Adopted children greeted by doctors who specialize in their needs
■ Physicians specializing in adoption medicine are experienced at identifying and helping to care for the unique medical, mental and developmental needs of adoptees.
By Carolyne Krupa — Posted Dec. 17, 2012
When Eleanor Rybicki first came to the office of Elaine Schulte, MD, MPH, in August, she was a frail and tiny baby — so small she didn't register on U.S. growth charts for her age group.
Joseph and Kimberly Rybicki, who adopted Eleanor from a Chinese orphanage, were nervous, but Dr. Schulte quickly put their fears to rest.
“Eleanor was malnourished and understimulated, both cognitively and physically,” Kimberly Rybicki said. “She could sit up, but just barely. She was not crawling, and it was clear that she had not spent much time on her stomach. Dr. Schulte was very helpful. Because of the experience she has had seeing these children over the years, she didn't panic.”
Dr. Schulte assured them that Eleanor's condition was common for children who had spent their earliest months in institutions and advised them that the child would improve with proper care, love and stimulation.
As an adoption medicine specialist and medical director of the International Adoption Program at Cleveland Clinic Children's Hospital, Dr. Schulte routinely sees children who come from challenging circumstances. She is one of about 65 physicians in 31 states who focus much of their practices on treating adopted children, according to the American Academy of Pediatrics' Council on Foster Care, Adoption and Kinship Care.
Adoption medicine is not a board-certified specialty. Most pediatricians see at least some adopted patients, but adoption medicine specialists have a specific interest in this patient population. Many have adopted children themselves, and they understand adoptees' needs and focus on helping families meet those needs.
Most adoption medicine physicians are primary care doctors, or they specialize in infectious diseases or developmental-behavioral pediatrics, said Sarah Springer, MD, a general pediatrician with Kids Plus Pediatrics in Pittsburgh and medical director of International Adoption Health Services of Western Pennsylvania.
“It is definitely a focus of interest that is really interesting and fulfilling,” she said. “You get to know some amazing kids and some amazing families. It's really fun to see kids blossom who may not otherwise have had the chance.”
Drawn to treating adoptees
Jane Aronson, DO, has treated adopted children for about 25 years. An infectious diseases specialist, she started getting inquiries from adoptive parents, and those questions increased as international adoptions spiked in the 1980s and 1990s. For many years, she had a primary care adoption practice in New York.
Though inspired by the children she treated, Dr. Aronson found that she also wanted to do something for children who weren't adopted.
“I became aware that there were millions of orphans living in developing countries who weren't getting the care they needed,” she said.
DID YOU KNOW:
More than 100,000 children are adopted in the U.S. each year, including about 22,000 international adoptions.
In 1997, she founded the Worldwide Orphans Foundation with the goal of improving living conditions for orphans around the world and helping them become healthy, independent and productive adults. The foundation has helped orphans in 14 countries and remains active in five.
Being an adoption medicine specialist means focusing not just on the unique medical needs of adopted children, but also on their mental, behavioral and developmental health, said Dr. Aronson, who has two adopted sons from Vietnam and Ethiopia.
“Most pediatricians and family doctors are not aware of the issues of adopted children,” she said.
Dana E. Johnson, MD, PhD, a professor of pediatrics with the divisions of neonatology and global pediatrics at the University of Minnesota Medical School, got into adoption medicine after he and his wife adopted their son from India in 1985. At the time, it was difficult to find anyone specializing in treating adopted children. Many adoption agencies seemed to deny that the children had any special needs, he said.
“When we first posed the idea of an international adoption clinic in 1986, we were told no one needs it, because these kids are doing so well,” Dr. Johnson said.
Orphanages provide a rough start
Children who are institutionalized can have a variety of emotional, developmental or behavioral problems, said Dr. Johnson, who has visited orphanages in Russia, Romania, India, China, Nepal and Kazakhstan. Such children don't receive needed stimulation early in life. They are seldom touched, and that can lead to problems such as trouble with personal contact or balance. The longer children are in an institution, the worse their problems, he said.
“Early institutionalization is catastrophic,” Dr. Johnson said. “What a child really needs is a family as early as possible.”
