Babies with multiple birth defects were born to US women infected with the rubella virus in the 1960s
What these families have needed may signal what's in store for Zika babies
One side of the bedroom is an explosion of pink, from the hair accessories and dangling trinkets to the stuffed animals and laundry hamper. The other, starting with the fuzzy pillows and puffy comforter, is an ode to purple.
Kim Woodford is the pink aficionado in this well-kept townhome in Brooklyn. She’s 51 and believes in Santa. Her roommate, Darvena Idlet, is the same age; they’ve lived together for about 45 years.
What bound these women together so long ago was an illness that struck while they were in their mothers’ wombs. It robbed them of their hearing and much of their vision, and it damaged their brains.
They have congenital rubella syndrome, which they acquired during an outbreak of the rubella virus, or German measles. The epidemic swept across America from late 1963 into 1965, infecting an estimated 12.5 million people. And though the symptoms of the virus are generally minor, if detected at all, it takes its harshest toll on the unborn babies of infected pregnant women.
The story of Kim and Darvena, and thousands of others like them, has largely been forgotten in the United States. But the threat posed by a new virus, Zika, has those intimately familiar with the 1960s rubella outbreak asking pointed questions.
Who is going to take care of the babies irreparably damaged after being born to Zika-infected women? What resources will be available to their families, whose lives will be forever changed? Who’ll step in to help those mothers left alone after fathers walk away? And what will become of these children when they are adults still in need of around-the-clock care?
What happened more than a half century ago, they say, should serve as a warning now.
Florence Woodford knew her baby might be harmed when she contracted the rubella virus early in her pregnancy. A doctor with the health department who paid a visit to her Brooklyn home told her as much. If her child survived, he said, she or he could be saddled with a long list of disabilities.
Hoping for the best
Though it was largely illegal at the time, the doctor suggested Florence consider having an abortion. The US medical community was finding ways to work around restrictions; ultimately the rubella virus helped make abortion legal.
But abortion wasn’t an option for Florence, a devout Catholic. She chose to hope for the best and believed by keeping her baby she’d be rewarded. When Kim was born with cataracts, she rejoiced.
“Oh, that’s wonderful. That’ll be OK. We could fix that,” Florence, 76, remembers saying about her second born. “And then as time went on, we found out it was a lot more than that.”
Kim was among the 20,000 US-born babies harmed by congenital rubella syndrome in the mid-’60s. They faced a lifetime of defects including deafness, blindness, heart disease, neuromuscular tightness and spasticity, intellectual disabilities, autism and more. During the same period, there were 2,100 neonatal deaths and 11,250 abortions and miscarriages, according to the Centers for Disease Control and Prevention.
Kim “looked different,” Florence recalls. She was unable to roll over or sit up. She couldn’t hear. When Florence held her, Kim threw back her head as if she were struggling to see. She cried more than other babies.
The challenges Kim and her family faced would only grow as she did. Some of the earliest doctors who saw her said she’d never walk or be toilet trained.
But then a social worker showed up, first prodding and later insisting that Florence take Kim into Manhattan, where Dr. Louis Cooper headed up the Rubella Project, a long-term research and care effort he founded at Bellevue Hospital.
Florence wept the entire ride there. She was sure Kim would be taken away from her. Instead, with the doctor’s help, she found hope.
Desperate for answers
Cooper was a medical student in the 1950s when Jonas Salk developed the first successful polio vaccine. That discovery ignited a new sort of excitement about the field the aspiring doctor was entering.
“It proved we could keep people healthy,” he says.
Rubella virus today
He wanted in on that euphoria and, after completing his military service, pursued a fellowship to work on a vaccine for staph infections. But then a friend isolated the rubella virus, not long before the epidemic started in the United States. Cooper turned his focus toward rubella.
While scrambling to develop a rubella vaccine, he and others became overwhelmed by what pregnant women were experiencing. Mothers, with heir babies in their arms, began showing up in Cooper’s Bellevue Hospital lab, desperate for assistance and answers.
“My temperament is not just to do research on people; you have to serve them,” Cooper says. “And so the Rubella Project was created to help these families.”
That’s how Cooper, a trained internist, transitioned into becoming a pediatrician. He assembled a core team of 25 people, including doctors, social workers, educators and therapists. With more than 300 congenital rubella syndrome children in their care – and hundreds of other families looking for guidance – the team set out to give them a chance in life.
A search for independence
There were schools for the deaf. There were schools for the blind. There were programs for the “mentally retarded,” as they were known in the 1960s. But schools for all of the above – and then some? There was nothing like that.
