On the top of Mount Wen in Beichuan County in China’s Sichuan Province stands a 30-foot-tall golden statue of Da Wu, or “Yu the Great.” Up close, the faux gold statue appears to have been built by the same people who manufactured the Paul Bunyan statue in Bemidji. Yu is an impressive, slightly kitschy roadside attraction in this unglamorous rural province. The man who inspired the golden Chinese emperor was born 5,000 years ago on this hill. His signature project was excavating a series of drainage canals to alleviate the devastatingly unstable floodplains of China’s heartland. When the 13-year dig was complete, Emperor Shun passed over his own son to bequeath the throne to Yu, who united five kingdoms to become the emperor of the Xia dynasty, China’s first.
I’m standing at the top of this evergreen-lined mountain with Annamarie Saarinen, the co-founder and CEO of the Newborn Foundation, a St. Paul–based charity. The Newborn Foundation is here in Sichuan to partner with 50 provincial hospitals to set up a protocol to screen newborn babies for critical congenital heart defects. We toured a hospital in Beichuan this morning, and when we showed the slightest interest in Big Wu’s Wikipedia page, the Chinese doctors and nurses insisted on bringing us up here to see him. Annamarie is somehow hike-ready—she’s wearing blue jeans and sneakers, not a huge departure from her usual preppy J.Crew catalog repertoire of khakis and wedges. But no matter how much she dresses down, she cannot hide the fact that she is a nearly six-foot-tall blonde woman in rural China. Passersby stare at her as if she’s a 30-foot statue.
The rest of Annamarie’s delegation consists of a geneticist, a pediatric cardiologist, a public health policy expert, and a pediatric endocrinologist. In the van on the way to Mount Wen, I sit next to Dr. David R. Brown, the pediatric endocrinologist. He’s known Annamarie for years, since she was doing PR work on a hospital project they were involved with a decade ago. Annamarie is an advocate for infant screening using a pulse oximeter, a version of the device they clip onto your finger when you’re admitted to the hospital for anything more exciting than a sprain. The device uses infrared light to measure how much oxygen is in your blood, and the resulting number can flag a defect. To screen a baby, they take readings on either the hand or the foot, and if the readout on the oximeter is anything below 95, the baby is flagged.
Studies have shown that clinicians miss about one-third of heart defects without the use of oximetry because infants often show no symptoms at first. And because nine in every 1,000 births are afflicted with a congenital heart defect, early detection can be the difference between life and death. Brown serves on the Newborn Foundation’s board and says Annamarie’s advocacy work has the potential to be as exciting as any game-changing medical discovery, with numbers in league with the discovery of insulin or penicillin. “Annamarie found a hole in the health care system,” he says. “And this can have a huge impact, much more than one doctor.” Brown believes great change often isn’t the result of multi-million-dollar collaborative efforts—it often comes down to one person and one idea. “It’s not about high-tech genetics,” he says. “It’s about early detection. And if this can be implemented in China, it can save thousands of babies a year.”
The Newborn Foundation has already made tremendous progress toward its stated goal of screening every baby in the world. Thanks in part to the nonprofit, which was founded in 2010, pulse ox screening is now mandatory in 47 of the 50 states and the District of Columbia, and is one of the core 34 standardized newborn screening tests in America. Annamarie says that in the four years they’ve been screening at this rate, they have flagged critical heart problems in thousands of babies. The foundation was recently awarded a grant from the Gates Foundation. Annamarie’s organization literally has the potential to save millions of babies.
In a former life, Annamarie worked as a lobbyist at St. Paul–based communications firm Ainsley Shea, where she represented medical technology companies. But her expertise in pediatric cardiology and health care policy is deepened by necessity: Her daughter Eve was born with a rare congenital heart defect and successfully underwent a risky surgery when she was only 3-and-a-half months old. Annamarie’s ability to speak clearly and succinctly about complicated medical issues as both a mother and a lobbyist—and her trial by fire with her own daughter—has compelled her to help other babies, other families.
