• Article
  • April 27, 2018

Adoption Medicine Services in Children's Hospitals

Adoption comes with its share of challenges—from medical and social conditions to developmental and psychological issues. Enter adoption medicine—a pediatric field where the specialists often have a strong personal connection to adoption and a clear mission to make a difference.

Spring 2018 cover

By Megan McDonnell Busenbark

Judith Eckerle has built a life around paying it forward. Abandoned shortly after her birth in South Korea, she was soon adopted by a Minnesota family. Today, she is an adoption medicine physician and director of the Adoption Medicine Clinic at University of Minnesota Masonic Children's Hospital in Minneapolis. This is where Eckerle now helps families who are adopting children, whether internationally, domestically or from foster care.

"This is so personal to me," says Eckerle, M.D., associate professor, division of global pediatrics at the University of Minnesota Medical School. "I feel things very deeply for the families and the kids."

These families and kids come to clinics like Eckerle's for care and cure through adoption medicine, which includes pre-adoption counseling and evaluation of the child, counsel during travel to the country from which the child is being adopted and post-adoption care and consultations. This field of adoption medicine began to emerge toward the end of the 20th century, when it became clear that children who were born abroad and adopted in North America often faced medical problems, but there were no specialists to help.

When the clinic at University of Minnesota Masonic Children's Hospital opened in 1986, it was the first one of its kind in the United States. Over the years, the clinic has provided more than 30,000 pre-adoption reviews for children in 40-plus countries. Today, a handful of children's hospitals offer this care. Here's a look at how these programs are helping  adoptees and their families from infancy to adulthood.

A resource for parents

When Eckerle was adopted in 1977, her parents didn't receive any information about her. But times have changed. Now, families have a lot of information to sift through and decipher as they are making decisions about adopting. For example, Eckerle says adoption agencies give adopting parents "giant checklists" of medical conditions an adoptee could have and ask them which ones they feel they could handle. One list, Eckerle recalls, had 117 different conditions.

Top 5 sending countries in 2016

In 2016, U.S. citizens adopted 5,372 children from other countries. That number has been ticking down every year since international adoptions in the U.S. peaked at 22,884 in 2004. This is a 76 percent drop over 12 years. Changes in laws, process and funding are a driver for the decrease.

  1. China
  2. Democratic Republic of Congo
  3. Ukraine
  4. South Korea
  5. Bulgaria

"There's just no way to Google that," she says. "One part of my job is to go through and help parents pare down what their expectations are and what they really feel they could be open to in terms of medical and emotional needs for a child."

Since Eckerle began her career in adoption medicine a decade ago, she has seen a significant increase in adoptees with medical needs. "When I started this work, I would say half the kids we saw were fairly healthy," says Eckerle. "We always consider adoption to be a type of special need because they've had transitions—and sometimes loss of birth home, country and family. So there's trauma involved. But these days, almost 100 percent of these children have some sort of medical special need."

These needs range widely. It could mean the child is missing fingers or needs a bone marrow transplant. It could mean fetal alcohol syndrome or cleft lip and cleft palate. Or it could mean a condition so grave that the child will never live independently, or live a full life span.

This rise in the number of international adoptees with medical issues can be attributed, at least in part, to an increase in the number of in-country adoptions where healthy children are adopted first, Eckerle says, leaving children with medical issues and special needs available for adoption overseas.

Changing to meet changing needs

Over the years, the number of international adoptions has dropped for reasons ranging from country politics and adoption processes to child trafficking concerns. As these numbers fell, many adoption medicine clinics closed. Eckerle and her team began seeing patients and families from as far away as Washington, D.C., Los Angeles, and even Ireland.

But with this drop in international adoptions came a rise in domestic adoptees and foster children, and Eckerle seized the opportunity to help. She and her team expanded their work with families on domestic and foster-care adoptions, and she changed the University of Minnesota clinic's name from the International Adoption Clinic to the Adoption Medicine Clinic in light of the shift. These domestic adoptees and foster kids—children who face many of the same issues as international adoptees—now constitute about half of Eckerle's caseload.

"It's an incredibly underserved population," says Eckerle, who adds that many in this population are on medical assistance, and reimbursement is "disastrously low," creating a challenge for clinics that serve them. "We have fundraisers every year, because we lose money on every patient we see," Eckerle says.

In addition to fundraising, as well as reimbursements and out-of-pocket payments from families on some services, Eckerle and her team are in talks with the state of Minnesota about ways they can work together to help this population of children and families. "We are excited about the future," she says. "But right now, one of our biggest issues is trying to figure out how to stay alive, so we can continue to see these kids."

