Danae's Story
Born: 1990
Treatment: Lengthening
Date written: ?
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