The woman who lost nine babies
In Nigeria, and other developing countries, there are many more like her, who have suffered from Rh disease. Yet the illness, which decades ago was defeated in the West, has a simple cure. A Toronto doctor is helping to lead an international effort to save hundreds of thousands of infants. But will the world care enough to make it happen? Jennifer Yang reports from Lagos
LAGOS, NIGERIA— In this sprawling city, a strip of concrete homes sits along the edge of one of Lagos’s largest slums. It is just one of many such streets in the West African megacity, and tricky for outsiders to find; but for a few Nigerian naira, a local motorbike taxi will deliver you to Amodu St.
Follow the smoke of the grilled-corn vendor and there is a squat compound with a corrugated metal roof, the home of a 30-something woman with a warm smile and animated gesticulations. Her name is Florence Onwuasoanya. But on Amodu, they sometimes call her “the woman who loses all the babies.”
Onwuasoanya lost her first baby by choice, aborting an unplanned pregnancy. But her second pregnancy was a blessing because this time she was married.
When she lost that baby, she was devastated. When she lost two more, including an early stillbirth, she became desperate.
So when her next pregnancy stretched into its final trimester, Onwuasoanya allowed herself the simple pleasure of going to the market to buy baby clothes. That day, her water broke and her daughter died shortly after being delivered by caesarean section.
Onwuasoanya named her Chidera, or “what God has written.” People began thinking she was cursed. Her husband no longer celebrated her pregnancies, telling her “That baby’s not going to stay.” He asked to take a second wife, eventually fathering a child with another woman.
Onwuasoanya was determined to have her “live baby” and because her doctors had no answers, she turned to other remedies. She prayed, fasted and visited churches; she swallowed herbal concoctions, including a mixture that teemed with live maggots.
When someone said she had an ogbanje — a spirit child that repeatedly dies and returns — Onwuasoanya travelled three hours to perform rituals at the Niger River, where she narrowly escaped a crocodile attack.
“I wanted people to believe that I had no hand in what was happening to me,” she said.
After nine attempts to conceive, Onwuasoanya was still a mother without a child. Only in 2009 did someone finally explain: her mysterious affliction might not be a mystery after all.
In fact, a solution had been known for nearly half a century. It had simply failed to reach her.
The story of Florence Onwuasoanya is the story of a job unfinished.
She will never have scientific proof for why she lost each baby; their deaths were not investigated. But today, she knows she and her husband have a biological mismatch that can gravely endanger pregnancies. She knows her story fits the profile of a disease that kills fetuses and newborns.
And every year, millions of women like her are spared what she endured — but they live in wealthy nations where Rh disease is considered a problem of the past.
One of the symptoms of Rh disease — also known as Rhesus disease, or hemolytic disease of the newborn — is believed to have been first described as early as 400 BC. It wasn’t until two millennia later that doctors identified a surprising link between many sick and dead babies: their parents had clashing blood.
The potential consequences of this mismatch were vividly described in a1973 book: a baby who died convulsing as his skull filled with blood; gasping newborns with swollen bodies; survivors rendered “physically helpless, unable to support their heads or sit.”
“Those whom it kills all die before birth, or shortly thereafter,” wrote medical journalist David Zimmerman. “Some of the survivors recover; others are left crippled for life in mind and body.”
Rh disease once killed or disabled as many as 100,000 babies every year in the U.S. alone, often occurring again and again in the same family. But within “the career span of a single scientific generation,” as Zimmerman wrote, researchers developed a weapon to defeat it: a single injection that prevents the disease.
Today, Rh disease is extremely rare in countries such as Canada, where screening and prevention have become routine. Many women who get the injection are oblivious to its purpose or the heartache they’ve been spared.
As far as the western medical establishment is concerned, Rh disease is gone.
“Rarely is a disease dealt with so effectively in so little time,” Zimmerman wrote in Rh: The Intimate History of a Disease and its Conquest.
But four decades after the cure was found, while Onwuasoanya was mourning Chidera, a doctor in Toronto had a startling realization.