The first call

The Waller family, from left: Joseph, Brooke, Teddy, Henry, Doug and Rose
The Waller family, from left: Joseph, Brooke, Teddy, Henry, Doug and Rose

Brooke Waller and her husband, Doug, discussed the possibility of adoption on their first date. Then in Uganda, on their five-year wedding anniversary, she said they both had the same feeling: "I think we have kids here in Africa," Waller recalls.

And they did. In the years following, Brooke and Doug adopted Henry, Teddy, Joseph and Rose from Africa—four kids who are now all under the age of seven. All along the way, the family had the help of the International Adoption Center (IAC) at Cincinnati Children's Hospital Medical Center. "When you're adding to your family, everything is overwhelming," says Waller. "And this center is one spot where my husband and I can say … this runs smoothly."

The Wallers worked with the team at the IAC pre-adoption—including helping them prepare for their travel to Africa to bring their children to the United States—and post-adoption, with evaluations of the kids once home. There was one day in particular, Waller remembers, that made all the difference in the world.

When they got custody of Joseph, they learned he had sickle cell anemia. Test results showed he was in danger of a medical crisis or even death. The Wallers were with Joseph in Uganda, trying to figure out what this meant. Their first call was to Mary Allen Staat, M.D., M.P.H., director of the IAC at Cincinnati Children's, to ask what this meant for their family.

"We had this moment in our hotel room where we felt incredibly helpless with this child sitting in front of us in Uganda and we could see he was not well," says Waller. "We were totally ill-equipped to do anything in that moment, but Dr. Staat made us feel like we could get through it. It felt very dark, and she was offering light at the end of the tunnel."

Staat comes by it honestly—she had walked in Waller's shoes. Staat adopted her three kids: George from El Salvador, now 27; Emily from Colombia, now 24; and Katie from Ecuador, now 22. Emily had been very sick with a heart defect as a baby, and when Staat and her husband were in Colombia with her, they were concerned.

Being a doctor, Staat was able to call a colleague back in the U.S. for advice. Here was this little girl who was "starved and scared to death and sick," says Staat, professor, UC department of pediatrics and member of the Division of Infectious Diseases at Cincinnati Children's.

"And we questioned if this was the right decision for our family. I remember feeling blessed I had someone I could call. If I didn't have that, I don't know what the story might have been. So I became very passionate about making sure other families had that too."

Understanding complex health issues

The IAC opened in November 1999 with what Staat calls minimal care. Over the years, the center offered a more comprehensive program, including mental health services. The team includes three therapists, a psychologist and a psychiatrist to help families throughout their lifetime with the developmental, cognitive, social and mental health issues for which these children are at risk.

The IAC has helped thousands of children who have primarily emigrated from China, Ethiopia, Bulgaria, Ukraine, Haiti and India—all who bring with them unique and often complex health, medical, developmental and psychological issues, according to Staat.

In one example, Staat says some babies with heart defects come from countries where they haven't been able to have the heart surgeries they needed. These children with uncorrected heart conditions are more complex to manage when they get older. "Most of these unrepaired cardiac issues represent a whole new little field for our institution and other institutions around the best way to manage them," she says.

Helping into adulthood

Staat and her team continue to build the program. One area they are looking at now: helping adopted children who have challenges with planning, organizing and starting tasks transition into adulthood. Many internationally adopted children suffer brain issues, due in large part to chronic malnutrition or fetal alcohol syndrome, Staat says.

These kids can have planning or social challenges that make it difficult for them to be independent as an adult. It can be hard for them to hold down a job or even communicate. So the IAC is working to get ahead of it.

"We keep learning from our kids as to what the next thing is that needs to happen, to help make sure they are taken care of and that they are productive, successful members of society," says Staat.

Solving the puzzle

The Featherstones: Mark, Peggy, Maggie, Thomas, Mark, John, Anna, Danny, Keriann, Andrew and Emma
The Featherstones: Mark, Peggy, Maggie, Thomas, Mark, John, Anna, Danny, Keriann, Andrew and Emma

Peggy Featherstone and her husband, Mark, adopted five children from China. Add that to their four biological children, and today, they have nine kids between the ages of 12 and 23. For each adoption, they leaned on the International Adoption Health Program at Children's Hospital of Philadelphia (CHOP). When they adopted their first child, Anna, about 16 years ago, the team at CHOP did research and provided tips on adopting a 1-year-old. Since then, the program has offered so much more, according to Featherstone.

Four of the Featherstone's adopted children have cleft lip and palate. So the program referred them to the cleft palate team at CHOP, which would arrange to take care of all their needs—from plastic surgery and orthodontics to speech, hearing and dental, to testing for developmental delays and emotional support.

"The medical complexity of children adopted internationally, especially from China, has increased dramatically in recent years," says Susan Friedman, M.D., attending physician and director of the International Adoption Health Program.