The most severely disabled children with congenital rubella syndrome were often destined for a lifetime of institutionalization. So were those whose parents couldn’t bear this kind of child-rearing responsibility or couldn’t find an alternative.
Cooper and his team believed they could do better by these kids and their families. One of the educators on his team – whom he’d later marry – ran the Rubella Project preschool to help children like Kim get started. Cooper also lobbied hard to expand the scope of specialized schools and earn entry and adequate resources for his young patients and the people caring for them.
“You didn’t have to say a lot,” Cooper remembers of his visits to lawmakers, policy leaders and education officials. “You just had to show them the pictures and describe the disruption to families.”
He watched families fall apart. Kim’s family clung together, but still they were tested.
Kim is legally blind, completely deaf and nonverbal. A heart defect required surgery in her early years. She’s intellectually disabled and has behavior disorders, as well as obsessive compulsive and autistic tendencies. More and more, as she’s aged, she suffers from mobility issues and often relies on a walker.
At first, teaching Kim seemed impossible. First glints of progress appeared while she was in the Rubella Project preschool. Then when she was almost 6, thanks to Cooper’s advocacy, Kim, Darvena and a small group of others headed off to the Bronx to attend what was then the New York Institute for the Education of the Blind. At the state-run school, where she lived Mondays through Fridays for the next 16 years, the instructors managed to do things for Kim her family couldn’t accomplish.
She began to read, write and sign. She learned to ride a horse, row a boat and use a toilet. She found, in the safety of her school community and living with peers, a sort of peace.
The family learned sign language, but still, when Kim was home on weekends or breaks – by then, the family had moved to Staten Island – she was enormously difficult.
“I wouldn’t wish it on anybody with what she was like,” her mother says. “There are not a lot of happy memories.”
Kim could not be disciplined or managed. She was an escape artist who figured out every lock they put on the front door. When she was about 6, police officers showed up in the middle of a winter night with Kim. She’d been spotted walking down the road barefoot, wearing only a nightgown. Another time she strolled into a neighbor’s kitchen at 2 a.m., looking for ice cream. A third time she barged into an Orthodox Jewish home in the middle of a religious service.
On car rides, she’d throw things out the window, strip naked or try to get out while the car was moving. The family learned to suspend their Christmas tree from the ceiling because otherwise she’d knock it over. If a light was broken in a restaurant, she’d freak out, which meant on the rare occasions when the family dared to eat out, they’d first have to case the place to make sure it was “safe.”
Her frustrations would sometimes bubble over into rage – and, at times, violence. Making matters worse, her tolerance for pain was otherworldly. Three times in one month, when she was 8, she crashed her head through a window in the family’s home. By the third visit to the ER, Florence feared she and her husband would be accused of abuse.
Florence, who had a total of five children, absorbed the brunt of Kim’s anger. Kim was smart enough to know she was different from her siblings, and in her limited understanding, mothers were supposed to fix things. Kim would motion to her ears and demand that they work. She blamed Florence when they didn’t. Kim pushed, hit and tossed her mother around. She didn’t know her own strength.
Her three brothers wouldn’t invite friends over when Kim was around. They feared she might embarrass them by taking off all her clothes.
Jill Taylor, Kim’s younger sister by 15 months, shared a room with Kim when she was home. As the older sister, Kim struggled to understand why Jill was taller, had friends and got to drive. A couple of times Kim stole car keys and had to be stopped before trying to take the wheel herself.
She, too, wanted to be independent.
Jill’s heart breaks when she thinks about what her parents went through – and what Kim’s future might have looked like if not for congenital rubella syndrome. As a little girl, Kim used to open up encyclopedias and stare at medical entries. Jill is sure her sister would have been the brains of the bunch.
“You can’t help but wonder,” Jill says through tears. “What would Kim have been?”
The best life possible
While she was in school, Kim’s family took solace, knowing she was cared for, calmer and being given the best life possible. As she approached graduation at 22, they worried: What was supposed to happen next?
Moving Kim home full-time was a terrifying proposition, and it wasn’t what she wanted, either. From the moment Kim donned her blue cap and gown, she sobbed the entire day. She didn’t want to leave.
The Woodford family was not alone in needing a plan.
They banded together with other families whose children were aging out of the system. Cooper’s example, and years of raising children with congenital rubella syndrome, taught them how to fight for services.
In 1983, these parent-activists in the New York metro area established Advocates for Services for the Blind Multihandicapped, a private nonprofit agency to develop small group homes where their children could live and age with dignity.
