Medical Mayhem: Part I

This week Tom took off a day and a half for Sidney’s medical appointments. Eli was able to come along and did a super job of distracting his sister. Wednesday was genetics.

Up to this point, attempting to understand the cause of Sidney’s condition was speculative. This is evidenced by the amount of time I have spent reading online medical journals, attempting to unravel the mystery. Last July, our pediatrician referred us to a geneticist to better understand what caused her condition. A combination of bad weather and two surgeries prevented a visit until yesterday. This particular appointment was one of the most fascinating of the many since returning home in July.

During the appointment, Dr Oleg our geneticist, as well as a genetic counselor and a resident from the university hospital talked with us for about an hour. He started by explaining that something typically interferes with normal development of limb buds between 6 and 8 weeks gestation. This interference is something in a pregnant mother’s outside environment. He agreed it is possible her mother came into contact with some kind of toxin, damaging the gene responsible for the growth of digits. This could especially be true, given Hunan province is the “the rice bowl of China.” Sidney’s province is the second largest rice producer in the country. Tom asked if adequate nutrition was a factor. Dr. Oleg leaned toward the idea that it was exposure, letting us know that anytime a bone is completely missing, something interfered outside of the body. He also told us trying to uncover the reason with 100% accuracy is like going into a dark room of medical books and trying to find one misspelled word in all the books with a nightlight.

In addition, the doctor completed a series of measurements including the inside and outside of her eyes, circumference of her head, length of her nose, the outside and palms of her hands, and finally the tops and bottoms of her feet. As he rattled off a series of measurements, and the scientific name of each body part, Tom and I tried to contain our laughter. A combination of stress over the visit and our quirky sense of humor took over. Not only was he taking measurements, he was ducking into and out of the tight area between the exam table and the wall. This was in an effort to get the correct angle, looking at all the features on her face and how they lined up. Squatting down on the floor he continued his list of various parts of the face as the gentic counselor frantically wrote everything down. On the side of the room, the resident with a slight look of mad scientist observed.

Prior to our visit, Dr Oleg studied Sidney’s medical information. One of his concerns after looking over the information was the rate at which she is growing. If she continues at the current rate, she will be 4 foot 6 inches as an adult. This is something which will probably change, but it is something we want to monitor. There is no disputing our little spicy chili pepper is petite and small, however she has grown a few inches since July. I questioned the use of a Western growth chart as it does not take into account her ethnicity. Much to my chagrin, he did not take her ethnicity into account and was using a growth chart from the United States. He argued that people who immigrate from other countries typically catch up to our growth charts. He used the example of Pigmies who moved to the Western world and quickly caught up. Mommy and Daddy might not have a scientific degree, however common sense tells Tom and I that we need to give her more time. I reminded him of her giardia, the length of time she had the parasite, and a minimal amount of nutrition in an environment of custodial care. He said they also went back and forth when discussing her health history prior to the visit. We will give her at least a year before reassessing her height. Thereafter, we will consider a blood test which can determine if she has some kind of thyroid issue. This is not funny, but there is some humor considering everyone on Tom’s side of the family has some kind of thyroid issue. I think the geneticist enjoyed bantering back and forth with a mother unschooled in science but convicted about her daughter.

Outside of growth, the geneticist is taking a very common sense approach to her care. Meaning, we will have an EKG, renal ultrasound, and a series of skeletal xrays . Luckily, the EKG and renal ultrasound will take place in a hospital about 20 minutes from our house, and the xrays can be taken when we are already at the university hospital, completing visits for her hand. Though we will not know entirely until the tests are read, the doctor felt confident in saying, he does not think there is anything major with her heart. He detected no murmors and said the test will decipher any possible damage to vessels.


Because Sidney functions as a normal 2 year old, probably ahead of her peers, the genetic counselor was quite surprised at her fine motor skills. This is the reason I had Sidney coloring, drawing circles on a piece of paper when they walked in. We never want to give the impression that Sidney is limited by her anomalies.
As a final note to this very LONG post, I will say for the thousandth time that none of this makes a bit of difference in our daily lives. We understand and respect that special needs adoption is not for everyone. But in the words of another adoptive parent that I read, Sidney’s only special need is her need to be special.