A Dh551 million donation from Abu Dhabi is funding a unique centre of excellence at a Washington children's hospital that will be dedicated to revolutionising paediatric care. Sophie Roell meets the team behind the project. It's a hot summer day in Washington, and the road behind the main hospital is teeming with construction workers. The building of the Children's National Medical Center is in that 1970s-style of architecture, with lots of black glass, and looks a little like a spaceship. But inside, a lot of effort has been made to make it a nice place for children, with hot air balloons going up the main atrium. Washington may be the capital of the United States and home to many a billionaire, but the District of Columbia has huge pockets of poverty. Some 30 per cent of children in DC were living below the poverty line in 2009, according to the National Center for Children in Poverty.
The medical centre, known simply as Children's, is the largest provider of primary care to children in DC, and foots a bill of about US$50 million (Dh184 million) a year in uncompensated care - in other words, care that its patients could not afford or insurance wouldn't cover. At the same time, it's a centre of expertise for children's diseases, boasting more than 400 paediatric specialists. Children fly in from the rest of the US and around the world for cardiac surgery, or a kidney transplant, or to be operated on by the hospital's neurosurgeons.
No parent wants to see a child in pain - of any kind, ever. Harder still is the idea that a child or tiny baby should have to go through surgery, or even multiple surgeries, as a result of an illness or accident. Last September, the Government of Abu Dhabi donated $150 million to Children's. It's a huge amount of money, a donation that might normally fund the construction of a new building or some other capital project. Instead, it is being used to facilitate a bold bid to revolutionise children's surgery.
"The vision is with children and their families - how to change radically the outcomes and results of surgery for children," explains Dr Kurt Newman, the surgeon who is the acting vice-president of the Sheikh Zayed Institute for Paediatric Surgical Innovation, as the new research institute is called, in honour of nation's founder. "Most research or discovery has traditionally been incremental - building a little bit on what was done before. What this institute proposes to do is work backward. If a child were having surgery, what would you like that to look like? What would the optimum outcome be?"
The hospital has allocated the Sheikh Zayed Institute some 6,700 square metres of space on the sixth floor. It is here that building work to create a world-class research facility is in full swing. Lee Barton, the project manager, estimates that there are between 55 and 60 workers on the site at any time, though this is likely to double as they aim to complete construction in record time. "Our goal is to be substantially complete by the end of the year, with occupancy in the first quarter of next year," Barton says.
As we walk around, he shows me the rooms where the latest in medical equipment, including, for example, a gene sequencing machine, is going to be housed, and the open-plan layout of the labs. Co-operation between disciplines and between researchers and doctors who wouldn't normally work together is a central feature of the institute's philosophy. Through the black glass, you can see the Washington skyline, with the Washington Monument and Capitol in the distance. On the other side is a rooftop helicopter, stationed on its pad, a visual reminder of the life-and-death cases that end up at the hospital.
But more than the physical space, it's the doctors who come to work at the institute who will define its success. Since last September, recruitment has steamed ahead. Recent recruits include Timothy Cane, most recently at Children's Hospital in Pittsburgh and an expert in minimally invasive surgery, and Craig Peters, a specialist in paediatric urology and robotics who is leaving an endowed chair at the University of Virginia to join the institute. "We were stunned how quickly we heard from amazingly talented people," says Deborah Brown, the institute's executive director of recruitment efforts. "They heard about the gift and they wanted to come. Within a day - on the day of the announcement we had calls from people saying they wanted to come."
Dr Newman tries to explain why it's such a tempting offer. "The opportunity appeals to people that want to make a difference," he says. "There's a lot of anxiety right now in the US about medicine, and about healthcare reform and what it means. People are having to work harder and harder. So to have a place where you can say, 'Look, you're not going to have to worry about that right now, what we want you to do is tackle this problem of how to make surgery better' ? that's incredibly exciting, especially for someone who has wanted to do that their whole career but has always had to work at the margins. An hour here, or two hours there, always scrambling for the next grant. They may have wonderful ideas locked up in their head, but never had the time, or a place to work with other people, to put some of those ideas to work."