It’s early September of 2015, and I’ve been embedded in the Newborn Foundation’s delegation for almost a week. We started at a convention in Beijing, where Annamarie gave a speech to a group of medical professionals advocating the effectiveness of pulse ox screening, urging the Chinese government to adopt the process as the United States did in 2011. And now we’re way out west checking up on the progress of the trial pilot in Sichuan.
The Newborn Foundation has donated 75 portable pulse oximeters to the Sichuan-area hospitals they’re partnering with for this study. Masimo, a California tech company and the leading pulse oximeter manufacturer in the world, specifically designed a new portable pulse ox for use in rural areas like Beichuan. The devices are relatively cheap and can be plugged into any smartphone. On prior trips, Annamarie has brought doctors and nurses from the United States to help train their Chinese counterparts to use the new equipment.
China is sometimes perceived as being too proud to accept help from the West, and the West can be wary about sharing valuable intellectual property in China. China’s inward perspective shouldn’t come as a huge surprise—this is a country, after all, famous for a huge wall. Tradition is important, and in rural China, far away from the emerging billionaire classes in the big cities of Beijing and Shanghai, everything seems old school. The nurses still wear those little white hats that you see in movies set in the ’50s.
Members of the Newborn Foundation
Annamarie and other members of the Newborn Foundation in China.
With this comes an old-fashioned severity to the standard medical professional protocol: There is a 50 percent C-section rate, and new mothers aren’t allowed in the neonatal intensive care units (NICUs), meaning mothers with babies in those units don’t get to hold them. But spending time with Annamarie in rural Chinese hospitals is a testament to the power of mothers and the universal instinct to cure sick babies. When she shows up in the ward with her entourage of American scientists and doctors, there are smiles and posed pictures and rapid-fire conversation. That Annamarie is a mother is repeatedly acknowledged, and she receives the customary deference and respect. At the Beichuan hospital, the Chinese doctors and nurses wheel a baby out for a photo op with the Minnesota mom.
As the hospital tour continues, we board an elevator. In a quiet moment, I ask Annamarie what motivated her to move beyond her own daughter and think about newborn screening as a policy change on a national and global scale. What sparks a crusade? Anger? Hope? She thinks for a moment and looks me in the eyes. “It was guilt,” she says, referring to the self-blame she felt when a newborn Eve was first taken away from her and put in a NICU. Annamarie wasn’t expecting any problems at the time—she had had four ultrasounds to that point and none of them turned up a thing. “I asked myself, ‘What did I do wrong?’”
Eve was born at Fairview Southdale Hospital in Edina on the second week of December in 2008. After two-and-a-half days at the hospital, the baby was set to be released. “We were perfectly fine,” says Annamarie. “But the pediatrician heard a little murmur. They were going to check it at the one-week checkup, but she says, ‘There is an echocardiogram machine and a tech in the hospital, so let’s take Eve and take a look because I do not want you to worry about it when you go home.’” Annamarie agreed to the echo, but she says she wasn’t worried. “Third kid, you know?” she adds. “If they’re not bleeding, it’s like, looks great.”
Talking to Annamarie at a coffee shop in the North Loop this past winter, she says she’s seen enough echocardiogram results at this point that she can actually read one herself now. She’s a fast learner, and this stuff was always in her wheelhouse thanks to her medical PR background (she also, for a time, chaired the steering committee of the American Heart Association).
After graduating from Iowa State, Annamarie had started her career as a news reporter for an NBC affiliate in Des Moines, and years later at Ainsley Shea, she used her journalism skills on behalf of her corporate clients. “As a kid I either wanted to be a journalist or a diplomat,” she says. Annamarie grew up in a small town in southwestern Minnesota, with her adoptive parents. “Even as a little kid, I was interested in public policy. When I was 7 or 8, I told my mom that I wanted to be an ambassador.”
When I met Annamarie 13 years ago, she was a divorcée in her late 30s, but she looked 25 and fit right into the North Loop hipster scene. She was dating Paul Saarinen, kind of a tech-y marketing and design guy who everybody called Tall Paul. I was friends with Paul and his business partner/roommate Johnny Fillman. They had their own marketing firm in a huge loft above the One on One bicycle shop. (And they still work together, now in the medical device industry—they’re both designers for UnitedHealth Group’s innovation hub: Optum.) Back then, Tall Paul and Johnny would throw parties all the time and when Tall Paul started dating Annamarie, she seemed very sweet and shy, and I had no idea that she had already lived this other, very serious adult life. She had a son, and a real day job, and on top of that was recovering from cancer.