Dr. Alvin Zipursky is a former pediatric hematologist with the Hospital for Sick Children, an 87-year-old prone to friendly hugs and ending his anecdotes with “Isn’t that something?” Though technically retired for more than 20 years, he remains scientifically active and is still a fixture at his cramped office at Sick Kids.
Zip, as he’s known to friends, is one of Canada’s Rh disease pioneers. He contributed to the Canadian eradication effort and in his desk, Zipursky still keeps a glass vial that once held the country’s first experimental dose of the prophylactic injection.
The Winnipeg-born physician relocated to Ontario in the late 1960s and as he moved on to new jobs and medical puzzles, he came to believe that Rh disease had been eradicated worldwide.
Then one day in 2008, he had a sudden thought that woke him from what he calls a 40-year sleep. Is Rh disease really gone? “It can’t be right,” he realized. After Zipursky retired, he turned his attentions to addressing problems in lower-income countries, founding a program for global pediatric research at Sick Kids.
But until that day, it had not occurred to him to consider whether Rh disease might still affect the developing world.
It didn’t seem to have occurred to the global health establishment either. The World Health Organization does not have global statistics for Rh disease. There is also a pervasive assumption that Rh disease isn’t a major concern in lower-income countries, where the Rh-negative blood type is less common.
But researchers from those countries were still reporting cases in the scientific literature. So in 2013, Zipursky teamed with 17 researchers to produce the first global estimates for Rh disease and severe jaundice, a common symptom. The numbers, published in Pediatric Re
search, disturbed Zipursky: an estimated 373,300 Rh disease cases in 2010, mostly in sub-Saharan Africa and South Asia. An estimated 141,000 babies died or were stillborn and another 27,000 were at risk of permanent disability.
The study has major limitations. Because so many lower-income countries lack data, researchers used assumptions and estimates based on other estimates. But “the very fact that we are forced to rely on data from Europe and the United States, now 70 years old, shows the low priority given to this condition,” the paper noted.
It was a start, and enough to convince co-author Joy Lawn, a leading researcher of global newborn health, that Rh disease “is a major problem.”
“The (estimates) of deaths from Rhesus disease — particularly if you were to include stillbirths as well as the neonatal deaths — that’s as many as the child deaths from HIV,” says Lawn, a professor with the London School of Hygiene and Tropical Medicine. “But I think the political difference is that HIV has big political momentum and Rhesus hasn’t.”
The task of eradicating Rh disease was far from over and nobody seemed to care. So Zipursky, then just shy of 80, decided to “get cracking.”
The medical puzzle that launched his career will likely become his final act. This time, the world already has the cure — but the fix, in many ways, will prove much harder.
The prologue to Rh disease is always the same: a woman with an uncommon blood type meets a man who is her hematologic opposite. They have a baby, who inherits the father’s Rh-positive blood.
Rh is the most important blood group next to the ABO types and nearly every human can be categorized as “Rh positive” or “Rh negative.” The latter is rarer, but prevalence varies. In China, fewer than 1 per cent of people are Rh negative; in Caucasian populations, about 15 per cent.
When Rh disease occurs, it’s always when an Rh-negative woman has an Rhpositive baby.
Mother and child, therefore, are calamitously mismatched. So when the fetus’s blood — tion, this miscarriage seeps can occur into the or during throughout mother’s delivery, circulation pregnan- aborcy — the mother’s immune system detects its red blood cells as invaders, deploying antibodies to destroy them.
The problem? These antibodies can cross the placenta and attack the fetus.
The odd thing is the first baby is usually fine, delivered before the mother produces enough antibodies to cause harm.
But her second Rh-incompatible pregnancy, and each one after, is at risk. This is because once her immune system has been “sensitized” to the Rh-negative blood cells, it will be ready to attack the next time. In the 1940s, half of all sensitized pregnancies ended in death in Manitoba, Canada’s centre of Rh disease research.
The discovery of the Rh blood group in the late 1930s led to a scientific frenzy.
To save fetuses, doctors would pierce the womb with a large needle and infuse the baby with healthy blood. Others induced early delivery, removing sick babies from hostile environments.
