We have known for over three years that the day would come when we would have to make a decision about Lan's foot/leg. Lan's body is telling us that the time has finally come.
Lan was born with tibial hemimelia of her right leg/foot. It is a rare birth defect, being seen in about 1 in every 1 million live births. What this means is that Lan's tibia, the longest bone in the body besides the femur is malformed. There are different degrees to this condition but in Lan's case it causes her to have a shorter tibia, an incomplete ankle, and the three rays and toes in the middle of her foot (toes 2,3, and 4) completely missing. Her foot is very small and thin. She has a big toe and next to that her baby toe. The toes in between don't exist. The width of her foot is about two inches.
As she grows and gains weight, it gets more and more difficult for her small leg to support her weight. We are seeing that now. She has recently been feeling alot of pain in her foot and it is limiting her mobility and quality of life. In the last six months the difference between her two legs and grown by another centimeter. There is now over a 5.5 cm difference in the length of her legs.
On Thursday morning we met with the team from Shriners in Salt Lake City (Caden was also seen evaluated and then he started his two days of pamidronate IV drip to help strengthen his bones.) We wanted Lan to have a say in the treatment approach chosen for her so she was carefully educated about the two choices she has.
The first choice is to have a Symes amputation. Her two toes and the front half of her foot would be amputated. She would be left with her heel pad. She would spend six weeks in a wheelchair and walker while the site heals and then be fitted with a prosthetic foot. The foot would look real and be connected to a brace that would go up to her knee. It would slip on and off like a boot. Every two years or so she would get a new prothetic since she will be growing. Built in to her prosthetic would be a lift so that her legs would be the same length.
Her second choice is to have 2 leg lengthening surgeries. One surgery now and another when she is about 14 years old. The surgery would be to break her tibia and insert four long screws into her leg. These screws would then be attached to a round metal halo about 4 inches from her skin. This is called a fixiture. Each day, for six months, I would turn the screws which would pull the break in her bone apart. The break would fill in with new bone. This surgery would help her leg length difference but would do nothing for her foot. We would still have that issue.
Lan paid very close attention. She was shown prosthetics. She was told to take some time to think.
We then left the team and proceeded to another department to get a new brace for her foot. The one she has now causes her alot of pain so they needed to make a new style for her. While we were waiting alone in the quiet I looked at Lan and asked, "So, Lanni Lu, what do you do you think you will want to choose?" Her eyes filled with tears and she repeatedly tried to blink them away and quietly replied,
"I wish I could choose to be a different person."
She is six years old. Such big choices for such a tiny girl.
After she was casted for her new brace we went upstairs to admit Caden for his two day IV drip. In the elevator was an outgoing 10 year old girl on crutches who had something big under her pant leg. I told the little girl she sure was good on her crutches. She smiled and pulled up her pant leg to show us her battle wounds. Lo and behold she was wearing a fixiture in all its big, heavy, metallic glory. The 4 inch screws glittered and Lan's grip on my hand became very tight and her eyes very wide. She saw on this little girl's leg her future.
Lan has made her decision. She chooses to have the Symes amputation and prosthetic foot. We agree with this decision. The doctors agree with this decision. She will have her surgery the end of May or beginning of June. She will spend the summer in a wheelchair and then get her prosthetic in time to get used to it before school begins in the fall.
Her tiny foot has served her well but is having a harder and harder time helping keep up. We will miss her baby foot. We have grown to love it dearly. But, we will prepare to bid it farewell. We will go to the photographer and have pictures taken of this tiny appendage, we will make footprints of it in paint, we will make a cast of it in plaster. We will tell it goodbye. We will cry.
But we will look ahead to a new future for Lan filled with many things she can't do now...and especially the opportunity for her to choose ANY KIND OF SHOES SHE WANTS. No longer will she be limited to a select few but will have the whole shoe store open to her. For Lan, this is huge. Of all my girls she loves shoes the most.
While it will soon be gone, that tiny unique footprint has made a huge impression in our lives and in our hearts.
