Danny H's Story & see
update from 2007 Danny H's Story & see
update from 2007 Danny Hutnik's Story, written by his mother, Nicole :
Daniel
was born nine weeks premature with difficulty swallowing. Danny came home
from the hospital but seemed to have a chronic cough. Several months later
and several bouts of pneumonia, they finally admitted him into a long term
hospital care facility. My mother cared for our five year old son Mikol so
I could stay with Danny at the hospital. David would work during the day
and visit with Danny and I in the evening for a short while. Danny and I
stayed there for three months. Neurologists, Pulmonary Specialists, and
Gastroenterologists were all involved with Danny's diagnosis and treatment.
They said that Danny's brain was sending the wrong signals to his throat
and that his throat muscles cannot strengthen. The condition caused him to
aspirate foods and liquids. They decided to place a nasal gastric tube for
feeding purposes. We went home and waited for surgical placement of the
gastrostomy tube (G-Tube). After the placement of the G-Tube Danny hated
to be fed. By the time he was a year and a half I found him sucking on the
tubing that would normally be placed in the G-Tube. To make a long story
short . . . you need a powerful sucking ability to get the liquid out of the
tubing . . . when the liquid came out, it was a very small amount . . . Danny
learned how to compensate for his disability and within a year and a half we
asked to have the G-Tube removed. We thought Danny's difficulties were
over.
We were wrong.
Over the six months, prior to the Chiari diagnosis, I watched Danny change.
Nothing specific I could put my finger on, but a change nonetheless.
Slurring of the speech caused from what seemed to be excess saliva in his mouth.
I chalked it off as being caused from several ear and sinus infections he had.
Then the headaches - Quite painful and immediate. He tolerated them
well with Tylenol and rest. The headaches concerned me, but I have
frequent migraines and assumed that one day they would diagnose him with the
same.
Our Hawaii trip on April 24, 1998: While in Hawaii, Danny dropped to the
kitchen floor quite hard. This concerned me but my husband tried to
relieve my worries by stating that Danny had very little sleep. There is
such a time difference between Hawaii and Ohio that Danny was probably
exhausted. This happened again that same day but again I was reminded of
our earlier conversation. He felt dizzy one other time before we came home
from Hawaii on May 3, 1998. The following week I took him to the
pediatrician's office to air my concerns about Danny's behavior. He was
diagnosed with strep throat.
The doctor on duty said that Danny was probably getting over a "flu
bug" and to just watch him. This was one of those "fluffy
answers" that didn't set well with me. I decided to watch him more
carefully. On Mother's Day, Danny again lost his balance and fell into
Grandma Hutnik's kitchen counter. This was the "straw that broke the
camel's back." I wanted more answers. Again I took him
back to the pediatrician's office the following day voicing my concerns.
Dr. White ran a battery of tests and suggested that Danny have an "MRI with
contrast." I was temporarily relieved in knowing that the test would
rule out my fear of a tumor. The following Thursday Danny had the MRI.
Friday, Dr. White called. He said that Danny's MRI was not normal.
That he had a condition called Chiari Malformation. . . . I heard
Neurosurgeon . . . . New promising surgery techniques . . . And I went numb.
I called my husband and my mother . . . and cried. Then I hopped on the
Internet and went searching for information. I called Dr. White back and
asked what Type of Arnold Chiari Malformation (ACM)? Danny was diagnosed
with Type 1 ACM (A.K.A. hindbrain herniation). Thank you, Dr. White, for
saving our son!
Arnold Chiari Malformations occur in the region where the brain and spinal cord
join. The lower portions of the brain (cerebellar "tonsils") are
located lower than normal protruding into the spinal canal. Normally they
do not. The cerebellar "tonsils" would normally be round but become
elongated when herniated. This misplacement -- herniation can cause many
different
symptoms including: headaches; dizziness; inability to breathe and/or
swallow; paralysis; blindness; deafness; short-term memory loss; etc."
In other words, the herniation of the cerebellum presses on the spinal cord
causing all of the above symptoms. (Danny's cerebellar tonsils are applying
pressure to the brain stem.)
The local neurosurgeon at Rainbow, Babies, and Children’s Hospital in
Cleveland, Ohio evaluated Danny on Monday, May 18, 1998, and scheduled his
decompression surgery for Friday, the 22 of May.
There are no guarantees with this type of surgery. The surgery will not
correct Danny's condition, but will hopefully relieve some of his symptoms.
It is not an elective surgery and is done to save the patient's life, including
Daniel's life.
Friday
the 22 of May, the neurosurgeon made a six-inch incision at the base of the neck
moving up toward the skull. He removed some Daniel's skull to make more
room for his brain. He enlarged the opening at the bottom of the skull and
top of the spine. The membranes (dura) that surround the spinal cord and
cerebellum were cut and a triangular piece of cadaveric pericardium was stitched
there to create a large spinal fluid filled space behind the cerebellum, brain
stem and spinal cord. Scar tissue was removed to facilitate fluid movement
around the brain. The neurosurgeon hopes that this will give the
cerebellum room relieving pressure from the spinal cord. He told us that
Danny is a very lucky boy as the compression on his spinal cord was more
significant than he expected. He said that Danny must have a guardian
angel watching over him. The surgery was approximately five hours in
length.
The
first 24 hours were spent in PICU (Pediatric Intensive Care Unit). When
Danny was placed in a private room I asked that he be removed from the morphine.
Morphine, although it helped him tremendously with the initial several hours
post-op, (in my opinion) should have been discontinued after 16 hours.
Morphine causes a burning sensation when the patient urinates. Danny
refused to urinate after the removal of the catheter so they replaced it.
