When a family recently received the medical records of a child from India that they were considering adopting, they forwarded the file to the Adoption Medicine Clinic at the University of Minnesota. The clinic reviewed the records, which included an echocardiogram — an ultrasound of the child’s heart. The image revealed a congenital defect known as an atrial septal defect, a hole between the top chambers of the heart.
Although the notes described the hole as small and minor, Judith Eckerle, MD, the adoption clinic’s director, consulted with pediatric cardiology colleagues in the health system for clarification. The result: At 5 millimeters, the defect was not classified as small and, because of other issues on the study, was more than likely to require a corrective procedure down the road.
“We discussed the best- and worst-case scenario, and then I could talk to the prospective parents in a very informed way about what to expect,” Eckerle says. “This made the care transition much smoother and allowed them to be emotionally and financially prepared for any surgeries or procedures their child might need.” The adopted child and the family are now doing well, she adds.
Pre-adoption medical reviews are just one component of the work of the clinic, one of the oldest among a number of similar centers embedded at academic health systems around the country. These clinics aim to prepare parents to manage the health challenges of their adoptive children and offer unique expertise and resources to shepherd these children through the often complicated transition to a forever family.
“For a small period of time, we’re extremely important to a family, because this is one of the most important decisions they’re going to make in their lifetimes,” says Nancy Curtis, MD, director of the International Adoption Clinic at the University of California San Francisco’s Benioff Children’s Hospital.
A changing adoption landscape
Every year more than 100,000 children are adopted in the United States, including from foster care or private domestic placements, as well as internationally. Foreign adoptions peaked at around 23,000 in 2004 but have dropped in recent years to less than 1,300 a year, owing to policy changes in several countries, particularly China and Russia. (Today most children adopted internationally come from India and Colombia, data show.)
At the same time, adoptions from the domestic and foster care systems have surged, driven in part by the opioid crisis, says Eckerle.
Regardless of where children are adopted from, medical concerns are common. Almost 40% of adopted children have special health care needs, twice the rate of children in the general population, according to data from the Centers for Disease Control and Prevention.
“If you incorporate the mental health side of things, then 100% of these children have special needs that need consideration,” adds Eckerle.
The children’s medical history can be serious and complex — from growth delays and birth injuries to rare infections, fetal alcohol syndrome, or even a cancer diagnosis — and may account for why a child was placed for adoption.
“These days, the children in international adoptions, in particular, typically have defined special needs or they would have been more likely to have been adopted in their country of origin or cared for by friends or family,” Eckerle says.
“We have seen a lot of cleft lip and cleft palate in these adoptees,” says Elaine Schulte, MD, MPH, medical director of the Adoption Program at Children’s Hospital at Montefiore Einstein in the Bronx, New York, and author of Caring for Your Adopted Child: An Essential Guide for Parents. “They are placed for adoption either because of the stigma associated with congenital abnormalities or the lack of resources to correct them.”
When a family considers adopting a child, adoption medicine centers can equip them with the knowledge they need to accept a referral from an agency and/or manage a child’s health after placement. That often includes evaluation and care from a multidisciplinary team of doctors and other care providers as well as referral to a range of specialists (cardiologists, nephrologists, neurologists) at the greater medical center.
“The things we look for aren’t on a general pediatrician’s radar,” says Mary Staat, MD, MPH, an infectious disease physician and director of the International Adoption Clinic at Cincinnati Children’s Hospital. “They most likely don’t know what to look for. They may not know that you don’t see schistosomiasis [an intestinal parasite] except in someone from Africa and rarely in India. We’re a time-saver for the doctor in the community that a patient will see.”
Pre-adoption services
Some clinics start by working with parents who are just beginning to consider adoption — before they’ve received a referral.
“Sometimes parents are filling out forms from an agency to help guide them to the type of child that would work best for the family,” says Curtis. “I help them narrow the list down to medical needs they feel comfortable with.”
More commonly, prospective parents reach out to adoption medicine clinics after beginning the adoption process. They’ve received a child’s file and need guidance understanding the information.
“The adoption agencies do a much better job of preparing parents than they used to, but they still aren’t medical professionals, so they can’t interpret what they see on medical reports,” says Schulte.
The clinics may notice things that others have missed.
“We might look through the file and say, ‘I know that you were up for cleft lip or cleft palate. But besides that, this particular child has high-risk features for a genetic syndrome that may affect them lifelong,’” says Eckerle. Families can handle a myriad of complicated medical or emotional needs. However, “the biggest problems occur when families encounter something they were not expecting.”