“My first marriage was on the decline and then I got pregnant with twins and I miscarried,” she says. “And it turned out to be a molar pregnancy, which create these tumors in your uterus that can metastasize to your lungs and your brain.” Her first husband could not deal with the miscarriage, the uterine cancer or the molar pregnancy—none of it. At one point Annamarie’s doctor prescribed a divorce. In addition to the divorce, Annamarie underwent months of chemo. “And when I finally kicked [the cancer], we had a big party at Solera to celebrate,” she says. “I was probably three months into dating Paul at that point.”
Three years later, she and Paul were married, and not long after, Annamarie was pregnant with her second child, Elle. “I didn’t even know we could try,” she says. “My doctor was like, ‘You’ve been in remission for five years, go for it.’”
And then, six months after Elle was born, Annamarie was pregnant with Eve. “I thought I had the flu,” she says. “I felt like garbage and I saw my doctor and she’s like, ‘You don’t have the flu. . .’”
Things were going great—smooth pregnancy, smooth delivery—until her pediatrician suggested that echo. An hour later the same pediatrician was standing in the doorway informing Annamarie and Paul that their baby was in heart failure. She told them they had to decide which hospital Eve should be taken to. “Eve was just lying next to me,” she says. “We were just putting on her outfit to go home. And now I’m like, Can you give me a minute?”
There is a formality to dining with Chinese medical professionals on a diplomatic tour that begins with the presentation of the business card. Before sitting down, you meet with each VIP, and they present their card to you with both hands, like it’s a little portrait. Eye contact is strictly held. In every dining situation with The Newborn Delegation we were led to a private room with a large round table topped with a lazy Susan. There is a shot glass at each seat to be constantly filled with “wine”—only the wine is a grain spirit known as baijiu, which tastes like 100-proof gasoline and smells like a goat farm.
But the ceremony really does loosen up all the awkward hierarchies in the room—the nurses hanging with the head nurse, the doctors hanging with the hospital directors. The strong wine soothes any native prejudices between Chinese and Americans and gets everybody smiling. Baijiu diplomacy is effective. And it also seems to neutralize the heat from the various Sichuan peppers used in the cuisine. Win win win.
Annamarie has developed a technique for dealing with the baijiu—relentless concentration on data. Her natural wonkishness seems to keep her clear-eyed. At these dinners I became accustomed to her advising me on the foundation’s relationship to every single person at the table, reconstructing timelines, patiently answering my questions on Chinese policy or pulse ox technology or the details of certain surgical procedures. She makes connections fast, whether between people that can help her cause or between statistics and policy.
Annamarie Saarinen visiting a baby at a hospital in China's Sichuan Province.
Annamarie Saarinen at a hospital in China’s Sichuan Province.
In the Chinese office of newborn health in the massive Sichuan capitol of Chengdu (14 million people, and at night, the place looks like the set of Blade Runner), doctor and professor Jun Zhu, the director of the office, explains that Annamarie isn’t some white savior—China has had its own newborn screening programs up and running since 1988. Two hundred and twenty screening laboratories across China report to this office. For now, they only screen for three conditions: hearing, PKU, and hypothyroidism. Zhu has high hopes for the pulse ox pilot. “Congenital heart disease is ranked number one [among all birth disorders],” Zhu says. “So we are interested in the number-one disease.”
Despite the statistics, and the demonstrable need, when it comes to changing newborn health policy, there is an intrinsic power with a mother talking about her baby’s health. The approach sweeps aside political difference, whether in the United States or China. When I speak over the phone to Dr. Rodney Howell, the founding chair of the secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which was established by congress, he explains that the Chinese approach is similar to the philosophy of the United States. “You’re basically identifying a really serious condition in an apparently healthy baby,” he says. “And the other critical thing is, nothing is on the panel that we can’t do something about—you have to have a proven benefit of diagnosis.”