"These children often need multiple specialist evaluations and care coordination. We are the gateway to the wide range of medical expertise at CHOP, providing care coordination and ensuring they see the specialists they need. When a child comes home and has a multidisciplinary medical issue, we make sure everything is connected."

Featherstone is grateful for all the ways Friedman and her team have helped her and her family throughout the process. From navigating mounds of paperwork from an adoption agency to videos, pictures—and even psychological tests written in Chinese.

"She puts it together like a big puzzle and figures out what is missing and what you should ask more information on," Featherstone says.

"She can see things others can't. She can look at things and say, ‘This doesn't seem normal, this doesn't fit, this head circumference doesn't match what it should be according to the weight.' She knows what to flag and what is just normal adjustment for the adopted child."

What it means to have a family

When the Featherstones adopted their son Andrew, now 10, they were at CHOP for an evaluation. Andrew had been home a month. Communicating through the interpreter, Peggy told Andrew they were so happy to have him as their son. Andrew's eyes grew wide. Then he spoke, and the interpreter's eyes filled with tears.

"Through the interpreter, Andrew said, ‘Does that mean she considers me her son?,'" Peggy recalls. "It was a breakthrough for him. These children have been in institutions for a long time, and they don't know what a parent is, what a family is."

Beyond medicine

Understanding the emotional part of adoption—for the adoptee, the parents and the other children in the family—is critical. When older children are involved, that can be an even bigger challenge, as siblings adjust to the changes. Friedman says the team's goal is to help families see everything through the child's eyes. She is sure to keep things real when trying to help families understand what these little adoptees may be going through.

"Let's imagine that someone just plucked you out of your home, out of everything you've known, changed your language, your foods," she says. "Everything smells different. People look different. Everything has changed, and you have no idea why."

As for Featherstone, the team at CHOP makes her and her family feel, in a word, safe.

"I feel like there's someone out there who knows and understands what my husband and I, and their siblings, are going through, as well as the adopted child," she says. "It's a unique type of parenting. And they know that."

A place to turn

Karen Belcher and her daughter Julia
Karen Belcher and her daughter Julia

Karen Belcher has been a pediatric nurse in Birmingham for nearly 30 years. Today, she is the clinical program coordinator/pediatric nurse clinician with Children's of Alabama's International Adoption Clinic. She began working with the clinic in 2012, and she is also an adoptive parent. In fact, every member of the adoption clinic team, which serves families from more than 20 states and other countries, has worked in orphanages, adoption agencies or are adoptive parents.

Belcher adopted a 7-month-old girl as a single parent in 2006. Her daughter, Julia, is from Guatemala and is now 12. At the time of the adoption, Julia was healthy and had no other issues. At least, not yet. Things began to turn when Julia entered school. "I started noticing something was different with her," says Belcher, RN, CPN.

"She was clearly bright and very smart, yet she seemed to be struggling to learn some things and was getting frustrated. I later came to find that she has dyslexia. She has a specific learning difference."

Still, Belcher struggled with where to turn for help. "It didn't occur to me that it had anything to do with adoption," she says. This is a common misperception. Even in a short time, young international adoptees have already faced a lot of adversity. Starting in utero, they often are exposed to maternal malnutrition, stress and a lack of prenatal care. With that comes increased risk.

"We know that a fetus can hear sounds and can smell and have some taste," Belcher says.

"If that mother was in an extraordinarily stressful condition, her own cortisol level would be very high. So the baby, whose brain is developing, is basically taking a bath in cortisol all the time. It's not good for the brain to develop under those conditions."

After birth, these babies continue on a challenging path that can result in a wide range of conditions later on in life. "We have to look at how many times their lives were disrupted," says Belcher. "After they're born, some of them move into a foster home or orphanage immediately. That's a disruption from everything they have ever known—from everything they have ever smelled, heard, seen or experienced. And that alone can scramble their neuropathways a bit."

These children are at a much higher risk for developing things like learning differences that can impact their lives over time. "They may struggle with something as simple as learning to tell time, learning to count money, learning to tie their shoes—things that involve neuropathways connecting in a certain way," Belcher says. "They might struggle socially or academically. Sometimes they need guidance on how to play with other children."

Help for Julia

Tests revealed that Julia was profoundly affected by dyslexia. Belcher found a school that focuses on helping children with learning differences, and today, Julia is not only getting the support she needs but is also thriving academically. Belcher looks back on it all with 20/20 vision. "If I had that to do all over again, I would have come to the adoption clinic earlier," she says. "I would have better understood what to watch for early on and tapped into the learning difference resources that the clinic offers sooner."

One other thing that Belcher is crystal clear on: adoption medicine is an underrepresented area of pediatric medicine. "It absolutely is," she says.

Megan McDonnell Busenbark is a writer and founder and principal of Encore Communications LLC, in New Fairfield, Connecticut. Send questions or comments to magazine@childrenshospitals.org.