When Rh disease caused severe jaundice — the buildup of a yellow-compound called bilirubin, caused by the breakdown of red blood cells — a baby’s blood would be removed and replaced through “exchange transfusions.”
But the Holy Grail was a prophylaxis to stop the disease before it starts. In the early ’60s, scientists tested an audacious idea: injecting women with the antibody that from small enough tem They from was human enough harvested to hurting reacting. stop donors the to their mother’s Trials be “anti-D” babies. and safe, were immune used but antibodies conducted potent a dose sys— an In and anti-D 1968, they injection New worked. Jersey called scientists Rhogam, debuted quickly dian-developed followed by competitors WinRho. In such Manitoba, as Canawhere Rh disease once killed 100 babies a year, deaths fell to just one every few years by the ’90s.
The war in the West had been won. But in many parts of the world, it had not even started.
In Lagos, home to about 21 million, nobody has to tell pediatricians such as Chinyere Ezeaka that Rh disease is still a problem.
On this summer morning, the power in the emergency room has gone out, so nurses fill out forms with the glow of their cellphones. The blue lights of phototherapy machines, where yellow-tinged babies are sleeping, have gone dark.
Ezeaka is on the phone, talking to a colleague about a baby with jaundice, which can cause brain damage if untreated.
“The mother was Rhesus negative,” she explains after hanging up. “But the bill accumulated and they don’t have money to pay. So they’re afraid the mother will run away with the baby.”
Rh disease is a recurring story here at the Lagos University Teaching Hospital, where she runs one of Nigeria’s largest neonatal wards.
The underlying problem is poverty. Most women who need the injection can’t afford it. Others “abscond” when they run out of money before their babies can be treated. “Many of the women don’t even know their blood group,” Ezeaka sighs. “They keep (losing babies) not knowing it’s the sensitization they had earlier.” But Rh disease has received very little attention from policymakers, both in Nigeria and globally. The WHO has no programs cause “there specific is no to good-quality Rh disease, in data,” part says beDr. Metin Gulmezoglu with the UN agency’s department of reproductive health. “In our research and in our contact with member states, it has not come up as a major dinator concern,” of the maternal says Gulmezoglu, and perinatal co-orh-ealth team. He agrees the problem could be underdiagnosed but this is “not a research question for WHO to address, but for the maternal and neonatal health communi-ty He is not yet convinced by the estimates provided by Zipursky and his co-authors, noting concerns with their data and methodology. “Sometimes when people are very close to a cause and are obviously passionate,” he cautions, “the numbers can be slightly exaggerated.” But in Nigeria, where Zipursky and his co-authors estimate 33,075 cases of Rh disease per year, front-line doctors say the numbers sound plausible, if not conservative.
Pediatrician Dr. Zubaida Farouk sees cases of Rh disease every month at her hospital in the northern city of Kano. But she suspects they are only the “tip of the iceberg.”
In Nigeria, seven million babies a year are born, but only 36 per cent of them in a health facility. More than half of rural Nigerian women do not see a health worker before giving birth, according to UNICEF.
While Rh-negative prevalence is low in Nigeria (believed to be 5 to 8 per cent), this means affected women are more likely to have partners with the opposite blood type.
Considering Nigeria’s soaring fertility rate — up to eight children per woman in some parts of Kano — Rh disease is likely a bigger problem than many realize, Farouk says.
Policymakers “are not looking for this,” she believes. “And if you’re not looking for something, you won’t see it.”
Rh disease is particularly difficult to see in a developing country like Nigeria, where the government is battling everything from Boko Haram terrorism to extreme poverty, corruption and a major HIV epidemic.
About 660 newborns die each day in Nigeria. How does Rh disease fit in? Difficult to say, as so many deaths are not even recorded.
“We talk about the invisible Nigerian child,” says pediatrician Peace Toritseju, who works in the capital, Abuja. “He has never been to a hospital, never been to school; no one has ever even written his name.”
Globally, newborns also have an invisi- bility problem. “The adult man’s death is very visible,” says researcher Joy Lawn, who has published agenda-setting studies on newborn mortality. “But if you have a baby’s death . . . there won’t be a funeral. It’s not socially visible.”
