Our Stories :: Lili's Story - Hale & Hardy Chinese Orphans

As an adoption medicine specialist, I have had the opportunity to evaluate children from all over the world. Over 14, 000 children from abroad were adopted by Americans in 1997. Almost 4,000 of these children were adopted from China. The children from China are hardy little gals. They have an inner strength that is hard to quantify, but it is clearly identifiable from the minute you meet them. Ask their parents and you will hear the stories of how they looked when they were first placed in their parents' arms until the time when they were brought home to the U.S. The transition is a miracle! This transition is remarkable and it is the subject of my essay today.

Having been in China with six families in December 1996, I can attest personally to the daily miracles of the developmental blossoming of Chinese orphans. The easiest way to understand what a family may experience when a newly adopted baby girl from China is first adopted is by telling the story of a 9 month old girl named Lili. Though I have changed the name of this child to protect her privacy, her story reflects that of many.

Her family took her in their arms on a Sunday evening 24 hours after they had arrived in China. She had traveled with 8 other little girls and three orphanage workers through the countryside of Anhui province in a tiny van leaking of gasoline fumes for over 8 hours. The orphanage was in the rural town of Tong-ling and the parents waited in Hefei, an industrial city of 1 million. It was mid-winter and the air was cold, damp, and heavy with coal burning dust. The babies had not been fed during the trip, but at least their many layers of colorful clothes had kept them warm. Their little red, chafed cheeks were the only tip off that they had been exposed to the cold winter air.

One by one the babies were brought into the hotel lobby and the parents circulated tentatively amongst the orphanage workers looking for their daughters. Lili's father, Jack knew her immediately from the tiny picture he had carried with him for the last six weeks and he pointed to her saying "That one's mine"! Jack pried Lili free from her caretaker and he pulled her close to his chest. He could not feel her body because of all the layers, but he could imagine what she would feel like. Lili's mom, Sue, came close to father and daughter and pressed her lips gently on Lili's now dry, fiery red, eczematous cheeks. Her hair was glued wet to her shiny brow and she obviously had a bad cold. Mucous oozed from her tiny nostrils and she was coughing in a ricochet pattern. Though her cheeks appeared plump, her tiny facial features occupied only a small part of her face. Her forehead appeared to take up her entire face and her hairline was that of a balding middle-aged man. It looked like her head had been partially shaven. Her eyes were fixated on her fingers. She did not look at Jack or Sue at all. She moved her tiny hands like fans close to her face staring at the fingers and moving them in a rhythmic fashion over and over again. The fingers were so close to her face that both parents thought that she might be have difficulty seeing.

Within minutes, all of the babies were distributed to their respective parents and they all went to their hotel rooms to get acquainted with their new daughters. Jack and Sue took Lili upstairs and they immediately undressed her and laid her on their bed. She was so tiny that they were shocked. Her legs were spindly and her ribs could be seen moving as she breathed. Her buttocks were wasted. She thrashed her head from side to side rapidly and she continued to stare at her hands. She never once looked at her parents. Her belly appeared huge compared to the rest of her. The stomach extended beyond her emaciated body and it was so distended that it made her pigmented belly button stick up about a half inch. Jack used a wet washcloth and some soap to clean her skin. He cleaned her crusty, mucousy nose and he removed some residual stool from her genital area. She tolerated the sponge bath with continued head thrashing and intense hand inspections.

Both parents stared at her for at least two hours. They packed her old clothes in a special bag to bring home so that they could save them as a part of Lili's life story for her to appreciate at a later time in her life. They dressed her in Baby Gap togs and she began to look like a presentable baby. She actually made a funny expression when they put her first diaper on. She had afterall spent her life in split pants which is the custom in China. The taping of the fitted plastic diaper had caused her to wince. She seemed uncomfortable and she began to thrash her head from side to side again. This behavior was easily precipitated by any change or unpleasant stimulus for Lili.

Jack and Sue were notified that they needed to come downstairs to the hotel lobby for the adoption process at another hotel. They quickly prepared a bottle of warm formula and grabbed Lili. She refused the bottle. By now she probably hadn't been fed for half a day. She arched her back and turned her head away from the nipple. Her face was completely without any emotion. She fell asleep on the way to the hotel and slept though the entire adoption process. When the officials told the parents "These baby girls are yours now", Jack and Sue felt alone and frightened. They did not feel like parents. The other babies were screaming, feeding, and one child had even smiled once according to her parents. The foster baby in the group seemed to be the most unhappy. She cried for hours, but her parents had been forewarned that babies in foster care need a few days to adjust. Jack and Sue began to get anxious. Lili was not like the rest.

