I read once that adoptees, as adults, struggle with the unknowns of their family health history. And in most adoptions, there are more unknowns than knowns. There was an initial medical checkup when H entered the orphanage but no follow up, because there were no immediate needs. When we first heard about Hanissa, her paperwork said she walked with a limp. Families traveling to the orphanage took videos of a running, energetic girl. From those videos, we could see her limping and skipping but we saw her finding a way to deal with it. Once we met her, we saw that her right leg couldn’t be straightened and there were other issues, too.
We took X-rays back to China and started talking to friends in the medical field. While our friends are great at what they do, they are not bone specialists. Really, we just wanted to make sure that there was no medical rush to bring her back to the states. We also wanted to see if there was a simple, obvious problem that stood out. They were able to point us in the right direction and we began to research some possibilities. But still, everything was just guess work.
The first six months home, internationally adopted children often grow a lot. Hanissa had a great appetite and often ate 4 or 5 eggs for breakfast. She craved protein rich food. And she started to grow. As she gained weight, her leg began to bother her more and more. (The doctors say it is something akin to severe arthritis pain.) She wasn’t getting taller, but she was gaining weight. In the beginning, walking up and down six flights of stairs and walking all over our city was too much for her. We ended up carrying her or using a stroller. Little by little, her leg seemed to hurt less and she starting walking more.
After arriving in the states and having dozens of more X-rays taken, an orthopedic specialist concluded that Hanissa has bone dysplasia, also known as dwarfism (I didn’t even know that was a word). Interesting enough, “dwarf” is the word the caretakers at the orphanage used regarding H when talking to another family, but never to us. Bone dysplasia most often occurs from a mutated gene, but can also occur from rickets (caused by malnutrition), and it presents itself in different ways. The issue with her leg is most obvious, but all of her bones are affected. David and I have wondered if her issues are from malnutrition and possibly some injury or sickness from her past.
We visited another doctor who specializes in childhood bone dysplasia and genetics. She agreed with the first doctor’s findings but had some questions. She ordered more x-rays (if you see a glowing child, she probably belongs to us) and blood tests (which Hanissa handled fabulously). The next day the doctor called us to talk about her findings. She doesn’t display the outward physical features or the inner physical disabilities of the most common types of bone dysplasia, but definitely has bone dysplasia. And it is possible that she survived a severe case of meningitis.
Our girl had lots of doctors scratching their heads. Several conferred on the x-rays and after many meetings, it was decided to send copies of H’s X-rays to an international forum. We now believe we have a diagnosis. And if correct, Hanissa is one of 6 known cases in the world for this form of bone dysplasia. And of those known cases, there is only one who has a long-term medical case history.
Finally, after months of prodding, poking, and observing, we have a plan for treatment. We have starting working with an amazing physical therapist and we are hoping to see some improvement in the movement of her leg so that surgery can be postponed for several years. She has exercises to do, a lift in her shoe to help her use more lower leg muscles, and a sleeping brace.
Thank goodness this first brace was vetoed by our therapist.
Hanissa’s will look something like the one below. It actually will apply pressure to her leg throughout the night to help extend and straighten the leg. It relaxes with her natural movement and then applies pressure again.
Hanissa is a very active little girl. She’s learned to live life even with her bone and joint issues. After seeing her X-rays, the doctors expected her to have very limited motion and each was shocked to see her move, jump, and run. It’s great that she has found ways to get around. Now we just have to retrain her body to recognize the need of some of her unused muscles.
I’m thankful for the wonderful group of doctors and therapists who have taken an interest in Hanissa. They have been gentle and understanding of her fear of all things medical. We are definitely in the right place for our little one. As always, our Father knows what His children need.