Since the ’60s, the number of children who die by age 5 worldwide has been cut in half thanks to targeted campaigns. But global progress for neonates, or babies in their first month, has been harder and slower. Newborns now make up 46 per cent of all under-5 deaths, a proportion that has grown in recent decades. Stillbirths are even more invisible, Lawn adds, further obscured by stigma and sometimes even hidden by the family.
In Nigeria, many women deliver babies with minimally trained birth attendants, not necessarily educated on Rh disease.
Even doctors’ knowledge may be lacking. Dr. Vinod Bhutani, a professor of pediatrics at Stanford University, has travelled to Nigeria many times in the past decade and recalls hospital officials who said Africans didn’t have the Rh blood factor. Others believed the disease was no longer an issue.
One explanation is that Rh disease is being misdiagnosed. It often leads to jaundice, which can have many other causes, including prematurity and G6PD deficiency, an inherited condition.
Jaundice itself is a grossly neglected problem, even though Nigerian pediatricians ranked it as a top issue in a 2012 survey. As many as 30 exchange transfusions are performed weekly on severely jaundiced babies at the Lagos University Teaching Hospital; in California, Stanford’s Bhutani says he hasn’t performed the emergency procedure in a decade.
Rh disease is certainly not the leading cause of neonatal jaundice in Nigeria but it has a clear, ready-made cure.
Farouk, the doctor from Kano, believes the major barrier is cost. The injection costs about $80 (U.S.), well beyond most Nigerians, who live on less than a dollar a day. And in the north, many fathers sacrifice a ram on a baby’s seventh day, Farouk says. The animal costs about the same as the injection and most men “would rather buy the ram.”
“A lot of women, you prescribe . . . and they won’t get it,” she says. “It’s very painful because some mothers come over and over again with severe jaundice, and they never receive the injection.”
Farouk sees babies every week with brain damage caused by jaundice and if they survive, she knows their futures are grim. Many will have normal intelligence, but will be “locked in a palsied body,” unable to walk or speak. They will require specialists; their families often can’t even afford hearing aids. Disabled children are sometimes abandoned or left to beg.
For others, it is a matter of time before death catches up. This year, Farouk lost a 12-year-old patient, who died of malnutrition. She blames the severe jaundice he suffered as a baby, which left him braindamaged and unable to easily swallow.
Farouk has advocated for these patients for a decade, but capturing the attention of policymakers has been difficult. Which is why she was surprised to meet two North American doctors who showed not only an interest in Rh disease, but had formed an organization to defeat it.
One was Bhutani, the doctor from Stanford. The other was Zipursky. In 2013, Hans- Ole Hedegaard was strolling through Denmark’s Kronborg castle, the setting of Hamlet, talking to a man from California about blood.
The Dane was hosting a former blood bank director who had contacted him to learn more about his company, Eldon Biologicals.
As they toured Denmark’s scenic northern coast, Hedegaard explained the Eldon card — a plastic rectangle, roughly the size of a credit card, that can diagnose blood types using a drop from a finger prick. No need for labs, liquid solutions or specially trained workers.
His Californian guest was intrigued. He also said he knew someone who had been looking for this very thing.
“He was a friend of Dr. Alvin Zipursky in Toronto,” Hedegaard says. “And he knew that Alvin took a lot of interest in finding a way to easily identify women who were Rhesus-negative.”
Since his 2008 wake-up call, Zipursky has become an evangelist for Rh disease eradication, contacting scientists and companies around the world to recruit them to the cause.
At Stanford, he found an eager ally in Bhutani, an expert in newborn jaundice with silvery hair and a regal bearing. They formed the Consortium for Universal Rh disease Elimination, or CURhE, with an Italian pediatrician, Dr. Giuseppe Buonocore, soon brought on board.
Their mission is to advocate and educate, while supporting lower-income countries interested in tackling the disease. While CURhE’s first few years have been somewhat amorphous, its goal is clearly defined: eliminating Rh disease.
“This is not rocket science. We just need to do it,” Bhutani says. “But at the same time, it’s a mammoth task because it’s bringing infrastructure to the community.”
