Adoption Medicine: Healing the Wounds of Troubled Children
During the past decade, a surge in international adoption has lead to the development of a new medical category: adoption medicine. Ten years ago, expertise in international adoption medicine was rare indeed. Clinics developed because a need existed; children adopted from foreign institutions were presenting unique problems.
In some instances, physicians had a personal interest in international adoption. Others became intrigued by the children and the stories their parents were telling. In both cases, dedicated professionals built qualified multidisciplinary teams to unravel the layers of issues facing children adopted from overseas.
In 1998, the Joint Council on International Children's Services compiled a list of the best-known international adoption doctors (see accompanying list). Fourteen sites from Kentucky to Michigan are on this incomplete list. Additional clinics continue to emerge. The longest standing is Dana Johnson's International Adoption Clinic at the University of Minnesota. Dr. Johnson and colleagues have consistently researched and reported on issues specific to children from orphanages. Since 1986, Dr. Johnson and his team have lead humanitarian efforts in Romania and pioneered post-adoption evaluation efforts in the U.S. Why is there a need for special clinics?
Lois Hannon, mother of 12-year-old Juliana, reports seeing 50 to 60 doctors and therapists since bringing her daughter home from Romania in 1991. For most of these professionals, Julianna was the first post-institutionalized child they had seen. Some professionals said wait and see. Others suggested interventions that were standard for the typical children they served. Still others, and these are the professionals we adoptive parents embrace, took a keen interest in the story Lois told. This is not to say that pediatricians with no adoption experience are at fault. Instead, it is important to consider the multiple-layered needs of the post-institutionalized child and the time it takes to work through those layers. A busy pediatrician
practitioner does not have that kind of time to research the wide variety of medical, behavioral and developmental needs of an internationally adopted
child. Thus, the services of an international adoption clinic begin to make good sense.
Dr. Patrick Mason, endocrinologist and medical director of the International Adoption Evaluation Center at Hughes Spalding Children's Hospital in Atlanta, Georgia suggests international adoption medicine is not meant to replace the role of the primary pediatrician in a child's life:
Children adopted internationally have lived under conditions no other children hopefully will have to experience. Pediatricians in the United States are not used to the degree of problems and the combination of problems presented by internationally adopted children. There are potential issues based on early life experiences of the child that a typical pediatrician would not think to look for. It has nothing to do with not being able to handle it. For example, consider parasitic infection, growth issues, behavioral problems, attachment disorder; a child may have all these at once and to a great degree.
Julie Rathbun from the University of Washington Medical Center in Seattle states that every country has unique ways of writing evaluations and providing medical information. In addition, a child coming from China will have medical needs that will look different than the needs of a child from Russia. Medicine in China, Eastern Europe and Russia is archaic in some regions, mediocre at best in others. The more adopted children a practitioner sees, the more sophisticated he or she will become in their diagnoses and treatment recommendations. The Role of Parents in the Medical Triangle
Many new parents spend weeks in their child's birth country with little, if any, medical support. In my case, I trusted the advice of insightful Romanian women and my own rather shaky instinct. For five weeks, I dealt with conjunctivitis, soy allergy, colic and heat rash in my tiny infant, far from home and the convenience of my pediatrician. A positive outcome of my struggles was a sense of empowerment, when insisting our pediatrician run a series of tests that he otherwise would not have considered. At the same time, what I would have given for the support of an international adoption clinic!
Dr. Mason reports that his involvement with a parent lead to the development of his Atlanta adoption clinic:
I got involved because Lois (Hannon) showed up 3 years ago. Juliana was the first internationally adopted child I had seen. Lois told me stories of other families. They (The Parent Network for the Post-Institutionalized Child) invited me to a conference in Chicago where I met Dana (Johnson) and Ron (Federici) and other experts in the field. Then I did some research, I heard rumors my hospital might be interested, and now we've got the International Adoption Evaluation Center at Hughes Spalding Children's Hospital.
Mason emphasizes that the strength of his program is the support of Chief Administrator of Hughes Spalding, Carla Parris. "She has a keen interest and sees the need. It is hard to find a hospital willing to take on a new program in these days of funding difficulties and HMO's." How are Clinics Staffed?
