Statistics: Special Needs of Special Focus Children in China Age 0-5

International adoption is an ever-changing world; some changes happen quickly, even overnight, and others are slow, gradual shifts over years as culture and societal systems change in sending countries. In China, we have seen a steady progression in the past several years, where fewer young children with needs adoptive families typically consider “minor” are listed for international adoption, especially girls. This shift is happening for wonderful reasons, because children are more often able to stay with their biological families, and more families in China adopting domestically are open to considering special needs. Additionally, in December 2019 the Chinese adoption authority, the CCCWA, made a change to the method for matching children designated “dossier only” or “LID.” These are the children who are typically younger and have needs many families consider minor. Under the new system families may wait years to be matched with a child designated “LID,” so we are encouraging all families considering the China program to be open to the type of needs seen in “Special Focus” children. “Special Focus” children are the children the CCCWA considers harder to place for adoption, due to their age, special needs, or both.

We wanted to get an accurate picture of the children who are in need of international adoption in China currently, so we looked at the last twelve groups of newly prepared Special Focus children’s files, from February 2019 to July 2020. For this first set of statistics, we focused on younger children (listed for adoption before their sixth birthday), since these children are typically matched directly with waiting families, so it’s harder to get a sense of the what the most common special needs are by looking only at waiting children. Most children over six wait for a family, and if you are interested in adopting an older child we are happy to talk with you about the many waiting children!

We counted each child by their primary diagnosis, and did not list other special needs that are typically a direct result of that primary diagnosis (ie. a child listed with a brain abnormality diagnosis who also has an epilepsy diagnosis was only counted in the total for brain differences, since epilepsy is often a secondary diagnosis caused by their brain abnormality, a child diagnosed with spina bifida and hydrocephalus was only listed under spina bifida, etc). We did not note secondary diagnoses that are typically considered very minor, including hernia, undescended testicle, heart murmur, strabismus, etc. If a child had two apparently unrelated significant diagnoses, we counted both, but only counted the child once in the total number for their age/gender group. Since many of these children were matched directly to a family, we are not able to view the details of their files, and can only categorize as best we can given the basic information on the list of files from the CCCWA. Some additional notes about some of these special needs categories are below.

Down syndrome: Many of the children with Down syndrome had additional diagnoses, including heart defects, gastrointestinal issues, etc. We did not count any of these diagnoses in the other totals.

Heart defects: The majority of these children were only listed with the generic description “congenital heart defect,” so specific diagnoses were mostly unknown. That said, special focus children typically have more complex heart defects, including tetralogy of fallot, pulmonary atresia, complex dextrocardia, double outlet right ventricle, transposition of the great arteries, and single ventricle.

Gastrointestinal: This includes anal atresia/imperforate anus, jejunal atresia, intestinal atresia, necrotizing enteritis, pyloric stenosis, etc.

Developmental delay: We only counted children who did not have another significant diagnosis besides some type of developmental delay (motor, speech, cognitive, psychomotor, etc). Many children with other diagnoses also had secondary diagnoses of developmental delay of some type, these children were not counted in this category.

Brain Differences: This included a wide variety of diagnoses, including agenesis of corpus callosum, arachnoid cysts, widened septum pellucidum, cerebral dysplasia, enlarged ventricles, hypoxic ischemic encephalopathy, etc.

Urogenital: This includes hypospadias, ambiguous genitalia, micropenis, congenital adrenal hyperplasia, bladder extrophy, etc.

Cleft lip/palate plus 2nd need: While most children who are only diagnosed with cleft lip and palate are designated LID/”dossier only,” there were many Special Focus children who had cleft lip and/or palate along with one or more other diagnoses, so it’s still a need parents should research and consider. Many of the children had needs commonly associated with cleft lip/palate, such as hearing loss or speech delays, others had different birth defects, such as a heart defect or microtia, that could indicate an underlying genetic cause.

Limb Differences: Many children were only listed as “limb differences” so the specific diagnosis is unknown, others included one leg being shorter, missing fingers and toes, and hand deformity.

Partial Vision Impairment: includes glaucoma, cataracts, ptosis, and loss of vision in one eye. Some of these children may be fully blind, it’s unknown without seeing their full files.

Other: Each of these children was the only child with their diagnosis, includes diabetes, widened button hole/low nose root, teratoma, neurocutaneous syndrome, leukemia, spinal muscular atrophy, myocardial enzyme, skull malformation, and Rett syndrome.

Liver: Most of these children had biliary atresia or similar diagnoses, one child diagnosed with hepatocele

Skin: Includes nevus, epidermis bullosa, eczema, ichthyosis, and scars.

Esophageal/Trach: Most of these children had esophageal atresia

Orthopedic: Includes scoliosis, missing ribs, and hip dysplasia

Kidney: Includes hydronephrosis, missing or malformed kidney