Rh disease can only be stopped if women are first able to identify their blood type, even in countries where laboratory services are scarce or expensive. Zipursky wanted a “point of care” diagnostic — something that functions like a pregnancy test, but for Rh-negative blood.
The Eldon card caught his attention. The card is already being used at Planned Parenthood, according to an Eldon spokesperson, as well as by army medics and Antarctic expeditions.
Zipursky contacted Hedegaard and his son Kasper, head of sales and marketing. Soon they were meeting him and Bhutani in Vancouver.
“They’re damn convincing,” Kasper Hedegaard says. “It came as an ‘aha’ experience. Is this really a problem? Because it’s so simple . . . to do something about it.”
The second challenge is making the injection affordable for every woman. Zipursky contacted all the major manufacturers but only one showed interest.
Kedrion is the pharmaceutical company that now owns Rhogam, the world’s first “anti-D immune globulin,” which it acquired in 2012. It is also headquartered in Tuscany, not far from the University of Siena, where Buonocore works.
Zipursky got on a plane. “The story starts with Alvin,” says Gioacchino de Giorgi, one of the company’s marketing directors. “He came to visit our facilities in Italy, and this is where Kedrion joined CURhE.”
The company gave an initial $100,000 (U.S.) grant and made several commitments, including to provide Rhogam for pilot studies. With Kedrion on board, Zipursky now had the tools to screen for and prevent Rh disease affordably.
The next step is to test whether this model could work. He and Bhutani began contacting scientists around the world, looking for local advocates to lead the fight. “It has been our goal to have programs in developing countries planned and implemented by those in the countries,” Zipursky says.
Anumber of initiatives are underway. In rural Pakistan, Zipursky plans on launching a pilot, led by researchers with Sick Kids’ Centre for Global Child Health and the Aga Khan University. They are testing a system for screening women and treating Rh disease using the Eldon card and a smartphone app that will further simplify the process.
CURhE is also supporting research in countries like Mexico and India, where the story of Rh disease is always different. A Chinese scientist, for example, told CURhE he anticipates a rise in Rh disease in his country, estimating as many as 16,600 cases a year.
Fewer than 1per cent of people in China are Rh-negative. But this means an affected woman’s partner is almost guaranteed to belong to the other 99 per cent. And last year, China relaxed its one-child policy, so many couples will have second babies.
Zipursky is still struggling to get the attention of global health leadership, however, often finding cynicism or apathy. He recalls a U.S. government scientist, who asked how many babies died from Rh disease every year.
‘Some mothers come over and over again with severe jaundice and they never receive the injection’ “It’s not rocket science . . . but at the same time, it’s a mammoth task because it’s bringing infrastructure to the community.” DR. VINOD BHUTANI STANFORD UNIVERSITY “If you have a baby’s death . . . there won’t be a funeral. It’s not socially visible.” JOY LAWN RESEARCHER
“I said probably over 100,000, and she said, ‘Well, that’s not many.’ I couldn’t believe what I heard. That’s not many.”
He understands global health bodies are grappling with illnesses that kill by the million. He also knows he can be an unrelenting optimist — “That’s me, Pollyanna!” he will sometimes say.
But prevention is cheaper than treatment, he says. And Zipursky can’t help returning to the central facts: Rh disease has a solution. We know how to stop it. Why wouldn’t we try?
“It’s stupid for a woman in Canada to have no problems, while a woman in a developing country goes through hell,” he says matter-of-factly. “One baby is too many.”
There is another secret to ending Rh disease: educate the women.
Olufunmilayo Banire, a 50-year-old Lagos businesswoman, knows that a woman who understands Rh disease will stop at nothing to save her baby.
When she was10, a doctor told her she had a “peculiar blood” so she would have to marry an Rh-negative man. The warning stuck and later Banire demanded to know the blood type of every prospective love interest before agreeing to a date.
Eventually, she learned there was an injection available that would help her have healthy children with any man. (She wound up marrying an Rh-positive man.) She was still worried, however, and delivered her first baby in New York, even bringing doses of the anti-D injection from Nigeria.
