Children’s Hospital Part II

On Tuesday we went to Children’s Hospital in Seattle for Hui-Hui’s second consult with Dr. Hanel. “We” are me, Tina, Hui-Hui and my Mom, Evalyn (NaiNai). Hui-Hui went because it’s his hand that Dr. Hanel is interested in. Tina and I went because we are his parents and want to make sure that he receives the best care possible. NaiNai went because she is the expert and wanted to hear for herself exactly what Dr. Hanel had to say. She knows better than to trust Hui-Hui’s care to rank amateurs like Tina and me.

Evalyn has been visiting us for the last couple days, which has been great! And really, I can’t imagine going to “Children’s” without her. Mom has been very involved with the care my nephew Devon has received there and knows her way around the place. Having her with us for these trips down there have made the process much easier.

On our last visit Dr. Hanel refrained from giving us any clear directive as to what we should do, which left us a bit perplexed. When we started this process, over a year ago, we assumed Hui-Hui’s hand would require some kind of corrective surgery. So when he told us that with Hui-Hui’s condition there was no clear directive and it was up to us, we were left with a perplexing situation. We had sort of assumed Dr. Hanel would present us with a clear course of action. Suddenly we were adrift. What should we do?

To clarify, only his left hand is affected. He has what is called “radial club hand”. His forearm is quite short, the radius more than the ulna, and he has no thumb. His index and middle fingers are also affected as they are somewhat fixed and don’t flex properly.

He has what I have been inappropriately calling “a funny hand”. But since he has been in our lives I have come to love that funny little hand. And it really doesn’t slow him down much. Somebody asked me once if he was right-handed. Um, yeah. He’s VERY right handed. But he uses “Little Lefty” quite well.

So on our last visit Dr. Hanel said we could really go either way. He told us to go home and think about it. He had an O.T. make a splint for him to sleep in to help stretch tendons in case we decided on surgery and told us to come back in March.

So we went home and tried splinting his hand at night. We were wimps, and when he fussed we took the splint off. It’s in mint condition.

We read up on radial club hand and pollicization surgery. We joined forums like limbdifferences.org, helpinghandsgroup.org, reach.org.uk. The more we learned, the more we wondered if surgery was the right thing. We talked with my sister about their experiences with my nephew Devon who has arthrogryposis and has had a series of surgeries at Children’s Hospital.

We decided to ask Dr. Hanel directly, what he would do if this were his child.

Now the blow-by blow:
It was a two-hour drive down. We thought it wouldn’t take this long as we would miss rush hour – WRONG. We got there late and it took forever to get checked in. Fortunately Mom had Tina go up to the orthopedic office and tell them we were here or we would have missed our appointment. We finally went up and waited in the second waiting room. Tuesday is “Hand Day” so we saw lots of other funny hands and little tiny kids in casts waiting with us. Finally they called us back. Hui-Hui was not excited to see Dr. Hanel, but he had nothing to worry about. Dr. Hanel’s bedside manner is excellent. He quickly put us at ease and commented on how much Hui-Hui had grown. He wanted to get a look at Hui-Hui’s elbow and with a little persuasion Hui-Hui gave him a quick glance.

Dr. Hanel then told us that in his job he often has to tell parents that a specific course of action or surgery is absolutely necessary and to not have it done would be negligent. Other times there is nothing that can be done. Then again, there are times like with our family where it could really go either way and all he can do is say what he would do if this were his child. Then he told us he would leave Hui-Hui’s hand the way it was. He sited a study of children with similar conditions that found children who had surgery actually fared somewhat worse as to functionality. If both of Hui-Hui’s hands were affected surgery would be a clear choice, but as he is affected unilaterally it’s just not going to help him that much.

We were very relieved to hear this. While I wish there was a way to make his hand perfect that is not the case. He has a funny hand. Surgery could rearrange it, but he would still have a funny hand. It would be different than it is now, but it wouldn’t be like his right hand. And since his right hand is perfectly fine, he’s going to always favor it. He already has a number of strategies for using his left hand and if we surgically rearrange things on him it will likely disrupt his present functionality.

Dr. Hanel told us he didn’t even recommend O.T. He said everything Hui-Hui’s doing right now is O.T. He told us to take him home and let him be a kid. Keep feeding him and loving him. This all sounded like a great plan to us!

It seemed like a great plan to Hui-Hui too! He was very pleased to get out of the exam room without being strip-searched or injected with any antigens. He swaggered back down the hallway to look at the fish again before we left, and then we went out for Chinese food.






We had a great lunch at China Village, just down the hill from Children’s, which I highly recommend. It’s a great place for lunch and they have food Hui-Hui will eat: soup and rice! If you give them 24-hour notice they can even prepare Peking duck for you.


Our trip ended with a small drama. When we left the restaurant and got in the car to head home we discovered Stinky Mouse had gone missing! We searched the car - no mouse. We double-checked the table we sat at in the restaurant - no mouse. WE LEFT HIM AT THE HOSPITAL!!! Fortunately we were just down the street. We drove back and Tina ran in to check with the ortho clinic to see if they'd found a stuffed mouse...
THEY HAD HIM! Life is good!!!