‘One-of-a-kind’ girl born with heart outside chest has pioneering surgery

Vanellope Hope Wilkins made medical history when he was born with his heart out of his body in 2017.

Described by experts as “one of a child,” Vanellope had three operations to place his heart on his chest due to an extremely rare condition called Ectopia Cordis.

The hospital where he was born, the Glenfield hospital in Leicester, says he does not know of another case in the United Kingdom where the baby has survived.

Now, seven years, Vanellope has undergone innovative surgery to rebuild a protective cage around his heart, using his ribs.

The BBC received exclusive access to the theater, when Operation Tok Place at the East Midlands Congenital Heart Center, based in the Nursing of Leicester Royal, last Wednesday.

WARNING: This story contains an image of surgery

It is early in the morning outside the theater, and a team of specialized medical experts meets for an informative session to discuss unprecedented surgery that will be carried out.

Vanellope still has no sternum, leaving his heart covered by a thin layer of skin.

Surgeons have created a plan to use their ribs to form a protective cage inside their chest.

Pediatric surgeon Nitin Patwardhan was one of the 50 Vanellope medical teams on November 22.

Now he is ready to play a main role again in surgery, which had never had such a bone before.

“I would mention if I say I don’t get nervous,” he says. “But having bone in this professional for so many years, you look forward to it because at the end of the day, you are doing something that will change someone’s life.”

He remembers how “everything was unknown” when Vanellope was born, because no one in the country had dealt with a similar case.

A handful of children in the United States have also survived this condition.

Ectopia Cordis affects only a few cases per million births, and Vanellope received a probability of less than 10% survival.

But she challenged those chances and allowed her home after 14 months in the hospital.

Since then, Vanellope has had to use an orthopedic device around his chest to protect his heart.

It has complex medical needs, which require individual attention, 24 hours a day. She is autistic and nonverbal.

Mama Naomi Findlay, 39, who lives in Clifton, Nottinghamshire, described her daughter as “a happy little thing” that “brings a lot of joy and much happiness.”

She added: “I am proud to see the activity of how far it has come, what it has overcome and what it is achieving. It is a true strength and brave journey … it is so good.”

Having to kiss your daughter goodbye in the theater is difficult and tears flow.

“A lot of anxiety, a lot of concern and so many emotions,” she says. “For me, the greatest fear is to deliver it and not recover it.”

The team waiting at the theater includes specialists from the congenital center of the heart, the Leicester Children’s Hospital and a visiting cardiootoral surgeon at the Great Ormond Street hospital in London.

Congenital cardiac surgeon consultant, Ikenna Omeje, operated in Vanellope only 50 minutes after she was born.

Memories are many “scratches” among surgeons, because the condition was very strange.

“It was exciting for everyone, it was something we had never seen before. So you did the news, not only within the United Kingdom, but around the world,” he says.

Explaining the current procedure, the points to a 3D scan of the Vanellope chest and describe how your heart has joined the thin layer of skin that protects it.

Separating it “is risky,” he confesses.

“You can damage the container trying to enter the thoracic cavity,” he said.

Now seven years, surgeons decided that Vanellope had reached the right age for reconstructive surgery to form a permanent structure around his heart.

Vanellope is placed for the first time in a derivation machine, which temporarily takes care of the functions of the heart and the lungs.

This allows your heart to disinfle, allowing the “very complicated” procedure to separate part of your heart, the right ventricular output tract, and the pulmonary artery from which it has hit your skin.

Next, the bilateral rib osteotomy takes place, which implies breaking Vanellope’s ribs on both sides to move them to form the protective cage around his heart.

Carrying out all procedures at the same time, in a patient with Ectopia Cordis, had never been performed in this country, says the team.

The extremely complex procedure lasts more than nine hours. And it is a success. Surgeons are delighted.

Mr. Omeje is Beander, since he says that “it was much better than we expected.”

He describes how he examined a radiography of the Vanellope chest after the operation, and called it “really beautiful.”

Mr. Omeje called Vanellope “unique” and explained how satisfactory it was that everything was so good.

“The best satisfaction we get from this is when you get a mother’s texture to say ‘Thank you, you are incredible,” he says.

“I think personally, I just did my job, but it has made a difference for some and that is very satisfactory.”

Vanellope is tasks for the pediatric intensive care unit for children and will spend some time in the recovery of the hospital.

After a few weeks, you can take off your protective orthopedic device and win, replicate any additional surgery in the future.

His mother called NHS as “incredible”, and says he can’t wait for his home with his older brothers and his little sister.

Looking towards the future, he hopes that this surgery will improve “very good quality of life of Vanellope”.

And Naomi says this time is ready for the long trip ahead.

“When [Vanellope] I was born I was afraid. It was very scary for me, but this time I am ready.

“We have this,” he added.