When Rachel was entrusted into our care in February 2009, she had a cast on her left leg. We were told that in two months the cast should be removed or changed. We had no idea about how utterly destroyed her leg was, and we were shocked at the condition it was in when the cast was removed. The orthopedic surgeon we went to took one look at her leg and x-ray, shook his head sadly, and wrote one word, "amputation," in her file. He said the leg was not salvageable. It hangs limply from just below the knee--she has no control over it. The fibula is gone--either she was born without one or it was sacrificed to try to repair her tibia. The ankle joint is a mess, and the skin is severely scarred from all the operations.
I felt sick about it. Here we'd just received this frightened little 8-year-old child and we were going to have to explain to her that, even here in our care, the operations wouldn't stop, and that, in fact, we were now going to have her leg removed! I thanked the doctor, told him that Rachel was too anemic for surgery, and took her home.
After I blogged about the experience, someone contacted me and put me in touch with a world-famous ortho surgeon. I sent him Rachel's x-rays and photos of her leg, and he expressed confidence that the leg could be saved. I did a lot of research on the surgeon and the method he was proposing and decided that, when Rachel was stronger emotionally, we'd try to get her to the US to do that surgery.
But, over the last year, I've changed my mind. I've gotten to know Rachel better and talked with her about it, have studied it more and read other people's stories, have prayed about it and asked others to pray, etc. Here are some of the events & factors that made me reconsider pursuing this operation for her:
#1) I've explained both options (amputation or Ilizarov) in detail to her several times and told her that both operations hurt, that there may be ongoing issues and procedures even after either surgery, etc. One evening Rachel told me, "Take it off--my leg." It wasn't so much what she said as it was the calm and confident way she said it. I was surprised--both by the fact that she really seemed to be at peace with that and by the fact that suddenly I was ok with it, too. I guess that's as it should be.
#2) Rebreaks do occur after salvage operations, and evidently they aren't rare. She may have to wear a stabilizing orthotic or cast for a long period of time after the Ilizarov is removed (which itself can take 6-8 months for each lengthening session). And even if the bone never rebreaks, Rachel's leg will never look normal--it's too surgery-scarred. It will always look like a badly burned leg and may always need to be protected.
#3) While in America this summer, I spent hours researching our options on the internet, One day while riding with my sister, I noticed a little orthotics and mobility aids shop and stopped to ask about wheelchairs. They handed me a magazine, and it turned out to be about prosthetic limbs. It was full of amputee experiences, and I read their stories all the way home and was moved and encouraged about Rachel. It seemed as though, compared to the other option, with the prosthetic, Rachel could spend more of her childhood walking, running, and playing, unhindered by crutches, wheelchairs, walkers, braces, or the fear of rebreaking her post-op leg.
#4) I received some advice from a person who had walked through something similar with her child and had also seen things from a unique angle--with her permission I'll add excerpts from her email to me here. This email really clinched my decision not to keep moving toward limb salvage surgery for Rachel
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Back in India, I took Rachel to Hyderabad to see an ortho surgeon she hadn't seen before, the one who did such a good job with Justin, Yemima, Thomas, and Noah. I wanted to get all the details about amputation and plan the surgery for her school holiday in April.
Rachel spent most of her early childhood in the hospital without a relative or friend. It's obvious that Rachel's early hospital experiences were very traumatic for her. She was in terror of hospitals when she came to us. She has overcome some of this, but she still cries and has to be reassured each time we go, and to help her to be more at ease, I try to explain exactly what is and isn't going to happen. Rachel went into that hospital knowing we were going to discuss removing her leg, and she was cool with that. I had told her that it was just going to be an office visit with an x-ray. She went into hysterics outside the hospital, though, when an orderly grabbed her wheelchair and tried to take her on ahead of us on a shortcut through the emergency area--she thought they were wheeling her off to surgery! The orderly wouldn't let me push the chair myself, so I carried Rachel through the hospital. (I was thrilled to see though, that later at the eye hospital when another orderly grabbed her chair, Rachel let him push her with Erin and I walking nearby. It means she's believing more and more that we'll keep our word to her.)
The surgeon ordered the x-ray below, looked at it, and said, "I would not recommend a salvage operation. The fibula's gone, the tibia is in tatters, the ankle joint is shot...because of all the surgical damage, we don't know where the nerves are...there would be no guarantees... I recommend amputation below the knee."
His recommendation, though, was to give Rachel another two or three years before amputating her leg so that she could mature a bit and have more of a role in the decision-making. In the meantime, he proposed something I didn't know was possible--an "orthotic-prosthetic" that would "encompass the residual limb," have a foot for walking below that, and allow Rachel's weight to be borne by the area just above her knee.
He told us he had recently ordered a similar prosthesis for a boy with another condition, and that "that boy's dancing!" I was so excited to hear that! And you should have seen the look on Rachel's face when we told her that she would be getting a prosthesis without having to go through surgery, and that in a few months she could be walking!
-------------------The orthotist was so sweet to Rachel. He took the time to connect with her and explain to her all that was happening. I wish everyone treated our children the way this orthotist spoke to Rachel.
You can see in the picture below that there's a five-inch difference between the length of Rachel's legs (left heel at 24 inches, right at 29).
The orthotic-prosthetic leg will be ready in two weeks, and we'll take her back to Hyderabad for the fitting. At first, it will be a thigh-high prosthetic without a knee joint to help her gain stability and adjust to walking on two feet. After six months, when Rachel's used to the first leg, we're to bring it back in and have a knee joint added to it. Eventually, if not at that time, the leg will be cut down somewhat on top. She'll need crutches or another aid for a month or six weeks while she's practicing walking, but soon she'll master it and can leave her crutches home from school.How exciting is that?!
Stacy's seven. She came to us in December, at that adorable first-grader age with two missing front teeth. There's nothing about the way Stacy carries herself that suggests "orphan" or "abandoned child." She's just so well-adjusted and so amazingly emotionally free. She's a happy, carefree, giggly, silly, sweet, energetic, goofy, bright, fun-loving little girl. Here she is holding Cassia:
Here's the way the top of Stacy's head looked. The area where the cyst protruded was very sensitive, and if you touched the skin there lightly you could feel her heartbeat. The cyst was right underneath the skin, and it wasn't possible to tell whether or not it was attached to the skin.
...there's no hole in her skull, and Stacy's running around everywhere. She'll start school next month for the first time in her life. She'll never again have to worry about accidentally opening the cyst. 
It felt wonderful yesterday to be able to take these seventeen excellent-quality Recron pillows with soft waterproof allergy covers to Angel Home (thank you so much, Carol, Dorothy, & Becky!) 
...Solomon and Levi...
...Daniel and Judah...
...and Elijah, who was not feeling well yesterday (bless his heart).
