|Parween Hussein holds her daughter Samal in the garden of their home [Credit: Victoria Fine]|
In the August heat, the waiting room of the Sulaimany Centre for Heart Disease was packed with worried parents. Some had been waiting for this day for months. Others just showed up. They had heard on TV that for 11 days an international team would be fixing children’s hearts for free. They dressed their sick children in suits and taffeta dresses and came, prepared to beg.
In Iraqi Kurdistan, an estimated 4,000 children are waiting for heart surgeries. Decades of malnutrition, intra-family marriage and, many believe, the remnants of Saddam Hussein’s chemical weapons deformed their hearts at birth. The deformities are exquisitely complex – a challenge for even the best pediatric surgeons. But Kurdistan has none.
Though Iraqi Kurdistan’s economy has blossomed since the fall of Saddam in 2003, healthcare has not seen the rapid changes and improvements of other sectors. Instead, parents are forced to rely on a loose network of NGOs to heal their children of their heart problems.
On the other side of the double doors into the cardiac ward, the team was assembling. The group of surgeons and medical staff were from the International Children’s Heart Foundation. They were ebullient because the first child they operated on was already walking around the Intensive Care Unit (ICU), less than 24 hours after surgery. It seemed to bode well for their trip.
At the head of the group was Dr. William M. Novick, the organisation’s founder. Novick is a giant. At well over 6 feet tall and known for his cigars and searing intellect, he could convince you of just about anything. The Memphis, Tennessee native has spent the last 20 years jumping from one underserved community to the next, building sustainable cardiac programmes where governments and communities have few options.
Coming from him, the future of Iraq’s young hearts seems particularly desperate. “This is a hideous problem,” he explained. “I’ve covered every possible place for heart surgery in this country. All six of them put together are not operating on 400 kids a year. This country has a population of 30 million. With a birth rate of 35 per thousand, they are generating in excess, by conservative estimates, 6,000 new children a year that need surgery.”
On this trip, his 16-person team planned to help up to 28 children, with the hope that continued training of local surgeons will eventually lead to the treatment of more.
They wrote each child’s name on a whiteboard in the corner of a conference-cum-examination room, trying to sort out which families had arrived and which cases are were urgent.
Most children on the list were patients of Dr. Aso Faeq, northern Iraq’s only pediatric cardiologist. Faeq visits two cities and 150 children each week, trying to keep up with his growing list of patients. He can only diagnose these children’s hearts – hearts with holes, or no hole where there should be one; hearts that grow upside down or twice as large as they should; hearts that need immediate care, or they will stop beating all together.
Then there is the backlog. “For the last decades, there was no treatment for congenital heart disease in this region,” Faeq explained. “The patients here are either previously undiagnosed cases or the families who couldn’t pay for the travel and treatment in Baghdad. So many patients are collected over years here.”
In all of Iraq, the waiting list for pediatric heart surgery is well above 20,000.
|Dr. Rao performs a pre-surgery examination on Samal [Credit: Victoria Fine]|
Next to Faeq, Jeremy Courtney, the executive director of the Preemptive Love Coalition, flipped through a stack of papers with dozens of children’s names. He was the only one in the group wearing a suit. Of anyone in the room, he had the most to gain from these surgeries. He and his wife moved to Kurdistan three years ago from the US with a few friends. They had a vague notion of trying to help people in the region.
Not long after, they stumbled across Kurdistan’s pediatric heart surgery problem and formed a small nonprofit organisation to send these children to neighbouring countries for surgery at reduced costs. His organisation contacted Novick almost two years ago for help. By arranging surgeries inside Iraq, Courtney could help fix more hearts in a matter of days than his organisation facilitated in its first year – and for one-fifth of the cost.
In the hospital, he was trying to stay on top of every detail and looked up from his list with surprise. “Where is Samal?”
Samal Sirwan Hussein was one of the first children scheduled for surgery. Five months after she was born, her parents took her to the doctor with a simple case of flu. They were told she had a congenital heart defect and would die without surgery within the next year.
The diagnosis kept her father, Sirwan Hussein, up at night. Other people in his family had heart problems. He knew this kind of diagnosis could be a death sentence for his daughter.
“My cousin had a heart problem, she wasn’t well. They didn’t find anyone to do surgery for her and after six or seven years she had a heart attack and died,” he said. “I don’t know what I do. All day, all time, all hours, I see her, she has a problem and I can’t do anything for her.”