But most Nigerian women can’t afford the injection, let alone treatment abroad. This point was first driven home for Banire when her nanny confided she had been “chased off” by her husband and accused of witchcraft after losing several babies. Banire urged her to test her blood; it was Rh-negative.
Then, while visiting a relative in hospital, Banire was approached by a desperate man, who said his wife had “unfortunate blood” and needed an injection. After helping the couple, Banire donated injections to the hospital to give to needy patients but realized the staff had other intentions. “They wanted to sell them off,” she says.
Banire decided to start a non-profit, Rhesus Solution Initiative (RSI), which would give the injection to women directly. With one employee and a shoestring annual budget of four million
naira ($14,000 Canadian), RSI has become perhaps the closest thing Nigeria has to a public health system for Rh disease, providing more than 5,000 blood tests and donating nearly 1,500 doses to impoverished women since 2007.
Many women who come to RSI are already desperate after losing several babies and will travel for hours to reach the charity’s two-room office at the “Unique Shopping Mall” in the city of Ikeja. Banire regularly finds herself not just counselling women, but explaining to husbands that their wives are not cursed or abnormal.
“Some women have lost their homes, their marriages because of this,” Banire says.
Modupe Odumade, an English teacher with a stern manner and husky voice, breaks down when she recalls how her husband abandoned her more than 15 years ago after she lost several babies. “He had to leave,” she recalls through tears, her mascara tracing a watery black line down her cheek. “There was no child to show for it.”
Her father, however, demonstrated the lengths some men will go once they learn about Rh disease. After seven years of going from doctor to doctor, she finally met one who explained the issue with her blood type. Her father wept at the revelation, demanding that her siblings get tested, too.
When Odumade remarried and became pregnant, her father was determined to see this baby survive. He procured blood, in case she needed a transfusion. He bought fuel for the hospital’s generators, in case the power went out.
After her jaundiced baby was born and sent for treatment in a neighbouring state, Odumade’s father made the six-hour round trip every day, delivering pumped breast milk from mother to child.
The baby survived, and Odumade named him Daniel. Her father called him “mercy boy.”
“He felt responsible,” she says. “He thought that as a father . . . he should have discovered my blood Rhesus factor.”
Like many women who learn about Rh disease, Odumade has become an ardent advocate, convincing her principal to hold educational sessions for their schoolkids. Banire believes awareness is key and devotes resources to organizing marches, hosting school assemblies and printing flyers with messages in English and Nigerian pidgin: “You sabi your Blood group? You wan be beta mama?”
She has largely given up on the media in Nigeria, however, where journalists often charge for coverage. “It’s really discouraging,” she says. “Everything here is money, money, money.”
But RSI has methodically built a small army of ambassadors, not just women affected by the disease but people like 54-year-old Rhoda Olumuyiwa in Lagos.
Olumuyiwa says she started delivering babies in 1984 after an old man came to her in a dream and showed her how. She is now among the hundreds of community and traditional birth attendants who have been trained by RSI.
Today, during the rainy season, women with swollen bellies will flip-flop along mud-slick paths and cross garbage-strewn canals to reach the Christ Apostolic Church, where Olumuyiwa delivers babies in a spare concrete room.
When a woman is at risk of Rh disease, Olumuyiwa will notify RSI as soon as the baby is born. Within hours, a white minivan emblazoned with the words “Live Baby for Every Mother” will pull up and RSI employee Razaq Olorunnimbe will climb out, an injection in his hand.
“Any Rhesus negative women I have,” Olumuyiwa says, “I call him.”
When Banire launched her non-profit, she had a dream that now seems naive. “We actually thought from inception that the government would appreciate what we were doing and they would take it to the next level.”
For10 years, she waited for the needle to move. But this summer, she travelled to a meeting in Abuja and finally heard the words she has been waiting for.
“The federal government, through the federal ministry of health, is determined to ensure the elimination of Rhesus disease in Nigeria,” the government’s director of family health announced, as refrigerator-sized air conditioners hummed in the corners.
This statement represents a sea of change in the government’s attitude to- ward Rh disease, say pediatricians who attended the meeting. It was also the culmination of two years of effort by CURhE and its Nigerian “task force,” a network of local doctors across the country.