For many adopted children, the challenges begin before they are born, Dr. Aronson said. They may have birth defects, or are born underweight or premature, because their biological mothers did not get appropriate prenatal care or used drugs or alcohol while they were pregnant.
Many adopted children also come with emotional challenges because of their experiences. Dr. Schulte said many adopted children have attention, learning and behavioral issues. They often struggle with anxiety issues akin to posttraumatic stress disorder.
Because of these children's unique needs, physicians should perform comprehensive evaluations of newly adopted children, according to an American Academy of Pediatrics' clinical report in the January issue of Pediatrics.
“There are so many issues that we as pediatricians may not normally think about,” said Veronnie Faye Jones, MD, PhD, MSPH, the report's author. She is a pediatrics professor and an associate dean for academic affairs at the University of Louisville School of Medicine. “There may be genetic predispositions that you may not know about. A lot of these kids may have unsettling pasts, and there may be a lot of issues that are lingering for them.”
More than 100,000 children are adopted in the U.S. each year, including about 22,000 international adoptions, the report said.
Increasingly complex cases
Dr. Springer said it's important to educate physicians about the needs of adopted patients. She routinely sees children with physical, mental or developmental disabilities, such as complicated heart problems and neurodevelopmental disabilities.
“We work hard to help educate all physicians about what the needs of these kids are, and to help them understand that — while they may look as healthy as all the other kids walking into your office — you need to consider the trauma they may have experienced,” Dr. Springer said.
International adoptions have decreased in recent years as countries like China and Russia have increased restrictions. As a result, more special-needs children are being adopted from abroad, Dr. Springer said. “The numbers of kids are way down, but the complexities of their needs are way up,” she said.
Adopting a healthy child from China can take several years, so the Rybickis adopted a child with special needs. They selected from a list of special needs they thought they could handle. They were matched in March with Eleanor, who was born with a cleft lip and palate, and held her for the first time Aug. 6.
“The nanny walked up and just handed her to us. It was completely surreal,” said Kimberly Rybicki, a registered nurse in the cardiac progressive care unit at Cleveland Clinic. “There is nothing that can prepare you for that experience.”
Eleanor's lip was repaired in China, and she had surgery to fix her palate in mid-November. Dr. Schulte has been a guiding force through it all, Rybicki said. Early on, she ordered several tests to make sure Eleanor didn't have any other health issues and brought her up to date on vaccinations. She also helped the Rybickis find the best way to solve Eleanor's sleep problems as she adjusted to her new environment.
“Dr. Schulte was very, very helpful in helping us know what to do and what to expect,” Rybicki said. “Adoption in and of itself is a special need. You want a primary physician who understands the needs of your child.”
Resilient young patients
Like Eleanor, many of Dr. Schulte's patients are malnourished and understimulated initially. Dr. Schulte became an adoption medicine specialist after adopting two girls — now 15 and 16 — from China in 1997 and 1998. In 2007, she started Cleveland Clinic's International Adoption Program.
Dr. Schulte said it's incredible to watch her patients' resilience as they grow and flourish with their new families.
“One of the greatest pleasures for me to observe as a physician is to see what happens between the first visit and the follow-up visit [four months later],” said Dr. Schulte, also chair of the Dept. of General Pediatrics at Cleveland Clinic Children's Hospital and professor of medicine at Cleveland Clinic Lerner College of Medicine.
Dr. Johnson said the specialty can be rewarding and challenging. In one instance, a family he worked with was preparing to pick up their child in India when the government raided the orphanage. The adoption was delayed, and the child spent more than six months in a government institution. Her growth stagnated as a result, Dr. Johnson said.
When the family finally brought her home, she was put into therapy. Now a teenager, the girl is thriving. She plays the violin and speaks at fundraisers for international adoption.
“She is a star and just a shining example of how resilient children are and how important families are,” Dr. Johnson said. “It is just enormously gratifying to see something like that.”
Dr. Springer, who adopted two children in the U.S., said as many as 75% of her patients are adopted or in foster care. They provide many inspirational moments.
“You see miraculous changes in kids all the time,” Dr. Springer said. “With the right family and the right support, kids can do more than you would ever imagine.”