The ideal surgery for a child, of course, is no surgery at all. A key objective of research efforts is to find other solutions so that surgery isn't even necessary. "If a child has a problem that requires surgery, maybe in the future they won't need surgery at all," says Dr Newman. "If they do need it, the scars and incisions would be tiny, the pain would be minimal or non-existent. It would have been very precise and you wouldn't need to do it again. That is the vision."
The key to getting their lies in technology. "We're taking some of the emerging technologies - computers, genetics, robotics - and bringing them together and merging them," explains Dr Newman. Efforts are focused on four areas. Firstly, on measuring and minimising pain. Secondly, on bioengineering, using imaging and advanced technology to "see" inside a child's body without the need for incisions. Thirdly, on immunology, trying to use a child's own immune system to fight illness and cure disease. The last focus is genetics, namely personalising treatment depending on the unique genetic makeup of each child or patient.
As is becoming clearer and clearer from modern medical research, the same disease and response to treatment can vary wildly from person to person, and successful treatments will increasingly take that into account. The close relationship between the institute's four initiatives is key, according to Dr Zenaide Quezado, one of the principal investigators of the institute's pain initiative. "I focus on the pain aspect, but that's intricately related with the genetics, with the immunology and the imaging," he explains. "The ability to work together, towards the same goal, with a geneticist or an immunologist who is a world expert in the field is unique. That is what lured me here, because I was at a great place and had a very good job."
Meeting the doctors who are leading the institute's various initiatives helps bring the whole thing to life. I have lunch with Dr Quezado and Dr Julia Finkel, the pain initiative's other principal investigator. The two are very much a team: Dr Finkel takes care of patients, Dr Quezado works in the lab, and they collaborate closely. Their aim is to eliminate pain in surgery. "It's a very ambitious endeavour," says Dr Quezado, who until recently headed a lab at the prestigious National Institutes of Health in Washington, and brought over her team to the Sheikh Zayed Institute. "Can we really eliminate pain in children? We're going to strive for that. I think all of us recognize the challenge before us, but I think we'll make great headway." (see sidebar for more)
Another insight into what the institute is trying to do is provided by the very lively Dr Raymond Sze, a bioengineering expert and chief of the diagnostic imaging and radiology division at Children's. He comes into the room practising his Arabic. "We've been taking a little Arabic," he explains. "We want to be able to say 'Thank you for your kindness.'" Dr Newman describes the history behind the gift. More than a decade ago, he operated on a teenage boy called Joe Robert, whose chest wall had not formed properly. It was a complex operation that required rebuilding his chest wall. But it was successful, and it changed Joe's life. He went on to serve in the Marines. "It's a great story and he's a great kid."
But the operation took eight hours, and the boy spent nearly a week in the hospital. "His father saw he was in a lot of pain," recalls Dr Newman. "He saw all the ramifications of surgery. And he saw that if you could do surgery less invasively, or if you could eliminate pain, that it would have a great impact." The father, also called Joe Robert, became a huge benefactor to Children's, donating US$25 million 9PLS CONVERT. Subsequently, he became friendly with Sheikh Mohammed bin Zayed, Crown Prince of Abu Dhabi, and discovered he might also be interested in funding programmes and research at the hospital, which is how the idea for the Sheikh Zayed Institute was born.
Dr Sze would like to see the institute apply new minimally invasive techniques being used on some adult cancers and diseases to paediatric cases. "Conventional surgery involves a large wound, big retractors, and a lot of damage, frankly. All that pulling, cutting, chopping and squeezing is very traumatic," he says. "So rather than a big incision, and a lot of loss of blood, a lot of pain, and a huge hospital bill, can we kill the tumour through a tiny needle-sized hole? By applying heat energy and understanding the biology of tumours, you can heat it to 1,500 degrees over two minutes and it will progressively kill the cells in a very controlled zone. Then the child has very little pain, a tiny incision, and leaves the hospital the next day with a small hospital bill. It's safer, cheaper, better and faster."