Newborn screening actually has a Minnesota connection. In 1961, Dr. Robert Guthrie, a microbiologist who earned his degree at the University of Minnesota in the early 1960s, developed a test for PKU, or phenylketonuria, a genetic disorder where the absence of an enzyme destroys the infant’s ability to digest the mother’s milk, causing malnutrition that results in severe intellectual disabilities. Guthrie developed a simple test where blood was extracted from the heel immediately after birth. The babies who were flagged were given a formula that ensured normal development. According to Howell, that initial PKU test became the model for newborn screening because it satisfied three criteria: It was a rare, serious disease that could be diagnosed with a cheap test, and there was an affordable treatment that produced dramatic, sometimes lifesaving benefits.
Initially, the screening tests were overseen by each state’s board of health, but with the addition of more and more conditions, this became difficult to manage. So in 2004, the tests were standardized nationally, brought under the direction of the secretary’s Advisory Committee.
In July 2009, Annamarie began to develop a pilot pulse oximetry study in the Fairview Health Services System, similar to the one they’re running in Chengdu. That fall, Annamarie spoke about the pilot program at a State Department of Health meeting. Dr. Piero Rinaldo, a Mayo doctor who sat on both the Minnesota panel for newborn screening and the federal panel responsible for advising the Secretary of Health and Human Services, introduced himself after her speech.
“Dr. Rinaldo found our information very compelling,” Annamarie says. “And he told us about this federal panel that I didn’t even know existed.”
In January of 2010, Rinaldo nominated pulse ox screening at a meeting of the federal panel, which voted unanimously to consider it. A group of doctors and scientists at Duke began an external review of the screening, which included a literature review and dozens of interviews with cardiologists, neonatologists, pediatricians, geneticists, and one parent: Annamarie Saarinen.
Annamarie then filed for a 501(c)(4) coalition, and three months later she filed for a foundation. At a panel meeting in D.C. in the fall of 2010, Annamarie brought Eve, who was now 18 months old, along for her presentation, as well as the preliminary results from the Newborn Foundation’s pilot study. At the end of a very long, tedious meeting, the panel voted to recommend pulse oximetry for inclusion. Kathleen Sebelius, the Secretary of Health and Human Services at the time, had 120 days to respond, but by then it was 2011, and the congressional debate on ObamaCare was in full swing. Annamarie’s crusade was in danger of becoming politicized. According to Brown, Annamarie’s idea had encountered some low key resistance initially—doctors can be very self-assured when it comes to their ability to clinically diagnose—but she had yet to encounter a storm.
“[The Newborn Foundation’s first executive director] Jim Bialick and I were like, ‘We gotta get on this,’” she remembers. “If [Sebelius] says no, it will set the committee group back to zero.”
In the span of four weeks, Bialick and Annamarie met with 77 members of congress. All of that pressure eventually resulted in Senator Dick Durbin calling Sebelius and urging her to accept her panel’s recommendation to add pulse oximetry to the national panel, which Sebelius did, after almost a year of hemming and hawing, in September 2011. After that, states quickly fell in line.
After spending time in Sichuan, our group flies to Shanghai to visit Fudan University. Fudan is a massive campus where the pediatricians see 7,000 patients a day—10 times the amount seen by any American pediatric hospital. And like most institutions in Shanghai, there are plans for much more construction.
I meet with Dr. Guo-ying Huang, head of the children’s hospital at Fudan, and he explains that beyond the statistics, Annamarie’s story moved Chinese officials. In 2011, after the Newborn Foundation achieved its unexpected breakthrough with Sebelius and the HHS screening panel, Annamarie huddled with her colleague at Ainsley Shea, Jing Zhang, a Chinese national who had graduated from St. Thomas. Zhang worked with Fudan, Huang, and the National Office for Maternal and Child Health to set up a symposium in Beijing where Annamarie presented the Newborn Foundation’s agenda to China.
The Yu statue on Mount Wen
The Yu statue on Mount Wen.
“There were about 250 people there,” Huang remembers, “and at that meeting, Annamarie told the story of Eve. And that moved many people.”
I asked him if the Eve story was as compelling as Annamarie’s data on critical congenital heart defects in newborns.
