Meeting with Dr. Benson

Today, we met with Dr. Benson, a pediatric orthopedist. She is the one who talked to us at length when we were learning about Tian's condition. She is also an adoptive mom and has several other little girls adopted from China among her patients.

She took a lot of time to explain to us how Tian's hands and feet formed in while she was in the womb and what likely happened to make them form differently. She believes it is a genetic condition called Split Hand and Foot disorder where the mid-portion of the hands/feet does not continue to form correctly. She drew me pictures of how it likely developed and really gave a lengthy explanation. She says ectrodactly (which is what we originally thought Tian had) is similar, but is characterized by a "less organized" and more erratic pattern of bones.

Basically, Tian's hands and feet began to form in the usual way, but then the middle parts did not continue to develop, although on her right hand, all the bones formed, but the middle two are fused at the very top, so did not split.

As we had thought and hoped, Dr. Benson does not recommend any surgery on Tian's feet. However, her recommendations on her hands were a bit surprising to us.

She recommends two surgeries. The first would be done very soon and would take the webbing out on her left hand between the thumb and first finger. This would be fairly simple as far as surgeries go, but she would have a cast on that hand for four weeks. It will give her a lot more mobility and flexibility with that hand and much better ability to grasp.

The second surgery would be more complex and involve both hands. We would probably do this sometime in the fall after she is fully recovered from the first surgery. On the right hand, she would split the fused finger into two fully working fingers. She will need a skin graft to make up the skin in between the two fingers. The Dr. plans to use some tissue from her left hand and also some from her groin area if necessary. Also on her bent pointer finger which she believes is missing a tendon, she will fuse the top joint, so it will be straight, but the top joint will not move.

On left hand, she will actually move the pointer finger over into the gap left by the missing finger. This was a surprise to us, but seems to make sense. This would allow Tian to have three fingers together rather than a large gap. Some of the tissue from the gap would also be used to help reconstruct the fingers on the other hand that are being separated. Dr. Benson believes this will be much more functional and also will look better; as she gets older this missing space would continue to widen and be much more noticeable. Currently, with this hand, Tian tends to pick things up between the middle fingers using the space of the missing finger, rather than put things between her thumb and fingers. The Dr. believes this change will help with that function.

After the second surgery, Tian will have casts on both hands for four weeks. I'm sure that will not be fun, but when it is all done she will have two very functional hands, one with four finger and one with three fingers.

We like Dr. Benson very much. She and her staff are very nice and we have a lot of confidence in them. She showed us several plaster casts of all kinds of different kids hands that she has operated on. Two of them were Chinese adoptees. (Not that it matters really, but it was interesting.) I feel very confident in her and the fact that she comes so highly recommended.

Right now, Dane and I are feeling that we would prefer to do the surgeries here at home rather than travel to Philadelphia to the other surgeon all things being equal. We need to make sure our insurance will cover these surgeries. And we need to give it a bit more thought and make sure we are making the best choice for Tian.