Adoption medicine experts say they’re not there to tell parents whether to adopt, but to help them understand what would be involved in taking care of a child with specific needs. They also help parents think through their resources, such as health insurance and support systems, as well as access to health care facilities.
“We might see a family that lives in the middle of Indiana, and it’s really far to get health care, or they have a particular kind of insurance that would make it a financial hardship to adopt a child” with complex medical needs, says Staat.
Assessing adoptees’ mental health needs
Children’s emotional issues can be as challenging as the medical ones, experts say, and parents need to examine their capacity to handle them, Staat says.
Adopted children may have had significant traumas, a result of adverse childhood circumstances, including physical, sexual, or mental abuse or neglect, or exposure to alcohol and illicit drugs, which is more common among children in the foster care system. Those experiences can lead to anxiety, anger, and other challenging emotions they will need help learning to regulate.
Whether the adoption is international or domestic, the pregnancies may have been difficult, Eckerle adds.
“The parents maybe knew that they weren’t going to be able to care for them, or there was homelessness or food insecurity,” she says. “Some of these children were bathed in cortisol [the stress hormone]. Their bodies may be primed for fight-or-flight.”
That can lead to an elevated risk of neurodevelopmental challenges such as learning and behavior concerns or attention issues, which need to be correctly diagnosed and addressed as early as possible in order for the child to do well later in life.
Adoption clinic doctors can also tell prospective parents what the risks are likely to be with certain maternal and perinatal exposures.
For instance, “some parents are really scared because the biological mom was using heroin and opioids during pregnancy,” says Eckerle. “We’re able to tell them that in long-term studies, the kids exposed to these substances were indistinguishable from kids who were not exposed.”
Parents learn that the greater concerns can be the effects of a mother’s use of alcohol and methamphetamines on a developing fetus. These exposures can lead to learning challenges.
“Their general IQ or learning potential can be in the normal range, but the children struggle with concepts like cause and effect, abstract reasoning, and executive functioning,” Eckerle says. “It can really impact them long term if we don’t recognize it and treat it.”
Post-adoption care
After a child is placed in a home, the family typically has a clinic appointment within the first week or two, prior to seeing a pediatrician in the community. The children receive tests, get any needed vaccinations, and may meet individually with doctors, nurses, occupational and physical therapists, and mental health counselors to get a baseline of the child’s health status and devise a game plan for any care that is needed.
“Families usually only get 20 minutes with a pediatrician, maybe 30 minutes for a new visit,” says Staat. “We’re spending three or four hours with them.”
Clinic staff will also look for developmental delays and assess how likely the child is to catch up or need additional follow-up, says Eckerle.
Older children adopted from the foster care system who may not have had consistent health care get the chance to have any acute or chronic conditions evaluated and addressed.
“Kids in foster care might have bounced around for five years or been in seven different foster homes, and maybe they were referred to a pediatric kidney specialist at some point, but then they never got there because they went to a new home,” says Eckerle. “Our job is to make sure that they have the specialists and the care that they need and nothing falls through the cracks.” At some clinics, that includes dental care, which can be hard to access with the insurance that is common among kids in foster care.
Parents leave the clinic with strategies to help their child make as smooth a transition as possible. They may have appointments with medical specialists or follow-up visits with various therapists scheduled.
“When you work in a large freestanding children’s hospital, you have access to all kinds of specialists and ancillary health professionals,” says Schulte.
In her case, Schulte often continues to see the children as their pediatrician.
“I’ve seen children well into their 20s,” she says. “Sometimes they don’t come until they’re teens either because they’re new to the area, or they didn’t start having issues until they were teenagers and the parents are wondering, ‘Is this adoption-related or something else?’”
Clinics typically prepare detailed notes for the family’s regular doctor or practice.
“I make a road map for the child’s general pediatrician or primary care doctor, and I’m specific about what to do,” says Curtis. “There’s also a summary of what happened to the kids so [the doctors] can hit the ground running. The pediatricians really appreciate having some guidance.”
Having formed deep connections to the adoption medicine clinic staff, some adoptees stay in touch for years. That’s part of what makes the work deeply rewarding, adoption medicine doctors say.
“Everybody is very passionate about caring for these families, and the families are great,” says Staat. “It’s such a joy to be a part of their lives and this journey that they’re taking.”
Adds Eckerle, “This work can completely change the trajectory for these children and these families. I’m always amazed at how much progress the kids can make once we clear the path for them and get them into a loving, stable environment.”
