“This Baby Is My Life”
Ludmylla giggles with delight as her grandmother smothers her with kisses and talks to her in a soothing voice. Ivalda holds her one-and-a-half-year-old granddaughter tightly, smiling down at the fragile bundle in her arms. “She is my life,” Ivalda whispers. A group of doctors and their assistants encircle the two of them in loving support. Yet, some have tears in their eyes.
This emotional exchange took place in a bustling community clinic supported by FG – Centro Universitário (FG), a member of the Laureate International Universities network located on the northeastern coast of Brazil near Recife, the capital of Pernambuco. In early 2015, the city became ground zero for an outbreak of the mosquito-borne Zika virus that spread horror and heartbreak across the region. Pregnant women who were infected by the virus began having babies, like Ludmylla, who suffer from microcephaly, a rare neurological disorder. Characterized by defective brain growth leading to abnormally small heads at birth, this devastating condition is associated with arrested cognitive, motor, and psychological development, as well as epileptic seizures. These babies sometimes die within a year. Ludmylla, who is unable to hold her head up or speak, could possibly live into her teens, depending on her level of impairment. There is no known cure.
Ivalda Caetano Dias, age 36, lives with her extended 10-member family in the impoverished rural town of Sao Jose da Coroa Grande — a three-hour bus ride from the FG clinic. Four days a week she gets up at three in the morning to prepare Ludmylla for a long day of travel and medical appointments. Previously the only employed member of the household, Ivalda was forced to quit her job when the baby’s mother, Ivalda’s 21-year-old daughter-in -law, was unable to look after her sick child. Today, the family strains to survive on Ivalda’s mother’s meager retirement check and government disability support for Ludmylla. It is estimated that caring for a child with microcephaly could cost more than $200,000 a year in medical expenses. The average annual income for a family like Ivalda’s is $6,500.
Ivalda struggles valiantly to care for her granddaughter while balancing the needs of the rest of her family. Her plight reflects the challenges facing thousands of other Zika-impacted families across Brazil, the majority of whom live in poor, underserved communities. But unlike many of them, Ivalda has access to the FG Community Clinic, a pioneering project that supports both the babies and their caretakers.
“We Realized Something Was Terribly Wrong”
“A few years ago, we saw only two or three cases of microcephaly a year,” explains Dr. Maria Rozivera, a leading pediatric neurosurgeon affiliated with Brazil’s Altino Ventura Foundation. “Then all of a sudden, in early 2015, there were five or 10 cases coming into hospitals every day, and we realized something was terribly wrong.” By the end of the year, more than 1,900 babies were born in Pernambuco with Zika-related microcephaly — an unparalleled outbreak of the disease that soon overwhelmed the medical community.
Most of these cases, explains Rozivera, were from impoverished areas where poor sanitation, inadequate public health services, and the presence of standing water combine to provide the perfect breeding grounds for the aedes aegypti mosquito — the carrier of the Zika virus. Rozivera and others wondered — was that a clue to the epidemic’s origins?
Working collaboratively across specialties, researchers including Rozivera sought to discover the cause of the outbreak — and eventually demonstrated a strong link between the Zika virus and microcephaly. While there is no vaccine for the condition, studies show that early care and exercise can improve these babies’ lives. This was a public health catastrophe, Rozivera said, but there was one positive outcome. “People across the medical profession — from researchers to ophthalmologists to radiologists — became committed to solving this crisis together.”
“Small Things Began to Grow Into Something Larger”
The medical community was not alone in its collaborative approach. Teachers from various departments at FG began to discuss what they could do together to minimize the suffering of these acutely impaired babies and their families. Psychology professor Maria de Fatima Casa Nova and law professor Alessandra Bahia decided to organize a Congress of Microcephaly at the university in June 2015, bringing together professionals in fields such as medicine, research, and law, to explore how to best address the epidemic.
In the weeks following the conference, professors Casa Nova and Bahia reached out to their FG colleagues and community leaders to discuss next steps. They learned, for example, that the local lawyer’s association wanted to help Zika-impacted families gain access to transportation, disability, and other public welfare programs. Bahia began to wonder whether her law students could get involved. Casa Nova realized her colleagues could help mothers dealing with depression and other psychological problems brought on by the tumultuous changes in their lives — and that her students wanted to help.
The idea of creating a microcephaly-focused program that embraced this broader vision of family care grew organically out of these exploratory discussions. The program would be housed in the FG Community Clinic, which was on FG’s campus. In September 2015, the clinic’s microcephaly program opened its doors, with Casa Nova and Bahia welcoming their first patients. The clinic offers families like Ludmylla’s a range of inter-professional care, including physical therapy to promote the babies’ motor development. The goal is to reduce their muscular pain and ensure greater autonomy in their lives. Helping mothers cope with their emotionally overwhelmed lives is also critical. “They are depressed and mourning for the healthy child they had dreamed of having,” explains Casa Nova. In response, the clinic offers mothers psychological and family counseling and legal advice to promote and protect their rights.
