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His life
here was too short
but his love will be with us forever
until that glorious day, we can
once again hold him in our arms
Angel
Chase’s story
May
8-11, 1991
This letter is to
inform you of the three days with our son Chase Jordan Milsner, C.J.
Chase was born on
MAY 8 1991 and died on MAY 11 1991. He died of a neurological defect
called hydranencephaly (hyd-ran-in-sef-ely). We had three days with C.J
before we had to give him up. Chase was delivered only 4 ½ weeks before
his due date but his brain had not developed since the first trimester
and his lungs were not developed enough for his brain to control them.
Lauri and I feel lucky we had the time to spend with C.J. but miss him
just as if we had years to be together. I hope this can help any of you
who have gone through this or watched others in this time of grief.
These are the
events leading up to Chase's Death MAY 11 1991
When C.J. was two
months from his due date of June 9, Lauri's doctors found he had an
abnormal growth under the right side of his skull. They also saw a dark
spot inside, which looked like fluid, but could still be solid and only
after delivery could this be confirmed. This was diagnosed as unilateral
hydrocephalus (water on the brain) and is caused by the brain tissue not
absorbing the spinal fluid as it is being continually produced. This was
the diagnosis until delivery.
It was determined
by the Neurological specialist to have a Cesarean Section (C Section) 4
½ weeks early in Sacramento where these specialists are located. In the
operating room were two of Lauri's doctors and one of Chase's, along
with all the nurses that can fit in one operating room.. Chase did not
breathe at delivery, so his doctor began pumping Oxygen into his airway
by hand. This was the doctors clue that something else had gone wrong.
His heart was strong and steady but the eyes were not reacting to
stimulation from light. In fact, his only reactions were from pain
stimulation, which are sensed in the spinal cord. Any one of these
symptoms could mean significant problems, so C.J. was rushed to the
Neonatal Intensive Care Unit, NICU, where he could be placed on a
respirator and monitors for his lungs and heart. It was ten minutes
before C.J. could make his lungs work and even that was inconsistent and
not rhythmic, so the respirator was left in place for the rest of his
life.
Chase Jordan
Milsner 6 lbs 4 oz, 19 ½ inches long. C.J.'s head was a little larger
than 'normal' but that was the only visible effect. It was real scary
for us until the "CT" scan, X-RAY, of Chase's head was done
because nobody knew why C.J. had no real responses to stimulation.
C.J.'s only actions seemed to be random and jerky. All we knew was there
was a possibility of brain damage, or limitations in his learning
potential. Nobody even guessed the outcome would be hydranencephaly, no
brain tissue development under the skull. That's why C.J.'s head was
larger than normal, the spinal fluid should get absorbed by brain tissue
that was non existent. Therefore, all the fluid filled the empty space.
The delivery was
Wednesday and the CT scan on Thursday. Friday was for my folks, my
brother and both our sisters' families to touch, talk, watch and Love
Chase. The hospital chaplain did a blessing over C.J. and the family
joined in for a very touching ceremony. Saturday was the day for Jacob,
Lauri and I to be alone with Chase. This was our way of telling Jacob of
his brothers present and future situation. How to tell a two-year-old of
this was not easy. Early Saturday morning the NICU nurse watched as
C.J.'s vital signs slipped. She noticed his heart rate slow down and the
way his lungs processed oxygen became less efficient. When we came in
Saturday morning, we even noticed his weight had been dropping since
birth, which led us to our conclusion that 'time' was working against
us. We had to make another quick decision. We had to figure out the
reason that Chase was on the respirator. Was this to allow his body time
to heal, or to make our life easier. Our choice was to not 'force' him
to stay here much longer. That afternoon, after my brother took Jacob,
we made the choice to remove the respirator from C.J. If Chase wanted to
go on living... we would have been there for feeding, loving and
whatever he required. If Chase wanted to go... we would be there to set
him free. This was our choice of how we want to die when our time comes.
He died at 2:15 pm Saturday May 11. The doctors asked if we wanted to
stay at the hospital that night, but we had wanted to stay with Lauri's
sister and family.
This case of
Hydranencephaly was probably caused by a problem in the blood vessels
that stopped the blood from getting to the developing brain tissue. This
accident happened very early in the pregnancy, approximately the first
Trimester but with no answer as to why. If any of the doctor's staff
could have seen into the future as to this outcome, we would not have
had these three days with C.J. The operation would not have taken place
therefore the delivery would have been later and harder on Mom and C.J.
Lauri's doctor said C.J. would probably not have survived a normal
delivery. There had been many separate times at different hospitals that
Hydranencephaly could have been found before delivery. With the use of
ultrasounds, this could detect the brain tissue not developing normally
and these were done almost biweekly since the third trimester. It was to
our benefit that the 1991 technology had hid the real problem with Chase
from us. We have been very busy since we found that Chase had a problem.
These events have
been eased by Lauri's and my faith in God and knowing that C.J. is in
Grandma's waiting arms.
Chase & Jacob
now have a sister who's name is Sheri.
  
The beautiful painting is
the work of
Anne Geddes.

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