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Meet Evie who was named after our hospital

Posted on Monday 30th September 2019
Evie Cox in a blue dress with her parents and a sign that says 150

Evie Cox attending a 150th birthday event at our hospital with her parents

A family have paid the ultimate tribute to our doctors and nurses by naming their daughter after Evelina London.

The parents of Evalina ‘Evie’ Cox wanted to do something special to thank Evelina London staff. Evie's parents, Justin and Jo from Margate in Kent, chose their daughter's name because they were so happy with the care she has received. Evie has undergone two open heart surgeries and multiple procedures to mend a number of life-threatening heart defects, all before her second birthday. 

Jo, a hypnobirthing instructor, said: “We’ve had such incredible care from the staff since before she was even born, so we decided to name her Evalina. It’s such a pretty name but also a tribute from us to the hospital that treated her.

“We added our own stamp by changing the spelling slightly, and we call her Evie for short, but we just wanted to give thanks to all of the hospital staff. We know she wouldn’t be here without them."

After something unusual was detected on her 20-week pregnancy scan, Jo was referred to Evelina London. It was discovered that Evie’s two main blood vessels, the pulmonary artery and the aorta, were swapped over. Known as TGA (transposition of the great arteries), this means that blood flows to the lungs and picks up oxygen but is then pumped back to the lungs instead of travelling around the body. The blood that flows around the body is unable to reach the lungs to pick up oxygen and continues circulating, which means it can't function properly. Doctors also discovered that she had multiple other complex heart problems, including only one coronary artery instead of two. Without surgery for this extremely rare defect shortly after birth, Evie would not have survived.

Jo, 41, said: “We were in shock. When we heard the extent of Evie’s conditions, we expected the worst. It was just so much to take in.

“Once we’d got our heads around it all, we were reassured that Evelina London would do their best to save her as soon as she was born.”

Jo gave birth at St Thomas’ Hospital, which is co-located with Evelina London, so Evie could be assessed by expert clinicians as soon as she was born. In most cases, babies with TGA have the necessary operation to correct the defect shortly after birth. However, Evie was unable to have this operation right away due to her other heart defects and required further treatment first.

Her first surgery took place at just six days old and after her first open heart surgery at six weeks old, Evie suffered a cardiac arrest.

Justin, 50, said: “It was the most terrifying thing. Seeing the doctors over Evie while she was still so tiny trying to start her heart again just didn’t feel real.”

Baby Evalina Cox in a cot at the hospital with her dad.Doctors battled to save her and after an hour and twenty minutes of CPR (cardiopulmonary resuscitation), Evie’s heart began to beat again. Once stabilised, she was put on a life-saving ECMO (Extra Corporeal Membrane Oxygenation) machine for five days. The ECMO pump does the job of the heart and lungs. It continuously takes blood from the body, adds oxygen and removes carbon dioxide and then returns it to the body. Evie spent a further six weeks at Evelina London and during this time suffered further complications, including a collapsed lung, seizures and a stroke.

Justin, a PE teacher, said: “After everything that had already happened, to then have a stroke, you wonder how much she can take. Thankfully her brain function was not damaged at all and she made a full recovery.”

Jo and Justin were finally able to take their daughter home when she was 13 weeks old but knew she would need more treatment in the future.

On 5 November 2018, when Evie was 19 months old, she underwent her biggest operation yet, which her parents named ‘the big fix’. The open heart surgery, known as the Nikaidoh procedure, is a technique used to treat people with TGA and involves swapping the pulmonary artery and the aorta so they connect to the correct chamber. The nine-hour surgery was undertaken at Evelina London by Mr Caner Salih and Mr Reza Hosseinpour, an expert from Seville in Spain.

Mr Salih said: “The Nikaidoh procedure has been performed very few times – the surgeon who devised it only did around 20 himself. Mr Hosseinpour and I had each done around 10 in our careers to date, so we decided to combine our experience.

“As Evie already had so many surgeries and because she was born with one coronary artery, Mr Hosseinpour and I both agreed it was the most complex Nikaidoh operation we’d both performed.”

Jo said: “I can’t describe the emotions we felt after the operation was over. Since Evie was born, I think we’d felt every emotion possible.”

The couple were told that normally patients should stay in hospital for two weeks following the operation, but Evie recovered so quickly that she was ready to go home six days later.

Evie Cox smiling with her hands up in the air and lots of toys.Justin said: “We couldn’t believe it. After everything she’d been through, Evie was back to her normal, ridiculously energetic self just a week later. She’s now a happy and healthy two-year-old.”

Her parents have been told that she shouldn’t require any further procedures until she is a teenager.

Mr Salih said: “Evie is such a lovely little girl and it’s amazing to see how she is doing after all of her surgeries. Her parents have been fantastic throughout such hard times and it’s extremely gratifying to see such a happy family.”

Just a few weeks after Evie’s ‘big fix’ operation, the family were invited to attend a very special royal engagement.

“When we heard The Duke and Duchess of Cambridge were visiting Evelina London, we jumped at the chance to attend,” said Jo.

“Evie had been a little sick the week prior and we were a bit worried she might not be well enough to go but she made a pretty miraculous recovery just in time. Evie had a great day and even ran up behind The Duchess and tapped her on the back, so she got some one-on-one time with the Royals.”

Now the family are looking forward to the future.

Justin said: “You wouldn’t know she’d been through so much. We’ve always treated her like any other child. She’s so strong-willed and determined. We have trouble holding her back sometimes - it’s just onwards and upwards now.”

Our Evelina 150 Stories

Evie's journey is part of a series of Evelina 150 Stories that we are sharing in celebration of our special 150th anniversary year. Throughout 2019, we are highlighting some of our amazing patients and also encouraging them to blog about their experiences.

150 years ago, Evelina London was born out of love, when Baron Ferdinand de Rothschild founded the hospital in memory of his wife, Evelina. Since 1869, we've been saving lives, improving health and inspiring better futures. 

Find out more about how we are marking our special birthday: evelinalondon.nhs.uk/150.

 

 

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