Bahia felt a particularly emotional connection to these families. Pregnant at the time she started working at the clinic, she gave birth to her healthy baby within days of when Ludmylla was born. “My heart was breaking every day,” she said.
The clinic’s student internship program is critical to the program’s success. “It was a two-way street,” says Casa Nova. “We wanted to help the community and give our students an opportunity to apply in the clinic what they were learning in the classroom.” The clinic, she says, “was like an embryo; small things began to grow into something larger.” Since the clinic opened, more than 600 FG students from the fields of nursing, psychology, nutrition and law, have participated in the internship program, and some 50 Zika-impacted children and their families have benefitted from its services. “I was surprised that a university would enter into this crisis so quickly and so deeply,” says Dr. Rozivera, who has become an invaluable advisor to the project.
Promoting a Culture of Collaboration
Interdisciplinary collaboration with a focus on a social mission has long been a hallmark at FG. “I have always been a firm believer in working in groups,” says Casa Nova. “Working alone keeps your mission too narrow and specific, but in a group, you get much more done; you can scale up your efforts to reach more people and are able to impact more lives.”
FG’s rector, Pierre Lucena, reinforces this cooperative, mission-driven approach by bringing students and professors from different departments together to stimulate discussions around how to address social challenges. He points out that students love this culture of collaboration and are demanding a new way of learning. “They don’t just want to be in the classroom; they want to learn through practice and apply what they learn to benefit the community,” he explains. “At the clinic, students experience a different reality and see different disciplines working together.”
Lucena believes FG has a unique responsibility to be socially engaged, given its proximity to impoverished communities. “I hope what we’ve done here will become a model for other universities, because I believe what happens in the clinic is even more important than what happens in the classroom.”
Helping Families Live With Dignity
The impact of the clinic can be seen in the transformed lives of families who receive services, as well as the students and faculty who work with them. Kamila Alves Fonseca, a 25-year-old physical therapist who coordinates the PT sessions and works with the student interns, is proud of the developmental progress that the babies with microcephaly are making. Physical therapy and exercise help the babies become stronger, more flexible, and more self-sufficient. Fonseca and her staff train the mothers to perform these exercises at home to accelerate their babies’ progress. “We help them live with dignity,” she says.
Working as interns at the clinic has changed the way some FG students think about their social responsibilities after graduation. Twenty-four-year-old law student Gerlane Maria Ferreira, the first member of her family to go to college, says the opportunity to provide mothers legal advice and to work closely with her fellow students has helped redirect her career plans. Initially interested in joining the police department, Gerlane now hopes to become a criminal defense lawyer. “The best part of my work here is fighting for the rights of these families,” she says.
The Power of Love
Inside of Ivalda’s three-bedroom cinder-block house, there is a painting of Ludmylla in a pink dress with a crown on her head. A nearby table holds containers of pills and other medicines. The sounds of a nearby rooster, an occasional motor bike, and the yells of children playing soccer on the dirt road outside do not bother Ludmylla, who is taking a nap in Ivalda’s arms.
“She was going to be my first granddaughter, and I was so excited about her birth,” Ivalda recalls. “When the doctor told me she had microcephaly, I was terrified she might die.” Ivalda’s days have since changed dramatically. “I used to take walks, see my friends, go out,” she says. “Now, Ludmylla is 100 percent of my life.” With tears running down her face, Ivalda talks about the fierce and unconditional love she has for her granddaughter. It’s what motivates her to keep going. “If someone says ‘no’ to me, I don’t accept that; I fight for her until I get a ’yes,’” she says. “I feel like I’m a lion ready to protect her at any moment.”
Ivalda remembers the day she first arrived at the FG clinic, expecting the staff to reject her and Ludmylla as everyone else had done. “But they said, ‘Yes, we will help you,’ and they opened their hearts to us.” Without the clinic, she says, “I would feel completely alone; now I don’t.”
“It’s a Collaboration That Never Ends”
While the incidence of Zika-related microcephaly in Brazil has fallen dramatically in the last year, the community’s demand for the clinic’s services continues to grow. “It’s a collaboration that never ends,” says Casa Nova as she and Bahia exchange smiles. Looking toward the future, they both feel a sense of urgency to expand the clinic’s services. Recognizing that the vast majority of mosquitoes breed in homes, the clinic plans to educate families about environmental and public health issues. They will also offer families classes in nutrition, hygiene, and culinary arts. “Our biggest achievement, in the long run, may be to reveal the invisible problems facing the poorest in our society,” says Casa Nova. “Every day, we are training the next generation to continue this kind of holistic approach to serve the community, to be aware of the realities around them, and to become better human beings.”
About Christy Macy
Christy Macy is a freelance writer and communications consultant. From 2000-2015, she was the Director of Publications at the International Youth Foundation (IYF), where she co-authored Our Time Is Now, a book profiling young social entrepreneurs around the world who are leading change in their communities. Before joining IYF, Macy served as a White House speechwriter for First Lady Hillary Clinton.