Tetralogy of Fallot: baby has open heart surgery after being diagnosed with rare condition

A baby had lifesaving surgery after she was diagnosed with a terrifying heart condition.

Seven-month-old Aurelia Robinson - who is an identical twin - underwent complex heart surgery and spent more than a week in intensive care last month.

Megan Ramsey, 29, says her “mother’s intuition” proved correct when her daughter became ill with the condition called Tetralogy of Fallot (TOF). TOF is a congenital condition caused by a combination of four heart defects.

Thankfully, open heart surgery at the Freeman Hospital in Newcastle saved Aurelia’s life and she has now made a full recovery.

‘I knew how it felt to be in her shoes’

And she is not the only one in the family to have had an experience there - Megan had herself had surgery in the same ward 23 years previously.

Megan was just six when she too saw her life saved by the cardiothoracic team at the Freeman Hospital - and even stayed in the exact same ward.

Megan, from North Shields, said: “It’s a miracle I survived, but to then go through the same experience again with my own family is crazy.

“In a way I felt I was the best person to deal with it because I knew exactly how it felt to be in her shoes.”

Over the first few months of Aurelia’s life, Megan and partner David Robinson, 34, couldn’t help but compare her development to twin sister Beatrix.

The couple found that Aurelia was more sickly, not growing as quickly and seemed generally unwell a lot of the time.

During Aurelia’s eight-week check-up at the Royal Victoria Infirmary, doctors found a heart murmur and sent her for a referral.

But Megan didn’t hear back for months, in which time her daughter was becoming more and more sick.

‘I decided to rush her to hospital’

Aurelia was booked in for an outpatient appointment on 8 July , but Megan decided she couldn’t wait and took her to A&E three days earlier.

Upon her arrival, doctors were immediately concerned about Aurelia’s condition and she was taken into a side room where she was put on high flow oxygen.

They did scans and blood tests - and that’s when Megan first heard the news she’d been expecting.

Megan, a mum-of-three, said: “She was supposed to have her outpatient appointment on the Friday, and we went into A&E on the Tuesday.

“She was having these grizzly spells and her hands and feet were going blue - she just looked awful.

“She was so lethargic and couldn’t keep her head up, and that’s when I decided to rush her to hospital - I couldn’t wait any longer.

“As soon as we got to the RVI they knew something was wrong - we couldn’t even sit down.

“We were taken into a room and there must have been about 15 doctors from different departments around her bed which was terrifying to see.

“They sat me down and said she had TOF which was difficult to hear, but it wasn’t that much of a shock to me.

“I used to be a healthcare assistant on a maternity ward so I’d heard of her condition before.

“A part of me knew all along that this what was making her so sick.”

‘Her life will be different but she’s doing well’

Megan and Aurelia were rushed to the Freeman Hospital that same evening (5 July), where she later underwent emergency open heart surgery.

After more than a week in intensive care and a number of scary moments, Aurelia was transferred to ward 23 at the hospital.

And, remarkably, some of the staff there were around more than two decades ago when Megan herself was a patient.

Megan was diagnosed with tuberculosis when she was aged just six, leaving her in need of a life-saving thoracotomy.

A thoracotomy is a surgical procedure in which a cut is made between the ribs to see and reach the lungs or other organs in the chest or thorax.

Now, the thankful family are planning to fundraise to support the Children’s Heart Unit Fund and staff at the Freeman ,who have supported them through this horrendous time.

“I was six and somehow I picked up TB,” Megan said. “I spent three weeks on ward 23 just like Aurelia which is just crazy to think.

“Going back there supporting my daughter was so surreal as it’s a miracle I even survived back then.

“Because of my experience I was as best qualified as I could be to support her through this whole ordeal.

“Now, after making a full recovery, Aurelia doesn’t stop smiling.

“We know she has TOF which is a lifelong condition and her life will be slightly different - but she’s doing extremely well.”