“Well, both,” he says. “Her story reflected many families which have the same problem. Because if one family has a kid with a critical congenital heart disease, they would be in a very difficult situation and they need help from society, both from charity and especially the government.”
Annamarie says it took her a few years to be convinced to harness the power of Eve’s narrative. “My approach, or the Newborn Foundation’s approach, is to not be afraid of the emotion,” she says. “And I was—for a long time actually—afraid of the emotion.” She says she didn’t want her advocacy to be about “this woman who had this experience with her baby and woe is me and it’s so sad look at all these babies dying.” She wanted doctors and officials to pay attention to the data. To see the numbers and look at the empirical evidence, and to be convinced by the test’s low cost relative to the many lives that would be saved.
“But I learned over a little bit of time that the emotion can be part of the story, and it should be part of the story—but it shouldn’t be the only story.” She says she’s learned the role that her experience has played in getting the Newborn Foundation all the way to China, and if it can work in China, just in terms of scale alone, it can work anywhere. “It doesn’t have to be all data with the alternative being that they won’t respect you,” she says. “That’s not true.”
There was an ice storm on the mid-December night in 2008 when University of Minnesota pediatric cardiologist Dr. Lazaros Kochilas was called to Fairview Southdale (the U of M hospital is in the Fairview system). “From what the echotechnician described, I thought it would be worth it to go and see the child,” he says by phone from his new position at Emory University in Atlanta. “It did not sound so straightforward. It was some leaking of the mitral valve, which sometimes can become a quite significant problem, particularly in a newborn. So I decided to go there to check her by myself and also to see the images.”
When Kochilas saw Eve, he looked at the echo imagery and determined that her heart was larger than a normal infant’s. He diagnosed moderate to severe mitral valve regurgitation—the left valve was leaky and the blood would be caught in the left side, leaving the right side to clear it out—and, later, a complicating electrical problem. Eve’s heart was getting garbled messages causing it to race uncontrollably, sometimes up to 300 beats a minute, a condition referred to as tachycardia.
The decision was made to move Eve to the university hospital for more extensive monitoring. “We still didn’t know much,” Annamarie recalls. “I saw the X-ray. I saw her heart was three times as big as it used to be. They’re trying to show me where the leaflet isn’t moving. So they brought me into the special care unit [at Fairview Southdale]—they didn’t have a NICU back then. It looks like something in space: Your kid is hooked up to all this stuff. I was going home with a healthy kid like an hour ago. And then they wouldn’t discharge me. So Paul’s like, ‘She’ll probably be okay.’ And I’m like, ‘No. You’re going [to the U hospital]. We’ll figure this out.’”
Eve was transported by emergency lifelink—a special ambulance with an incubator for newborns—to the U of M, where Kochilas diagnosed a very rare combination of conditions: a mitral valve defect together with Wolff-Parkinson-White syndrome, a condition that causes a rapid heartbeat.
“We were told she might not make it through the weekend,” Annamarie says. “And if she does she’ll have to go on a transplant list.”
That weekend Annamarie and Paul brought the other two kids into the hospital to meet their new sister for possibly the first and last time. Not that Annamarie was giving up on any front. “I have a triage brain,” she says. “You put something in front of me and you just triage the current situation and you move on.”
Surgery was considered a last resort, and Kochilas was hopeful a three-pronged course of medication would allow Eve’s heart to develop normally. And for a time it worked. Eve was even allowed to go home for a few weeks. During this time, Annamarie corresponded with other mothers on a “birth board” where mothers shared advice and stories. It was through BabyCenter.com that she met a mother in Rhode Island whose baby had the same extremely rare diagnosis—mitral valve defect together with Wolff-Parkinson-White. “And she was referred to this surgeon in Boston, Dr. Pedro del Nido,” Annamarie says, “and her child was diagnosed by this Greek cardiologist from Rhode Island.” The very same Greek cardiologist now taking care of Annamarie’s daughter, Dr. Lazaros Kochilas.
But in late February, Eve’s tachycardia returned with a vengeance—her heart was racing out of control and although she was barely 3 months old, Annamarie and Paul and the U of M team had to make a decision. A surgical consult was scheduled in Kochilas’s office with the chief pediatric cardiac surgeon at the U of M, Dr. Jim St. Louis.
