On March 5, 1998, Alexis' parents were told that she had Basilar
(invagination). It had been discovered when the MRI was performed on her in
July 1997. Alexis' parents were not aware of it. When they asked the
surgeons why they weren't told of this condition, it was explained to them
that there was the hope that the basilar impression wouldn't advance. When
the surgeons did the initial decompression surgery in August 1997, they
weren't sure if Alexis would require a shunt in time. Surgery for basilar
impression requires a halo or cast, and that would get in the way of inserting
a shunt. As it turned out, within a week of her decompression surgery, Alexis
was rushed to surgery to insert a shunt in order to save her life.
Alexis was operated on at A.I. duPont Hospital for Children in Wilmington,
Delaware. How blessed we are to have this outstanding hospital so close to her
What is basilar impression? In layman's terms, it is when the
brain begins to
slip into the area of the spinal column. The surgeons had hoped that Alexis'
brain would not continue to slip after her decompression surgery in August
1997, but it did. Her parents were told that without the surgery, the brain
would continue to drop into her spinal column and that her head would be
pushed forward toward her chest, eventually causing her death. There were no
options for Alexis. Surgery was the only way to save her life.
The usual method for this operation is to break the jaw and enter the neck
area from this direction. Since Alexis had already undergone decompression
surgery, her neck wasn't strong enough to enter this way. The surgeons
decided to re-enter through the incision made at the back of her skull.
Alexis entered A.I. duPont at 6:00 A.M. on May 14, 1998. It broke our hearts
to take her there because we knew what she was facing. She also sensed that
something was going to happen to her. We couldn't explain anything to her for
she isn't capable of understanding any of this. The nurse gave her something
to calm her down. The hardest part was watching them take her to surgery and
not knowing if she would survive the operation.
She was in surgery for 6 hours. First, they placed her in a halo with 6 pins.
Next, they removed bone form both her hips to use when the metal rod was
placed in her neck. A spinal fusion was going to be performed. Her skull was
re-opened along the same incision that was made during her decompression
surgery in August 1997. A metal rod was placed in her neck to prevent her
brain from slipping into her neck.
(Go to http://mcns10.med.nyu.edu/cases/bas_invag/bas_invag.html
for pictures of what a rod looks like in her neck).
On May 22, 1998, Alexis came home from the hospital. From the very
beginning, she was uncomfortable in the halo. Several of the pins became
infected and had to be moved. On June 6th, we observed her head moving in the
halo. Her mother took her to the hospital and she and Alexis stayed
overnight. It was decided to add more pins to the halo. In the process,
three of the pins broke through her skull and the halo collapsed. Alexis
screamed and reached for her mother for help. Her mother knew instinctively
what had to be done to save her child's life. She put her body on top of
Alexis and braced Alexis' neck with all her strength. Her mom held her in
this position and cried for help. The doctors rushed Alexis to the cast room,
knocked her out, and placed her in a Minerva cast. The cast went from the top
of her head to her waist.
Because the cast was so tight around her chin and mouth, a feeding tube was
inserted through her nose to her stomach. Alexis weighed 30 pounds when she
was placed in the cast. She remained in the hospital for a week. On June
11th, Alexis celebrated her 4th birthday at A.I. duPont. Once Alexis came
home from the hospital, visiting nurses came to the house everyday for four
hours to assist Alexis' mother with her care. Being in a body cast during the
summer wasn't easy for Alexis. She loves to swim. Her cast was finally
removed on August 11th. Because she had lost several pounds and the heat was
getting to her, the doctors had decided to remove the cast 3 days ahead of
schedule. Removing the cast was a traumatic experience for Alexis. To this
day, when she hears a saw, she puts her hands over her ears and runs away.
As soon as her cast was removed, we took Alexis home from the hospital and put
her in the pool. She was in her glory! We try to take her in the pool every
day for an hour or two. The rod in her neck will limit her movement, but it
doesn't stop her from getting around in the pool. She is a "little fish" and
swimming is good for her.
Alexis will begin attending a special school in November. She will go to a
school that is close to her house. They will provide her with the intensive
one-on-one attentions that she will require. Alexis is extremely bright and is
rapidly catching up. A teacher comes to her house every day to work with her
for an hour and a half. Alexis has a winning personality and everyone loves
She is very independent and loves to feed herself. Alexis loves to pick
flowers, play with her sisters, and watch Poo Bear at the Beach! There is
also a little kitten that she loves to hold. Alexis loves to play on her
swing and to visit. Her teacher and family work with her on the computer.
There is so much computer software available to assist children like Alexis.
None of this has been easy on Alexis' family. It's hard on her siblings to
understand the seriousness of her illness and the fact that they might loose
her. Nor do they really understand the time that their mother needs to give
to Alexis. Years ago, children like Alexis would have been institutionalized.
Without the MRI, she would have passed on by now. A great deal of stress is
experienced by families who have a special child like Alexis. Thank God that
modern medicine and technology has advanced far enough to allow Alexis to
remain at home with those who love her most.
Alexis' mother deserves a purple heart...for she is her main caretaker. A
father can go to work...Siblings can go to school or out with their
friends...but a mother is there 24 hours a day.
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