Such techniques are already being used on breast cancers and in the treatment of uterine fibroids. "There is no real reason you can't apply this to paediatric cancers," says Dr Sze. "There are fake reasons, like, we've always done the open surgery and it's hard to change. But there are no real reasons." Dr Sze is also focusing his efforts on ways to avoid surgery altogether, by creating a nanoparticle which can act as a kind of homing pigeon, binding itself to the cancer and then potentially destroying it in a variety of ways - by carrying say, a chemotherapy agent, or destroying the cancer cell's energy source, the mitochondria. It's a more targeted approach than the current chemotherapy, which targets all fast-dividing cells in a patient's body and has devastating side-effects, including, of course, hair loss. "What we're proposing is something completely different which is specific to that cancer, in that patient, at that time, and in that place," says Dr Sze.
The US$150 m donation from Abu Dhabi allows the hospital to focus on an area that has traditionally been underfunded. Congressmen all worry about prostate cancer, and there is never any shortage of funding for research into prostate cancer. But children's medicine is often sadly neglected. "The problems that children have are fewer in number, and the diseases are frequently rarer," says Dr Newman. "There are not as many doctors working on them, and the work may not be as profitable." As a result, research and advances in paediatrics tend to move behind adult medicine, often just treating children as mini-adults ? which they are not.
In this context, US$150 million for research into children's surgery is likely to make an enormous difference. "It's a huge deal, a huge bonus, to apply this amount of resources to what could be viewed as a very narrow area of focus. It gives us the opportunity to have a big impact," says Dr Newman. Not that it's all going to happen overnight. "We're still in the early phases of assembling the team, negotiating the contracts, drafting the players and creating the field they will play on," says Dr Newman. "It's an exciting phase, but there's also a managing expecting aspect to it. I'm sure we're going to have some failures. But we're going to have enough opportunities that I know there are also going to be a lot winners."
And those winners, he hopes, will be shared with all the world's children. One of the institute's programs is focused on bringing people from around the world to study, train and do research there. "It may be a few years away, but we can change the experience and outcome of children's surgery," says Dr Newman. "We want to apply those techniques and discoveries, to train their doctors. Whether it's new medicines to eliminate pain, or new ways to do surgery, we want to bring the things we learn to Abu Dhabi and elsewhere around the world."
One of the first tangible results of the research made possible by the gift from Abu Dhabi is likely to be an instrument that can objectively measure pain, much like machines can currently measure your blood pressure or heart rate. This is critically important for babies and other patients who are non-verbal and incapable of telling a doctor when they are suffering. "You can look at positions and grimacing," says Dr Finkel, of babies born prematurely. "And you can't tell, quite frankly." As a result, babies born prematurely are automatically given morphine to counteract discomfort from the breathing tubes and other invasive procedures. "To make sure that a ventilated infant has pain medicine, they routinely infuse it with morphine," she says. "But that may actually be inducing more morbidity than preventing pain - that's what the animal data suggest," Dr Finkel warns.
The provisional patent applications for the pain measuring device have already been filed. Dr Finkel believes it will eventually be another module alongside the heart rate monitor and other instruments in the bank of patients' bedside monitors. "The development of this device is huge because it will change practice globally," she says. The doctors are also researching hot to reduce pain in patients suffering from sickle cell anemia. The chronic, lifelong disease is prevalent in Gulf countries, affecting about two per cent of people in the UAE and more than five per cent of Saudis. The pain is normally treated with morphine, which has undesirable side effects and doesn't really address the issue of pain from sickle cell anaemia specifically - it's just a blanket remedy.
Dr Quezado, working in the lab with mice, has developed a model to learn more about what causes the pain. If her findings can be translated to humans, it could help revolutionise treatment of the disease. "Pain is simply a symptom," explains Dr Finkel. "But it's a very complex symptom. There are many things going on behind it. If you address what's causing it, instead of just masking the symptom, you can be much more effective in your treatment."