“I remember Paul being amazingly calm and focused and able to ask questions that I might forget,” says Annamarie. “He did a great job of asking doctors and nurses and ferreting things out. And this time he asks [Dr. St. Louis], straight up, ‘How many times have you fixed a kid with what Eve has?’ And he says, ‘Well, once I did a . . .’ No way. Kid’s a guinea pig. Because what she has is so rare. You just don’t see babies with mitral valve prolapse, and because she had the Wolff-Parkinson-White syndrome, she needed an ablation.” An ablation is a delicate procedure where a catheter is inserted into the thigh and brought up a vein all the way to the heart, destroying the tissue that is keeping the abnormal rhythm going. “And I’ll tell you there are two hospitals in the country in 2009 that would ablate an infant,” Annamarie says. “Boston and Texas Children’s. Eve weighed 9 pounds—at 3 months, her heart was a little larger than a walnut.”
More and more, Boston, and the pioneering work of del Nido, was looking like the best option for the Saarinens. But before making a decision about whether to fly Eve to Boston or stay in Minnesota, Annamarie needed to have one more frank conversation with Kochilas. So the next day she found him in the hospital and literally dragged him into a broom closet.
“Whether it’s the U of M or Children’s,” Annamarie says, “they make more money at the heart center than anywhere else in the hospital. These surgeries are a quarter-million dollars a pop—they do not want to refer you out of the hospital.”
In the broom closet, Annamarie asked Kochilas, “If this was your daughter, what would you do? Would you do the surgery here or would you take her to Boston?”
He said he would take her to Boston.
I ask him if he remembers the conversation.
“I do,” he says. And in his version of events, he remembers bringing up del Nido himself. He says he had confidence in Dr. St. Louis, his chief of cardiac surgery in Minnesota, but reserved del Nido as an option, even though Boston was so far away. Kochilas remembers cautioning Annamarie that, “it’s not that easy going to a place without local support,” but he also admits that this was a very rare case and perhaps it called for a very rare surgeon. “I told her there are only very few surgeons who can reconstruct the valve in an efficient way that will last for many, many years.”
When I tell Annamarie how Kochilas recalled what happened, she was curt. “That’s not what happened,” she says. Even while offering, “I understand why he would say that.” She excuses him by pointing out that while he was at Rhode Island he referred patients to del Nido all the time. She makes a point to say that she never doubted Kochilas’s moral or clinical integrity, and she is eternally grateful that he ultimately made the decision to refer Eve to Boston and to facilitate the collaboration over her care with the two hospitals. But she’s sticking to her side of the story. And for all her evenhanded diplomacy, her side of the story makes it obvious that there is a more ferocious, disruptive side to Annamarie that I haven’t been made privy to.
I ask her if it was difficult to confront a doctor. “No,” she says matter-of-factly. “I have to do it all the time as a lobbyist—I have to go to people on both sides of the aisle and argue my point succinctly. Because I’m either trying to get a piece of legislation passed, adopted, funded, or killed. Each time I enter a room, I do a mental assessment. And everybody has a label: You’re either an opponent, a supporter, or a neutral.”
Eve’s surgery was scheduled at Boston Children’s for the Friday and Monday on either side of Easter in April of 2009.
Annamarie Saarinen and her daughter
Annamarie with her 7-year-old daughter Eve—who is the inspiration for the Newborn Foundation’s infant heart screening advocacy.
Meanwhile, Annamarie had questions. “I just wanted to know, did we get hit by lightning or does this happen to other people?” She started reading anything she could about neonatal screening, and then pulse oximetry, reading the paper published earlier that year by a Swedish scientist, Anne Granelli. Annamarie refers to Granelli—who was an echocardiogram technician in Stockholm when she published her breakthrough paper on neonatal pulse oximetry screening in 2009—as “the godmother of pulse ox.” Grinelli’s Swedish study showed that doctors missed around 44 percent of newborns with critical congenital heart defects. Her findings were corroborated with a cohort British study that same year. That was enough to begin Annamarie’s conversations with Kochilas about a pulse ox pilot in Minnesota.