Lili returned to the hotel with her parents and by the 8th hour that she had been presented to her parents, she still hadn't wet her diaper and she appeared listless. They were able to feed her a few ounces of hot formula by a medicine dropper. The facilitator informed the parents that the babies like their formula hot and sweet so Lili's formula was prepared again using boiling hot water from a hotel thermos and they added a few packets of sugar from the hotel coffee shop. She wet her diaper finally and then she was put to sleep on her parents' bed. They just stared at her as she slept. She lay on her back moving her head from side to side staring at her hands. She finally closed her eyes, but she never looked at her mother or father.

Jack and Sue were sad and frightened. They sat glumly in their hotel room exhausted and anxious. It was now 14 hours since their daughter had been placed in their arms and she was still not truly theirs. They talked about how tiny she was; they couldn't understand the staring and the thrashing. They were sad because she seemed so unhappy. They wondered when she would look at them and really be their little girl, Lili. They decided to speak to the facilitator and express their concerns. Jack went to Xiao Cho's room and sat with her for about 15 minutes reviewing his concerns. Xiao Cho tried to explain to Jack that some of the babies take a bit of time to acclimate to their new surroundings, and she assured him that Lili would come around. He went back to his room and sat with his wife. She was sitting in an armchair leaning over the bed, chin in her hands, just staring at Lili.

Jack related Xiao Cho's thoughts, but both parents were not comforted. Suddenly, Lili awakened and she was crying for the first time. She could not be consoled. They changed a slightly damp diaper and they tried to feed her, but nothing worked. They played traditional Chinese lullabies and that seemed to cause the crying to escalate. She felt warm so they took her temperature and it was close to 102 degrees. Finally, they put her in the stroller and walked her back and forth in the hallway. She thrashed her head for a while and even arched her back until finally she put herself to sleep. Both parents felt helpless and lost. They decided to call me. They had heard from a friend that there was a doctor in New York who you could call if you had medical questions when you were getting your baby in China. It was 2 a.m. in the morning in China so they figured it was 2 p.m. the day before in New York. They rifled through their files and found my phone numbers. The front desk receptionist called me out from an examination of a newly adopted Russian baby girl. I stood at the front desk phone because I am always afraid of losing a long distance phone call from China. I sat down as I listened to Sue tell me about her daughter, Lili. This was like many calls that I get each month from China.

I asked many questions about the baby's health and concluded that like many orphans in China, Lili had an upper respiratory infection, probably bronchitis, perhaps even bronchiolitis, but I was not too concerned. She did have a fever, but she was not short of breath. I was concerned about the poor feeding and the dry diapers so I gave the mother very simple instructions about frequent small feeds and I reinforced the need for a hot, sweet bottle. The head thrashing and the finger fixation is so common in newly adopted Chinese girls. Their fingers are their toys! They have not found their voice, so head thrashing is a self-calming and self-stimulation behavior. An expressionless face had convinced the parents that she was neurologically impaired. I countered with the possibility that Lili was defending herself from a very new experience. She was hiding inside of herself assessing her new surroundings. She was protecting herself from possible danger. She was afterall a survivor. This is what had gotten her this far. She also was sick and uncomfortable physically. The shaved head was clear evidence for me that her orphanage workers had treated her with intravenous medicines in the orphanage. I instructed the parents to concentrate on helping Lili gain strength from nutrition. Strength from food would surely help Lili feel less defended.

After about a half hour, I spoke with Jack and reviewed most of what I had discussed with Sue. I asked them to call me in 12 hours so that we could reassess Lili's progress. I tried to support their ability to parent Lili. They were insecure and convinced that they could not help her. I spent a lot of time convincing them that they had good common sense and that with patience, they would get to know their daughter and that only they would know what she needed and when she needed it. They asked me about why she was so listless. Malnutrition can cause a child to appear listless. Lili was also sick. As it turns out, her father had noticed that there was some fluid draining out of her left ear. She probably had a perforated ear drum from an ear infection. She could have been in a lot of pain with the infection and this could have also have precipitated the head thrashing. They had brought some amoxicillin along and we got her started on this. I also instructed them to give her tylenol for the fever and possible ear pain.

