Danae's Story
Two hours after our daughter Danae was born our pediatrician
came into the room where Denise, my wife, was resting and told us something
was wrong. We were stunned. When Danae was born she looked perfectly normal
to us. We hadn't had the time to study her legs to know what he was talking
about. As he stood in the doorway he was surrounded by four or five nurses
who were trying to offer some emotional support. He said there was something
wrong with one of Danae's legs and he stated that in cases like this when
one thing was wrong there were usually other things wrong also.
They decided to put Danae through a battery of tests to check her other vital functions. We waited anxiously for hours not knowing if they were going to have even worse news for us deal with.
When the tests came back everything was okay except her leg, which had an inexplicable problem. According to the doctors the x- rays appeared to show that her leg had been pulled out of joint, possibly during the delivery. We were relieved having been told that the problem was probably easily corrected.
We were then sent to the Kluge Children's Center in Charlottesville when Danae was three days old. They pushed and pulled on her legs, looked at her x-rays and then sat us down to give us their conclusion. Danae had been born with a very rare condition in her right leg that prevented her leg from growing properly. They said that at maturity Danae's leg would be 8 to 10 inches short. The orthopedic surgeon told us that they would have to amputate her foot in order to be able to properly fit her with a prosthesis or artificial leg. They wanted to wait to amputate her foot until she was one or two years old. As they explained everything to us we couldn't help crying in front of the doctors. We were devastated. We took our little Danae out to the car and we both broke down and cried again.
As Danae matured we continued to bring her back to Charlottesville for regular check-ups and to be fitted for a new shoe lift that enabled her to walk a little easier. After eighteen months had passed we decided that we couldn't put off the inevitable and that it was time to schedule the surgery for her amputation.
I remember sharing with a small group of men at a Christian Men's retreat that I felt as though God was crushing me. The weight of the decision was almost more than I could bear. Our Pastor announced in Church that we had decided to go ahead with Danae's amputation. We were hoping that people would understand. We felt that we had exhausted all of our options, other than continuing to pray for her healing.
We were sitting in the surgeon's office the next day deciding on a date for amputation when he casually commented that he thought that Danae's leg had grown a little more than he had expected it would. We immediately asked what he meant by that and how it would affect the decision we were making at that very moment. We concluded at the end of the meeting that we should get one more opinion from a specialist in Maryland that was an expert in leg lengthening even though our doctor in Charlottesville advised us against the procedure.
A Doctor from Russia, named Ilizarov, had developed a system for lengthening short limbs using a system of rings and rods that passed through the flesh and bones. The method had been practiced and perfected for the past 50 years in Siberia in the Soviet Union. It was only with the new openness of the Soviet Union in the mid 1980's that much of this medical technology came pouring out of Russia into the United States. It was our understanding that before this time children born in America with Danae's condition had only one choice: Amputation. The specialist in Maryland had studied under Dr. Ilizarov and assured us that Danae was an excellent candidate for leg lengthening.
We were torn while trying to decide what to do. We had been told that amputation was relatively simple and painless, did not require extensive physical therapy, and was not emotionally scarring with the biggest drawback being the need to be fitted continually with a new artificial leg.
The leg lengthening process was long and painful, potentially fraught with problems such as nerve and muscle damage, infections, joint injury, and might not even work. If it failed we would have to revert back to amputation. If successful, Danae would one day walk on her own two legs without a prosthesis or shoe lift.
We prayed that God would give us wisdom about what to do. We also continued to pray, with the support of our church, that God would heal her completely. We ultimately decided that we could not allow the surgeon to amputate her perfectly good foot. We knew we would regret that for the rest of our lives not knowing if there would have been a chance that she could have been helped by this other procedure. It was the hardest and most stressful decision we have ever made as a couple.
Twice we prepared for surgery only to have both cancelled because Danae had a head cold and could not be put under anesthesia. We wondered about the delays and if God was trying to tell us something or going to work a miracle. We continued to pray for her healing. Finally the day came when Danae was once again scheduled to have surgery.
That morning she was not allowed to have anything to drink or eat and her surgery was scheduled for 11:00 am. The surgery that was scheduled right before Danae's took two hours longer than expected. They didn't come for Danae until after one o'clock. Danae had woken up at six in the morning. She would normally be hungry immediately. We had prayed that God would make her comfortable and that she would not get upset about not getting any food to eat or drink in the morning. We were dreading having to deal with her crying and complaining all morning. After the eleven o'clock deadline had passed I was getting upset because I knew that she had to be getting extremely hungry but amazingly Danae didn't say a word or complain about anything related to eating or drinking.
When they came to take her away, we were hugging and kissing on her as she became drowsy from an oral anesthetic. As she was saying 'bye bye' to us down the hallway I started crying again. I was so afraid of what they were about to do to my little baby. The next 7 hours were torturous for me as we waited for Danae to come out. They finally came to get us and they took us down to her recovery room. Danae was still very drowsy and would occasionally cry out in pain and black out again which I found very disturbing.
