finn of CUMH looked after Arabella’s care,” says Freya. “She sees Dr Finn every three months.”

She is still being monitored by both Crumlin and Cork, with future surgeries planned

Arabella does suffer from bouts of asthma and Freya says her development is ever so slightly delayed.

“Starting creche was the best thing ever for Arabella,” says Freya.

This amazing girl is a live-wire.

“At one and a half, she could barely sit up,” says Freya.

Time was of the essence.

“Soon she was bum-shuffling, walking, talking, and running!” says Freya laughing,

“She’s finding her feet every day,” says Freya.

And she can talk for Ireland.

“She doesn’t shut up!” says Freya.

She doesn’t stop living her best life either.

“Arabella goes to CADA every week. She loves dancing and she loves playing football.

“She is happy go-lucky.”

“February is Heart Children month,” explains Freya, showing me the lovely calendar displaying children who have had heart surgery.

“The calendar is one way of raising funds for Heart Children,” says Freya.

“Often, parents need help with accommodation and other expenses when their child is undergoing treatment or surgery for heart defects.

“I was fortunate to be able to stay in Hugh’s House Mountjoy Square while Arabella was undergoing heart surgery. It was great.”

Arabella, Miss September in the calendar, sporting a glamourous red hair slide holding back her strawberry blond hair, is in good company with the likes of Lennon, Brett, Holly and Maggie.

“She can be a poser!” says Freya smiling.

She can be a little miracle. And she is part of a great team.

“That’s for sure!”

As part of Global Congenital Heart Disease, (CHD) Awareness Month this February, the charity Heart Children will host its annual ‘The Beat Goes On’ Conference in Dublin on Saturday, February 22, aimed at young people and adults with CHD, as well as their parents. Registration is free at www.heartchildren.ie or by phoning 01-8740990.