If I remember correctly, the nurses are required to replace a catheter if the
patient refuses to urinate after 6 hours. The catheter was removed again
only to find that Danny would hold his urine an hour past the
"deadline." This time they waited just long enough for him to go on
his own. The next 24 hours was spent "walking on eggshells"
coaxing Danny to "go potty" before the "deadline."
Urinating became easier and he finally went on his own.
When we left Rainbow, Babies, and Children's Hospital in Cleveland, 5 days after
surgery, he was still exhibiting dizzy spells. By the seventh day post-op,
only a few spells remained. We hope that this will continue to lessen as time
goes on. There are medications available to relieve dizziness if it continues.
We hope medication won't be necessary. The "drop spells" that Danny
had in Hawaii and at Grandma Hutnik's home has not been present since surgery.
We are hoping that they won't return for a long, long time! Danny's future looks
brighter. The surgery went well and the neurosurgeon feels confident about
Danny's future. We thank the Lord daily for keeping Danny safe!
Mike
and Lauren (Danny's brother and sister) are very glad to have him home! We are feeling quite blessed by how much support family and
friends have given us during the past six months! Special Thanks to Spring
Garden Waldorf School's Families and Faculty!!! They went over and beyond
the call of duty!! They are Our
Guardian Angels here on earth! We truly feel lucky to have so many people
in our lives that care for us so deeply! THANK YOU!!
Today is September 11, 1998, and over-all Danny is doing quite well. He
has exhibited dizzy spells that cause him to lose his balance, but nothing like
the "drop attacks" he had before. Last week the dizziness caught
him off-guard, he reached for the wall to stabilize himself, but misjudged the
distance and fell on some toys. We live moment by moment . . . day by day
. .
. enjoying life . . . and thanking the Lord for blessing us in so many ways!
Nicole Hutnik
Update:
November
24, 1998
We decided to home school the children this year as Danny still exhibits
residual dizzy spells and continued slurring of his speech. He will be
seeing a pediatric neurologist at the beginning of December for the residual
Chiari effects. Our family misses
Spring Garden Waldorf School and the WONDERFUL people there! Thank you
again S.G.W.S. family . . . you are in our thoughts daily!
Last,
but most definitely not least, THANK YOU Chip for everything! You are a
God-Send - Our angel here on earth!
Love,
The Hutnik Family
Update:
June 8, 2007
We
fought for three years after Dan’s surgery to get a MRI.
Afterward, they said he is fine and Dan’s symptoms of dizzy spells and
bowel difficulties had nothing to do with Chiari.
I
have had trouble all my life, but the doctors claimed this, that, and everything
but Chiari. In January I began to
have issues again, but hid it from family and friends.
In February my daughter, Lauren, was misdiagnosed with Pseudotumor
Cerebri for which I immediately told them I believed it was Chiari causing the
pressure. They agreed with the Chiari diagnosis, but claimed it
wasn’t the Chiari causing the pressure build-up.
(Don't ever forget - Mothers know best!)
It
took my son's neurosurgeon not responding to my questions that finally sent me
over the edge. I began searching
for a specialist and luckily was directed to Dr.
Bolognese at North Shore Long Island Jewish Hospital’s The Chiari Institute in
New York. All the while, my
eldest son is completely disabled with alleged migraine headaches.
With everyone's MRI scans in tow (my 11 yr. old scan, Mike's 2 wk. old
scan, and Dan's 6 yr. old scan), we went to New York to meet Dr. Bolognese for
Lauren’s appointment. While
there, Dr. Bolognese diagnosed me with Basilar Invagination (BI) and said I was
the parent who shared these conditions with my children.
I wish I would have had a questionnaire prior to their birth as I would
not have checked the boxes regarding these issues - <giggle>!
The
appointment with Dr. Bolognese was AMAZING!
He looked at Dan's 6 yr. old scan and said that he was completely blocked
on the right side and that he "can fix that."
This is the SAME SCAN our local neurologist and neurosurgeon said “was
fine” and that the symptoms he exhibited had nothing to do with the Chiari.
We know Dan has Chiari and Basilar Invagination.
After the tests are completed in July, we believe he will be diagnosed
with Tethered Cord Syndrome too. Dr.
Bolognese wants to see Dan when Lauren comes in for her de-tethering surgery.
He also looked at Mike’s scans and confirmed Chiari and BI.
Dr.
Bolognese final diagnosis for Lauren: Chiari
I, Tethered Cord Syndrome, Syringomyelia, Basilar Invagination, and
Pseudotumor-LIKE Cerebri (NOT true Pseudotumor).
She is scheduled for TCS surgery July 10 in New York.
At that time they will see Mike and hopefully squeeze Dan and me in for
our evaluations. Pray for us.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Just
in case you don’t know this already, Chip is a TRULY AMAZING MAN!
He continually gives SO much of himself to his fellow man – He truly is
OUR guardian angel here on earth! I
am truly honored to know him! He is
family – Not in the traditional sense – But my heart, mind, and spirit claim
him as family! Talk to Chip for five minutes and you’ll know why I feel
the way I do about him!
May
tomorrow bring you much love, kindness, relief, compassion, and understanding!
With
kindest remembrances ~ Namaste,
Nicole
Lauren
12 yrs old
- Chiari I, Tethered Cord Syndrome<TCS>, Pseudotumor-LIKE Cerebri,
Syringomyelia, and Basilar Invagination - Surgery for TCS coming up on July 10
www.caringbridge.org/visit/laurenh
Dan
15 yrs old
- Chiari I malformation, decompressed in '98, continued herniation on the
right side, Basilar Invagination, and most likely Tethered Cord Syndrome
Mike
21 yrs old
- Chiari I malformation, Basilar Invagination, and most likely Tethered Cord
Syndrome