Her leg looked horrible. The surgeon had put 8 metal rods the size of a thin pencil down through her flesh and screwed them into her leg bone. There was also one thinner wire that simply passed all the way through her leg and out the other side. The rods and wires were connected to metal rings that held them in place. The outer portion of her leg bone had been cut in half and was being held in place by the rings and rods. We had seen the devices on other children and adults but not fresh out of surgery covered in blood. It was a sickening sight. There were many tubes and wires connected to Danae.
She was moved up to her regular hospital room after about an hour. When she finally came to she didn't seem to notice this huge contraption on her leg but did become extremely upset about the IV in her hand. She thought we had taken her hand away because she couldn't see it since it was covered completely with bandages. We were amazed at her acceptance of the device on her leg.
Over the next few days the pain medication that was coming in through her IV was keeping her fairly comfortable. At one point the IV was not working very well and the nurse had commented that if it didn't start flowing properly soon that they would have to insert a new one somewhere else in her arm. We were praying that that wouldn't have to happen. We decided to go for a walk with Danae in her new wheel chair. I wasn't being very careful and before I knew it I had accidentally gotten all of the IV tubes wrapped around one of the wheels of the wheel chair. Danae was screaming because it had jerked her arm downward over the side of the chair so I quickly backed up the chair and untangled the tubes. I felt like such an idiot but we also noticed that her IV had started flowing properly again. She didn't need a new one while we were there.
After a couple of days the nurses came in to show us how to clean her pin sites. This was painful for Danae which made it difficult to do knowing we were hurting her. Each of the open wound sites had to be cleaned thoroughly each day. They also showed us how to begin stretching her leg. We had to crank four separate bolts four times a day to slowly begin pulling her leg apart in order to gain the length she needed. As the leg was being pulled apart it was also trying to heal itself so that new bone was being formed in the gap.
Fortunately we were able to leave the hospital a day earlier than normal. They had only allowed one parent to stay in the room at night which had added to the stress of the situation. With much anxiety we brought Danae home. We had heard all sorts of horror stories of all the things that could possibly go wrong. Expect many infections, we had been told. We heard of pins and wires breaking, joints being pulled apart and many other things that we were dreading occurring. We prayed that God would have mercy on Danae and that her experience in the Ilizarov device would be as comfortable as it could be. We were grateful that Danae only experienced two minor pin site infections that were caught early and dealt with quickly.
After five weeks she began walking with her pediatric walker again and putting pressure on her foot. Soon she was so acclimated to the device that it now seemed easy to accept it's presence on her.
The muscles in Danae's leg would soon start to get very tight because of the stretching process so she required physical therapy almost immediately. Physical therapy was possibly the worst part of the entire experience. Danae had to see a therapist 5 days a week at the beginning. As the therapist worked on her leg, Denise or I, and sometimes both of us, would have to hold Danae physically down as she was screaming. Many times her leg would be bleeding after a therapy session. She was becoming withdrawn and angry at us. We hated having to hold her down while she was being hurt. During one therapy session she cried out "I'm sorry, mommy, I'm sorry mommy". It just broke our hearts when we realized that she thought she was being punished for something.
The therapy soon became an emotional nightmare for us and especially Denise who had to endure most of the screaming and most of Danae's anger and frustration. The anguish of watching your child in pain and having to participate in the process is indescribable. The therapy eventually went from five days to three days and finally to two days a week until the end. Danae had to endure 7 months of painful therapy.
Fortunately Danae developed a unique relationship with her Christian therapist. The natural assumption would be that she would have developed a fear and possibly hatred for this person that was constantly hurting her, but it didn't turn out that way. Even now when she goes back to visit, she loves to see and hug this person who once hurt her so much. Somehow the care and concern that the therapist felt had gotten through to Danae.
At our last visit at the Doctor's office in Maryland he confirmed that Danae's leg was now two and one half inches longer than it was before. According to the doctors the operation had been a success.
When you look a Danae today it is hard to imagine that she was ever in such a strange device other than the telltale scars on her leg. We now have more hope that one day she will actually walk on both legs normally. Originally we were told by the doctors that Danae would have to endure a minimum of two more lengthenings in years to come in addition to hip surgery. They now think that they can get all the length needed by waiting until the bone is a little longer and stronger and by lengthening both the femur and the tibia all at once. We continue to pray that God will heal Danae completely. We see the hand of God in all that has happened with the Doctors and yet we would have preferred to spare her having to endure such pain. We still believe that God is working out all things for the good of all involved. I believe that Danae has a unique part to play in God's plan that would have been different had she not been born with this problem. We have all been changed because of what we have endured. God is taking what He crushed in me and is now forming it into something else more important. We continue to pray for wisdom and guidance concerning all medical decisions related to Danae. Inretrospect we feel that we made the right decision for Danae. Danae does not remember any of the three surgeries that she has had. She is looking forward to the day when she will not have to wear, what she used to call, her "super shoe". She now calls it her "stupid shoe" possibly because she gets tired of the questions that kids, who meet her for the first time, ask her about her short leg. Her classmates have come to accept her the way she is. We have appreciated your concern and we thank you for continuing to pray with us.
If you have questions or just want to talk, send an e-mail to Donovan and
Denise at donovan@artistman.com
More info about Danae can be found in some short stories in The Donovan Douglas Collection