How Zayed’s legacy gives new hope to sick children

Sheikh Zayed Institute for Pediatric Surgical Innovation in Washington is transforming surgery for children.

Mohamed Alaryani, 12, with his father Saif, and brother at the Sheikh Zayed Campus for Advanced Children's Medicine at Children's National Medical Centre in Washington, DC. Mohamed has Spina Bifida and has been coming from the UAE to the the Sheikh Zayed Campus for medical treatment. Launched in September 2009, the centre is redefining what is possible in surgery through an innovative, integrated research. Evelyn Hockstein for The National
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Washington // When Mohamed Al Aryani moved from Al Ain to Washington last year, the 12-year-old football fanatic had never walked without crutches, let alone played sports with cousins and friends.

Mohamed and his parents had travelled to the US capital for years for specialist care at Children’s National Medical Center to treat his congenital back condition. In December, doctors were finally able to operate.

Mohamed smiled mischievously as he showed off his new-found ability to walk backwards through one of the hospital’s corridors without crutches.

“Mohamed wasn’t able to walk freely before,” said his father, Saif. “Now after surgery he is less dependent on crutches, he has much more balance.”

More importantly, said Mohamed, a diehard Real Madrid fan, he is playing football at the school he now attends in nearby Virginia.

“If you have a child that is sick you do your best to sacrifice everything else, and that’s what we did for Mohamed,” Mr Al Aryani said. “We left our home, we left our family, we sacrificed everything just for him to be treated here and get better.”

Mohamed is one of hundreds of Emirati children who over the past two decades have been treated at Children’s National, one of the world’s premier paediatric care facilities. But the hospital is no longer just the primary destination for special care for the country’s children.

In 2009, Abu Dhabi donated US$150 million (Dh550.5m) to the hospital to help establish the Sheikh Zayed Institute for Pediatric Surgical Innovation, where doctors, scientists and engineers are already transforming surgery for children.

The partnership is also central to Abu Dhabi’s plans to transform health care in the UAE by developing domestic initiatives and facilities and training a generation of young Emiratis to be doctors and researchers.

“The relationship [with Children’s] is integral,” said the UAE Ambassador to the United States, Yousef Al Otaiba. “Health care and education are two of our biggest priorities back home, and we like partnerships where our partners show commitment, and Children’s has definitely shown commitment to the UAE.”

The UAE’s relationship with Children’s National began more than 15 years ago as an increasing number of Emirati families sought care with its specialists. But the engagement with the Health Authority — Abu Dhabi deepened after the Sheikh Zayed Institute was established.

The donation was the brainchild of the Washington philanthropist, Joseph Robert, whose own experience with chemotherapy prompted him to put executives at Children’s National in touch with potential donors to focus on research that would reduce the pain and intensity of treatment for seriously ill children. Robert, who died in 2011 from cancer, took the idea to his friend Sheikh Mohammed bin Zayed, Crown Prince of Abu Dhabi and Deputy Supreme Commander of the Armed Forces.

As a result of the partnership, specialists at Children’s National have worked with Abu Dhabi officials on health policy as well as standards and training to promote areas such as maternal and child health, access to genetic testing and screening for newborns.

In 2011, Abu Dhabi introduced an initiative for all babies to be tested for congenital heart defects before they left hospital after birth. More than 50,000 newborns have been screened and 23 babies’ lives saved as a result, said to Gerard Martin, a paediatric cardiologist and director of global services at the hospital.

“It wasn’t so long ago that Abu Dhabi had infant mortality that they were not happy with,” Dr Martin said. “But now they are beating the US in infant mortality and have made major strides.”

Researchers at the Sheikh Zayed Institute are working with Emirati colleagues in the UAE on innovations aimed at the particular needs of the country. They are close to finishing a facial recognition device that can be attached to a smart phone and be used to detect genetic issues in children.

“The institute is based upon making treatment more precise, less invasive and pain free,” Dr Martin said. “The work we’re doing here is easily translatable to what is needed in the Emirates where there is a higher complexity of care” because of a higher prevalence of congenital conditions in children.

That complexity is spurring innovations at the institute that would revolutionise aspects of paediatric surgery and care. On a recent tour of the hospital’s laboratories, researchers demonstrated a robotic surgery machine that can put in stitches ten times faster than a doctor.

They were also working on an ultrasound device that will be able to destroy tumours with more precision and with less harmful side effects than radiation. Another engineer displayed a 3D-printed replica of conjoined twins that helped surgeons successfully separate the siblings.

Perhaps the most significant innovation that is nearing completion is a device that objectively measures the intensity of pain, a metric that until now has been very difficult to assess, especially in young children.

The partnership between the UAE and the Children’s National is also aimed at attracting young Emiratis to the medical professions, which serves Abu Dhabi’s 2030 plan to diversify the economy towards knowledge-based professions occupied by nationals, as well as raising the country’s healthcare system to world-class levels.

Emirati medical students can apply for summer internships at Children’s National to train in innovation management and paediatric medicine, and this summer the second Emirati doctor will begin a three-year residency here.

Mr Al Otaiba worked closely with the hospital to help get the Sheikh Zayed Institute off the ground. At the time, he never thought that his own child would need treatment.

“You’ve built this relationship over five years, given this grant, gotten to know everyone at Children’s, under the assumption that we’ll probably never need them for our own family,” the ambassador said. But last year his unborn daughter was diagnosed with a growth on her lung that would require surgery only four months after she was born.

“When you realise your child needs serious health care … it’s pretty scary,” he said. “Fortunately there was this relationship between the Abu Dhabi government and Children’s – if you didn’t believe in karma before something like this happens, you believe in it now.”

That experience prompted Mr Al Otaiba to co-chair the annual charity ball at Children’s National this year, along with his close friend, the Fox News anchor Brett Baier, and their wives. Mr Baier’s six-year-old son has undergone multiple surgeries at Children’s National.

“You can chair 100 balls and it wouldn’t come close to paying them back for treating your child, but it was the one thing we could do, organise a ball that raises a lot of money,” Mr Al Otaiba said.

The charity fund-raising drive is shaping up to be one of the most successful in Washington’s history, and the results will be announced at the ball, which takes place tomorrow. The drive has raised $7.8m as of last week, according to Mr Al Otaiba.

The UAE’s donation and involvement with Children’s National is also part of Abu Dhabi’s engagement with Americans through aid and disaster relief, and is a way to project the country’s values.

Back at the hospital, Mohamed said he wants to be a pilot when he’s older, as his family prepare to leave for their temporary home, a nearby hotel where families from across the GCC stay while their children receive care at Children’s.

In the evenings, now that he is more mobile, Mohamed likes to help serve coffee and food at the makeshift hotel majlis attended by all the kids’ fathers. “He cracks jokes, socialises, everybody knows Mohamed,” Mr Al Aryani said. “They call him the boss.”