Each adoption clinic may be staffed very differently. In some cases, a physician may work alone or refer families to specialists. Other clinics may have in-house teams. Hughes Spalding Children's Hospital adoption clinic team consists of: a medical director who is an endocrinologist (interested in growth patterns), two trained developmental pediatricians-who conduct development and behavior assessments, an administrative assistant, a social worker with 20 years of adoption experience, and the services of hospital faculty who have set aside time for the clinic as necessary. "We know infectious disease, neurology, and gastroenterology are all important," states Dr. Mason. "We also have a parent liaison, who meets with each family to get issues from the parent's standpoint and keep us on track."
The parents' standpoint needs to be addressed in adoption medicine as in all medicine. Too often parents report frustration in not being heard. As parents, we are the best advocates for our children. "You know more than you think you do," writes Dr. Dana Johnson in reference to parents. "You know a lot about the country from which you are adopting. There is a direct relationship between a nation's economic status and its health care
delivery system." What Services are Provided by an International Adoption Clinic?
The international adoption clinic is not designed to replace one's family doctor or pediatrician. Instead, clinic staff interfaces with the family's physicians. Dr. Mason states:
We use what we know about risks. We can look at videos, medical records and be a resource to the family and pediatricians. Reading medical records from sending countries is no easy task. You have to understand that what is said is not always what it appears and what is not said is also important. The knack for deciphering orphanage
records comes with experience and on site visits to orphanages.
In general, international adoption clinics are utilized before, during and after an adoption. Pre-adoptive services include previewing video clips of children, reviewing existing records and consulting with the family when an initial family-child match is made. While many agencies rush families through this critical, life-changing step, Dr. Dana Johnson reminds parents that they are entitled to a reasonable amount of time to evaluate information on a specific child.
Some clinics also offer assistance while parents are in the birth country. A family may see a child in an orphanage and recognize a serious, unexpected issue. "On several occasions we have received calls from Russia or China," states Dr. Mason, "when parents may be concerned about a particular rash or behavior." Mason has a beeper number to connect with families whenever needed.
Post-adoptively, Dr. Mason sees children either immediately, within a week, or 1 to 2 months after arrival, depending on the child's needs. In the case of an emergency, an immediate hospital rendezvous is arranged. For chronic medical or behavioral issues that present less of an emergency, such as ongoing diarrhea, a child will be seen within one week of arrival.
Most common is a routine follow up, 1 to 2 months after the new family is settled at home. "This gives parents a chance to accumulate information about the behaviors and strengths of their new child," says Dr. Mason, "And the child will be more comfortable in a strange situation after a month or two." During the course of an initial evaluation, laboratory tests specific to a child's birth country are ordered. In addition, assessments appropriate for post-institutionalized children that measure their development are administered. What to Look for in International Adoption Clinics
If you decide to use the services of an international adoption clinic, Dr. Mason recommends asking the following questions:
How long have you been in business?
Are you connected with other experts in the country?
Do you attend international adoption conferences and other exchanges?
Who staffs your clinic and what are their backgrounds?
How many kids have you seen and in what age range?
What services are available(translations, video evaluations, records review, face to face meetings with the family, written reports, one person or multidisciplinary team)?
Can you provide primary care for my child if desirable?
Will you interface with my family physicians?
"It is such an emotional thing to seek help," states Dr. Mason. Fortunately, with the expertise available in clinics across the United States, families now have excellent opportunities before, during, and after their adoptions to make informed decisions and prepare knowledgeably for this chance of a lifetime. There is nothing like adoption. It is a passion for the families it touches. And the good news is, it appears to have touched the hearts of professionals. Just ask Dr. Mason, who defines adoption medicine as "healing the wounds of troubled children."
Dr. Debra Schell-Frank, ED.D, is an educational consultant specializing in issues related to children adopted from institutions.
Note: A list of International Adoption Medical Professionals is also included in the August/September issue of 1999.
© Adoption Today
Credits: Debra Schell-Frank, EdD