They had described how she just hung on their laps when they changed her. This floppiness is consistent with rickets. Most of the girls from orphanages in China have rickets. Because of lack of vitamin D and poor nutrition, their bones and muscles become weak. With good nutrition they can overcome this condition. I did not appreciate any symptoms consistent with any serious underlying neurologic condition, but obviously by phone I could not be sure of anything. I had experienced the transition behavior of newly adopted Chinese babies in December 1996 when I accompanied six families to China and I knew what this transition looked like. I also have seen this transition play itself out many times before through phone conversations just like this one and by the stories of hundreds of parents who bring their children home from China for me to examine and care for in my office.

Lili was actually quite typical as a newly adopted baby girl from China. She had malnutrition, rickets, bronchiolitis, an ear infection and she was defended and depressed. Her parents called me 18 hours later with a good progress report. She was taking more formula and she was not arching her back everytime that her diaper was changed. She was still thrashing her head, but it actually seemed to be lessening. She actually grabbed a plastic key ring and she was staring at her fingers less. Still no smile and still no connection with her parents. They called me 3 days later and she had smiled about an hour before they phoned me. She was no longer staring and looking through them. Jack was convinced that she had looked him straight in the eye when he fed her a few hours before. She was actually enjoying her baths and slapping the water in the tub. On the 10th day they called from the White Swan Hotel in Guangzhou. She was taking 6-8 ounces of hot formula at a time and she was smiling regularly. She was sleeping through the night and taking one nap a day. Her cough was better and her left ear wasn't draining anymore. The fever had broken after two days of antibiotics. They had not seen her arch her back for days; they couldn't remember when it had stopped. She still thrashed her head from side to side especially when she appeared frustrated and certainly just before going off to sleep. They went home on the 14th day of the trip and I called them the day after they arrived home. They were elated to be home and Lili had smiled endlessly at the airport when she met both sets of grandparents.

I just saw Lili in my office a few weeks ago after being home for a week. Her lungs were clear and her left ear drum had healed well. She had gained half a pound since her adoption two weeks before. She had possibly grown a quarter inch and her parents said that the two bottom teeth had magically appeared on the 12th day in China. The back of her head was bald and flat, but her head circumference was on the 5th% on an American growth curve! Her height and weight were below the 5th% however even on a Chinese growth curve. She was a tiny peanut, but her physical exam was remarkably normal. She had bowing of her lower legs and a very prominent forehead consistent with rickets. Her blood work showed that she had rickets and her knee x-rays had a raggedy appearance consistent with rickets as well. She will take high dose vitamin D for a few months and this will treat her rickets. Her blood work also showed iron deficiency anemia for which she will take iron daily for a month. About 25% of children adopted from China have anemia. In fact this is a health problem for Chinese children in general. Her lead was slightly elevated. About 10% of children adopted from China have elevated lead levels, but this tends to disappear with time. She also had a parasite in her stool called Giardia. This probably explained her huge, distended belly and likely accounted for her failure to thrive due to chronic malabsorption of nutrients. She was treated with a medicine for ten days and within a few days of taking the medicine her belly seemed to stick out less and she was gaining weight rapidly.

Her developmental exam showed marked delays for gross motor, fine motor-adaptive, and language skills. Across the board she was developmentally six months. She couldn't sit on her own and she was raking a raisin, but she was socially on target for a 9 month old infant girl. She was making vowel sounds and occasionally she would do some loud raspberries. Jack and Sue were pleased and satisfied with Lili's amazing progress. They felt confident with their parenting abilities. They had been part of an amazing transition process. They could see her progress from day to day and they were comfortable now. I referred Lili for early intervention services through the health department in her town. These services are provided free through grants from the federal government. She will be evaluated by speech, physical, and occupational therapists in her home and then a program will be prescribed so that she can get her therapies in her home on a weekly basis.

What I have related to you is quite typical of children adopted from orphanages in China. Obviously some children are more delayed than others. Some children do not have bronchitis and ear infections. Some children are almost on target developmentally, but the vast majority of orphans have transitional delays which may take a number of months to wane. About a third of the children I evaluate in my office need early intervention services beyond just the first few months of transition. Most of the kids who require long-term early intervention services need speech therapy. They have not acquired their own language in the orphanage. The gross motor, fine motor- adaptive, and personal-social skills progress rapidly with good nutrition, stimulating environments, and short term therapy programs.

Chinese orphans are hardy little survivors. They have magical inherent survival skills that allow them to fight adverse conditions. Lili is truly one of these survivors and her parents now trust her strength.

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