Today, the organization runs six residential programs in the Bronx and Brooklyn serving 53 individuals, 22 of them with congenital rubella syndrome.
‘This is your home’
Kim eats too fast and needs someone to watch her during meals so she won’t choke. She clenches her fists and smacks them against her mouth when she becomes agitated. Her cupboard holds cake mixes and frostings, as she loves to bake – but is less keen on sharing. She can’t start her day without a cup of coffee, which she makes scalding hot with heaping spoonfuls of sugar.
Darvena loads every game app she can find onto her smartphone, but she only likes to play bowling. Like clockwork, every weekday late afternoon, she can be found on the couch watching her soap operas. No one believes she understands the storylines, but the ritual comforts her. It reminds her of time she used to spend beside her mother, who religiously watched these same shows.
When the two play a children’s card game, Darvena knows to reach out and wave her hand to remind Kim when it’s her turn.
Always near in their first-floor Brooklyn home is Michael Blake, who these two have grown up with since the 1960s. He sits before his laptop, playing “Wheel of Fortune.” He might guess random letters, but mainly he just likes hitting the button to spin the wheel. Beside him is his growing collection of key chains. He likes to relax on his bed with his headset on; he can’t hear the music but enjoys the vibration.
Along with a fourth, more recent addition, they are family. They respect each other’s space. They vacation together, go to Broadway shows and enjoy the same recreational activities. Bowling is a favorite.
Five people who are less independent live on the floor above. Of the nine residents here, seven have congenital rubella syndrome. They have 24/7 help, including staff who are also deaf, to manage residents’ schedules and medicines and attend to their needs – helping them be as independent as possible.
“We come into their home as guests who are here to support them,” explains Nick Hassan, the coordinator for Advocates for Services for the Blind Multihandicapped in Brooklyn. “We make sure that they know, ‘This is your home, and you decide how it works.’”
Part of their jobs is making sure the residents get where they need to go each day.
“To me, there’s nothing wrong with them,” says Tanya Rodriguez, the residence manager. “They’ve overcome what wasn’t expected of them. I just want people to see them the way I see them.”
Michael looks at his watch, anxious for his ride to Kohl’s department store. He’s worked there for years, doing jobs that include tagging jeans. Kim and Darvena aren’t employed, but they go to other day programs that keep them busy.
What they deserve
The Woodfords visit Kim and her housemates regularly, but not every resident of these group homes is so lucky. Parents who are still alive are in their twilight years. Some have moved away or are otherwise physically unable to visit.
Having Kim there means the world to Florence, who, despite the difficulties, says her daughter has been her greatest life teacher. Kim has taught the family perseverance, patience, unconditional love and kindness no matter life’s adversities. The journey also has given Florence a mission – to make sure her daughter, and others like her, get what they deserve.
“It’s a tremendous source of comfort,” she says of Kim’s home. “It means she has a better life, that we have a better life. … She is always on the move. It’s given her a lot of freedom.”
The day will come, though, when Kim and her housemates won’t be as active. What will happen when they’re not able to spend as much time out in the community? In coming years, how will their needs change?
“It’s always a fight to keep funding now,” says Jill, Kim’s sister, who is the vice president of the agency behind these group homes. “We’re just starting to think about when they age.”
What Zika babies need
What Kim, her peers and their families have been up against the past 50 years may foreshadow what’s in store for babies born with the effects of the Zika virus.
“It’s not just when they’re babies. What’s going to be there for them? Do they have a support system in place?” asks Jill. “Are there going to be the right kind of people to teach them? How teachable will they be? It’s all a big question mark. It’s frightening, and it’s just so devastatingly sad.”
These are the same questions Cooper, 84, hopes communities and politicians are asking. The fact that US lawmakers are still squabbling over emergency Zika funding frustrates him beyond measure.
“Congress needs to stop fooling around,” he says. “Every day we fail to put resources to work means more misery.”
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The families he came to know in the New York area found power in numbers, were unique in their activism and benefited from resources available in a big city. He can’t imagine what life would have looked like for his former patients if they’d been born in rural America or, say, a remote area of Brazil.
“We’re just learning what the Zika babies are going to need, but what’s clear is they’re going to need a lot and they’re going to need it for a long time,” he says. “And their families are going to need even more. … The stress is enormous.”
The clock is ticking to mobilize on behalf of those babies and their families. The best he and those he’s helped over the years can do, they say, is sound the alarm: It’s time to wake up.