Rewiring The Brain -- Early deprivation and child development
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By Sasha Aslanian
Romania's Orphan Story 1966-2006
Forty years ago, in 1966, communist dictator Nicolai Ceausescu set Romania's orphan problem in motion. In order to increase his country's population and workforce, he banned birth control and abortion and created financial incentives for women to have more children. The birth rate soared. So did child abandonment. When Ceausescu fell from power in 1989, the scale of his social experiment would come to light. According to NGO estimates, more than 170,000 orphans were languishing in orphanages under appalling conditions.
"The [orphanages] varied from poor to abysmal," says Dana Johnson, an American doctor who first visited Romania in 1993. "People were very morose. There wasn't much joy in their lives and the institutions reflected that." In the baby houses, Johnson observed that children's physical needs were attended to and there was food to eat, "but there was neither the time nor the knowledge to truly promote normal development in kids." Unlike growing up in a family, the children didn't have lots of interactions with adults holding them, talking to them, singing or playing with them, and that lack of stimulation affects brain development.
In the neuropsychiatric wards, Johnson saw much worse conditions.
"There were kids who were living in environments that you would say the closest thing that I can relate to is a concentration camp," recalls Johnson.
One of Johnson's colleagues, Charles Nelson, then a professor of Child Psychology, Neuroscience and Pediatrics at the University of Minnesota, remembers making his first visit to St. Catherine's orphanage in Bucharest in 1999. "In a herd, they would all come right over to you and they were all dressed exactly the same," Nelson says. He noticed many of the children were cross-eyed, perhaps, he thought, from a lack of visual stimulation as they lay in their cribs as babies.
Nelson studies brain deprivation and calls what happened in Romania, "a natural experiment, which is an unfortunate term, because we wish it wouldn't happen, but it happens all over the world." Nelson and Johnson, along with Nathan Fox of the University of Maryland and Charles Zeanah of Tulane University, would eventually set up a lab in St. Catherine's orphanage. The Bucharest Early Intervention Project would use Romania's "natural experiment" to gain valuable insight into the recovery of neglected children.
Bringing A Child Home
Ceausescu's fall from power in 1989 didn't bring about instant reform for Romania's orphanages. But international adoption did accelerate. During the 1990s, Americans and Europeans adopted thousands of Romanian children. Parents were optimistic that the children could recover once they joined loving families.
Mary and Peter Barrett were among the first Americans to adopt from Romania in June of 1990. The Barretts and their school-aged son and daughter were living in Germany at the time. Mary volunteered to drive a truck loaded with medical supplies, non-perishable food and other essentials such as diapers to orphans in Fagaras, Transylvania.
There she met 11-month-old Daniel. "He had an eagerness," she remembers. "He was alert. He was cruising the side of his crib and looking for stimulation." The small boy had been in a hospital crib his whole life and fed only by bottle. Mary spoon-fed him a mashed banana. He reacted with surprise she recalls, "It was very odd and strange to him."
The Barretts adopted Daniel when he was 13 months old. He was small for his age, scoring in the fifth percentile of height and weight. They thought it would be a matter of "playing catch-up," says Mary. That it was "a case of delay that would be overcome by paying extra attention." She says she remained optimistic for two years. But certain things didn't seem right.
"We'd call 'Daniel' and usually a child responds to his name," she says. "[It's] one of the first things." Daniel didn't seem interested in the sound of a person's voice. The hearing tests came back normal. Daniel had a more profound communication problem. "He didn't realize people were the center of the universe," says his mother. The pre-schooler was much more interested in the mechanical world, a characteristic of children with autism. "People were less important than a leaf flying in the wind," she remembers.
Mary Barrett recalls how gratified she felt the first time Daniel noticed people on his own. He was 5 years old. They were out for a walk and Mary remembers Daniel called out to an older couple walking across the street. "Daniel gave them attention instead of cars or storm drains ... He wanted their attention. ... That meant a lot to me. He realized that was the important thing in this little moment," she says.
A Whole New Specialty of Medicine
Sixteen years later, when asked what aspects of Daniel's life have been affected by his early life in an institution, Peter Barrett doesn't hesitate. "Everything."
Mary agrees. Daniel suffers from emotional disorders, which his parents and therapists attribute to his early social deprivation and probably his lack of prenatal care. Mary was surprised how unprepared the medical system and the schools were to help children like Daniel.