Jeremy found Hussein and his wife Parween cradling their daughter in a corner of the waiting room. They had driven for five-and-a-half hours from the mountain town of Rwandz to the hospital, just three days after Samal’s first birthday. But there were so many mothers jostling to meet the American doctors that they could not get past the door.
As Hussein’s wife carried the baby into the examination room, she began to quietly cry. Her daughter reclined on the examination table, unfazed. Her huge brown eyes focused on an episode of Winnie the Pooh that Courtney held up on his laptop as a cardiologist performed her pre-surgery examination. With her stubby pigtails and near-constant smile, it was hard to imagine this child was sick. But when she waved her hands toward the screen, her fingertips were blue.
Decimated healthcare system
The visiting cardiologist was getting frustrated. The local doctors tapped to assist and learn from his team kept disappearing into their offices as patients came through.
Cardiology and other high-impact medical professions are not popular in Iraq, explained Dr. Rekawt H. Rashid Karim, the general director of health in Sulaymaniyah.
“Our people are not interested. They all go to the simple branches, like dermatology, like ultrasound; they go to branches that don’t have much responsibility,” Karim said. “These branches are more comfortable and have more money, because we have a bad system.”
Healthcare is officially free in Iraq. In reality, there are both public and private sectors and all the country’s doctors work in both branches. Doctors are paid the same flat salary in the public system no matter what their area of expertise.
Doctors who deal in complicated or urgent medical problems, like pediatric cardiac surgeons, are often required to stay longer or work harder at public hospitals. Meanwhile, doctors like dermatologists maintain dependably set hours and have more time to serve paying patients in private sector clinics.
Because of this, there are not enough trained doctors to fill the new hospitals being built to address Kurdistan’s heart problems and other urgent needs, Karim explained.
To make the situation even more pressing, Kurdistan’s hospitals do not only service northern Iraq. The rest of the country’s healthcare system has been decimated since the US invasion, leaving thousands to seek help in functional hospitals in the north.
Karim estimates that 40 per cent of the regional hospitals’ patients are from southern Iraq, but only 17 per cent of central and southern Iraq’s budget goes to the north, stretching their resources thin.
For the children who do not receive help from Novick’s team, their options are unclear, even to Karim. “There is no fixed programme. That is the problem,” he said.
Some children might be helped by other visiting teams, shipped out of the country for care through the Preemptive Love Coalition or taken to Sudan or India through emergency aid groups. The government will sometimes give families a few thousand dollars for their care. But Karim admits that there is no long-term plan to address the new cases of deadly heart defects that crop up each year.
|Doctors look for a vein to draw blood from Samal [Credit: Victoria Fine]|
For the NGOs who try to fill the gap in Iraqi Kurdistan, the political and cultural obstacles are intense.
“There are days when it comes to a head and there’s a family that doesn’t want to go to Turkey, to go to the ‘enemy Turks’. To have the ‘enemy Turks who are bombing northern Iraqi villages’ help their child,” Courtney explained.
“Occasionally there are funding disputes or there’s a kid from this part of the country who is a constituent of that political party and if we’re appealing for money from another political party, then we run into problems.”
“If we get to, on any level, help overcome some of the petty politics inside northern Iraq to help save a child’s life, that’s meaningful for us,” Courtney said.
For Novick, politics are more of a sticking point than an opportunity. “I’m not interested in becoming a political ping pong ball,” he said.
But the nature of his work demands that Novick work on a high governmental level to ensure sustainable care once he leaves. He knows that in order for a long-term programme to work in Iraq, he must have both of Kurdistan’s political parties behind him, as well as some level of agreement between northern and southern Iraq.
“One of my obstacles, if not the major obstacle, is figuring out the political landscape,” he explained. “I don’t want to step on toes and defeat the purpose of the programme before it ever starts.”
As his daughter was prepped for her operation, Sirwan Hussein fidgeted in an empty bed in the cardiac ward. Samal’s blood type, A negative, was hard to find, so he donated about a litre of blood in case his daughter needed it. He passed out after all of Samal’s tests were finished and she was snugly awaiting her operation.
It took more than five hours before they received word from the doctors that Samal had made it through the surgery but the outlook was not good. Her heart had stopped even before the operation was underway and she was extremely weak. Less than 24 hours later, Samal died in the ICU.
For the Hussein family, Samal’s death was bittersweet. An estimated 7 million children worldwide need heart surgery but have not received it. Samal had beat immense odds, but it had not been enough to save her.
In the basement of the Sulaimany Centre for Heart Disease, four more children’s names were written on the surgery board for the following day. In the waiting room outside, families continued to gather, hoping to be one of the thousands put on the surgical team’s waiting list.