The Abuja meeting ended with a plan: to conduct a nationwide pilot study to finally yield some hard data and test Zipursky’s model for screening women with the Eldon card and preventing Rh disease. If successful, they want to scale up the program and screen 70 per cent of women within five years.
This goal is ambitious, perhaps overly so. The group is also hitting roadblocks; the task force hoped to have some preliminary data by now but some doctors are still waiting for ethics approvals to get started.
Money, as always, is a problem. Although the government expressed clear support, it made clear that the pilot must be funded by CURhE.
“They must come with the money,” says Dr. Bose Adeniran, federal director of child health. “When we see the evidence, then the domestic resources will be factored in.”
Outside Nigeria, other challenges lie ahead. Zipursky’s study in Pakistan with Sick Kids was intended to launch this past spring, but has been delayed by technical issues. In Ghana, efforts to launch a pilot stalled after the lead researcher died.
Zipursky and Bhutani also acknowledge the potential for conflicts of interest when it comes to alliances between industry and academia, increasingly common in global health endeavours.
Asuccessful eradication effort will obviously open new markets for companies like Kedrion and CURhE. But Bhutani says the consortium has clear principles, and any partner unwilling to adhere to them is “no longer welcome at this table.”
Representatives from CURhE’s corporate partners say their primary concern is eradicating a neglected disease. “This bothers me personally,” says Eldon’s Kasper Hedegaard. “I would like to see change ASAP.”
Kedrion echoes the sentiment and says it is prepared to provide Rhogam at cost to lower-income countries, once they are ready to implement nationwide programs. The company aims to keep costs low by selling directly to governments, cutting out any middlemen lining their pockets.
But in Nigeria, this could be a “recipe for disaster,” says professor Jillian Kohler, director of the WHO collaborating centre for governance, transparency and accountability in the pharmaceutical sector at the University of Toronto.
“The problem of corruption is endemic to Nigeria, particularly in the health sector, particularly when it comes to (drug) procurement,” she says. “That’s not to say that the government is not to be trusted always, but you have to be smart.”
There is another lingering worry. Zipursky will turn 88 next year and eventually, he will no longer be able to continue this work. But his co-founders will continue driving the effort and the first seeds have now been scattered, Bhutani says. At least one has taken root in Nigeria, where a newfound hope for eradicating Rh disease has begun to bloom.
“Like all good teachers, (Zipursky) is a farmer,” Bhutani says. “He finds fertile soils and germinates the seeds. Some take, even when others don’t.”
On Amodu St., Florence Onwusoanya’s living room is cheerfully painted in the pink and green shades of a cartoon watermelon. The main wall is decorated with wedding photos but in the middle, the most prominent spot, is a gold-framed portrait of a diapered baby, smiling and draped in orange beads.
In 2009, someone finally told Onwuasoanya about the injection for preventing Rh disease. She decided to get one after losing her ninth baby, though scientists say it doesn’t help women who are already sensitized.
She did not fully understand Rh disease until the next year, however, when a woman from church introduced her to RSI. She was pregnant again but this time, she knew what to expect.
Her baby came early and did not cry. He also developed severe jaundice. But after 11 days in hospital, Onwuasoanya returned home with Franklin bundled in her arms.
Her neighbours were astonished, some even accusing her of buying the baby. But they clambered to catch a glimpse of the miracle child. “The first (thought) that came was, ‘Me,
Florence, holding a live baby,’ ” she says. Onwuasoanya has now become an Rh disease evangelist, telling anyone who will listen to get tested and take the injection if they are at risk.
She and her husband still have struggles, mostly financial; she spent so much money on her long search for answers. But her child is here now and he has made her whole.
“If Franklin hadn’t come, I don’t think I will still be alive. I would have been long buried, because the pain then was too much,” she says. “I’m happy now because we are happy together.”
This story was made possible through the Aga Khan Foundation of Canada’s Fellowship for International Development Reporting.
“If Franklin hadn’t come, I don’t think I would still be alive. I would be long buried, because the pain then was too much.” FLORENCE ONWUSOANYA MOTHER WHO IS RH-NEGATIVE