On the Friday before Easter in Boston, Eve became, at 3-and-a-half months, the youngest baby ever to be ablated in the United States. And on Monday, del Nido at Boston Children’s Hospital—a surgeon who has been innovating infant mitral valve reconstruction for 15 years—performed a painstaking six-hour-long surgery to reconstruct Eve’s mitral valve.
Del Nido is unsure if pulse oximetry would’ve flagged Eve’s condition, but he says early detection could’ve made a dramatic difference.
“The purpose of the pulse oximetry is to pick these things up early before babies get into trouble,” he says. “The thing that made Eve’s surgery more complex is the fact that she’d had a lot of valve leaks for a while, and she was really sick by the time she showed up. So if you pick it up early you’re able to operate and do the repair before the kids get sick.”
It’s unknown how pulse ox screening would’ve changed Eve’s life, but her parents are trying to walk a fine line in ensuring normalcy for a 7-year-old that has already been to the hospital more times than most 7-year-olds ever will. As the inspiration for the Newborn Foundation, Eve gets signed photographs sent to her from Steven Spielberg, and every fall she lights up the room at Babies and Badasses, the foundation’s annual gala. But she’s also her techie father’s daughter—she loves playing Minecraft and Neko the Cat on her iPad. And she employs the picky logic of a 7-year-old: When I bring an ice cream cake for dessert at a recent dinner at Annamarie and Paul’s home in Shoreview, Eve informs me that although she likes ice cream and she likes cake, she doesn’t much like cake unless it’s plain chocolate or vanilla, and she doesn’t care that this is ice cream in the shape of a cake. It’s still the wrong kind of cake. Then she politely asks her mom if she can go to her neighborhood friend Madison’s house to play in the yard.
When we were in Beichuan County, home of the Big Wu statue, we stopped at another historic site. In May 2008, nine months before Eve was born, the Great Sichuan Earthquake detonated deep beneath the Beichuan Valley. Nearly 70,000 people were confirmed dead, another 18,000 were missing. The ruins of old Beichuan have been preserved by the Chinese government in order to bear historical witness to a tragedy that, according to some of the placards located throughout the ruins, couldn’t have been prevented but could have been mitigated with better building codes, an earlier warning system, a more orderly evacuation procedure. This is unlike the secretive, Facebook-blocking China we’ve heard about—here is an epic monument to failure. And somehow it felt hopeful.
We took two golf carts, and rolled past an entire city in ruins: concrete structures that looked like teetering stacks of pancakes, an old hotel that appeared to have been crushed like a beer can. Halfway through, there was a memorial, where an entire school had been swallowed by a massive rockslide. One of the pediatricians in our party burst into tears. The weight of this tragedy, the tons of rock and dirt that had been sheared away from this mountain, had a literal quality that knocked the wind out of me. It was disorienting. Annamarie was calling out—it was too much for the pediatrician, she said. The pediatrician hadn’t been back since she lost her son here, she told me. We needed to go.
The two golf carts rolled through the rest of the abandoned city. I saw a woman in a red hat dumbstruck in the face of entire city blocks that looked like they were resting in a massive, yawning dump. We took pictures on our iPhones, and I thought about how the Big Wu held back the waters and united China for the first time. I thought about building codes and inexpensive fixes, the drudgery of civic engineering and cheap screening procedures, the practical work that keeps human sorrow at bay.
I watched Annamarie climb back into the golf cart after comforting the nurse. Here was a Minnesota mom with a skillset that has allowed her to not only help her daughter, but to help thousands of daughters and sons around the world. In the last five years, 12 million babies have received pulse ox screening in the United States, and Annamarie has presented 88 times at different academic lectures and symposia. And in addition to China, Morocco, Panama, and Kenya, screening programs are being developed in the Phillipines, Nigeria, India, Georgia, Bolivia, and Malaysia.
I remembered something she told me about the power of the mother. “To be honest,” she said, “I don’t know that I ever tied the power or the emotion strictly to the function of motherhood or the function of giving birth to Eve. I felt empowered when Paul and I found a pathway that was gonna give her a better chance for survival. That was empowering to me.”