Adoptive parents turned to each other for support. Groups like The Parent Network for the Post-Institutionalized Child sprang up to help adoptive parents share information on things like attachment disorder, a problem caused by a lack of bonding with a parent or primary caregiver. "I think it's created a whole new sub-specialty of pediatrics," says Mary Barrett.
Dana Johnson, the MD, would be such an example. He started the country's first clinic specializing in children adopted abroad at the University of Minnesota in 1986. At first, he says, the International Adoption Clinic focused on caring for the physical health of the new adoptees and treating diseases such as hepatitis and HIV. But with the arrival of Romanian orphans in the 1990s, the clinic began to handle more emotional and behavioral issues caused by extreme social and sensory deprivation.
"These kids would come very delayed, globally delayed. Motor skills, social skills, language skills," says Johnson. Treating these children was often complicated. For example, Johnson says, he would see children whose parents were concerned about attention problems. The children weren't listening and were misbehaving. "But if you look more carefully, about 10 percent have significant hearing problems," says Johnson, "but if you take care of the hearing, the language comes along and the behavior improves."
Johnson is working with Charles Nelson on the Bucharest Early Intervention Project (B.E.I.P.) to try to pin down the critical windows for various kinds of development to try to better understand how institutional life affects brain development.
The puzzle for researchers is why some children recover so well and others do not. Nelson says there are lots of factors to consider. Genes undoubtedly play a role. The current estimate is that humans have 20,000 genes, of which 70 percent are "brain specific," making it a complicated job to isolate particular genes that govern resiliency. Nelson says environmental factors such as pre-natal care and variations in orphanage care also affect how well children recover.
Romania Faces Pressure over Adoption
The B.E.I.P. has coincided with a rapid period of change inside Romania's child welfare system.
During the 1990s, Romania was a popular country for Americans and Europeans adopting abroad. But reports of baby trafficking and corruption plagued the practice. Hoping to improve its child welfare practices and gain entrance to the European Union in 2007, Romania passed a moratorium on international adoption in 2001. Hundreds of adoptions were suspended. Many of those American families have urged Congress to pass a resolution allowing those adoptions to move forward.
Without the option of sending the children abroad, Romania needed to substantially reform its child protection system. It had begun dismantling its large orphanages in 1997 and that process gained momentum during the early 2000s. There were three options for institutionalized children: reunification with a birth family, moving in with a foster family, or for those children who would be extremely difficult to place, joining a small group home where they could live out their lives.
From Orphanage to Recovery Center
The movement away from large institutions is evident in Bucharest. Take St. Catherine's orphanage which serves one of six sections of the capital city. It used to house a thousand children in its 19th century pavilions. Today, the children are gone. In an overgrown central courtyard, chipped and peeling swing sets hang motionless and a cement wading pool sits empty.
Part of the orphanage has been renovated and turned into a recovery center, providing therapy for its former residents who now live elsewhere.
The old orphanage also houses a maternal center, where women can stay for up to six months with their babies. It's an effort to help mothers who in the past might have had to give up their children to an institution.
Romania is eager to show the many improvements it has made for its children. A small group home shown to Nelson's group in May 2006 was airy and pleasant, with friendly caregivers. A group of 12 children will call this home and live out their lives here.
Earlier this year, Romania was embarrassed when Mental Disability Rights International, a non-profit advocacy organization, published a report and photographs alleging severe mistreatment of handicapped children.
Romanian officials dispute the accuracy of the report, claiming the information was out of date.
At a news conference in Bucharest in May 2006, American ambassador Nicholas Taubman praised Romania's progress, saying, "Sixteen years ago, there were more than 170,000 children in horrific state-run institutions. Today, the number is down to 28,000. But that's 28,000 too many."
Taubman went on to say Romania needs to make it easier to adopt children domestically because children need permanent families. He hinted at U.S. pressure to reopen international adoption. "Simply eliminating one of the options for political reasons is just not fair to the children," he said. "They don't have time for politicians to argue and debate, to decide when it is politically 'right' for those kids to have a family."
The Bucharest Early Intervention Project is gathering evidence that feeds into the debate over what's best for children. Nelson says the Romanian government has used the B.E.I.P.'s data to support the shift from large institutions to foster care. He says with a laugh, "Of course, now when I go there, I spend all my time meeting with politicians." But then he turns serious. "It's been miraculous, the government's change in attitude."