Grace Brumfield
Franklinton, La.
Grace
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Grace
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Grace
Coming Home |
My name is Tanna Brumfield. My husband is Frederick.
We live in Franklinton, La. We have had 2 children
with Zellweger Syndrome. They were both little angels
and are now both in heaven. I have one son that is 6
years old. His name is Joel and he is going into
first grade. He was perfectly healthy. So when our
daughter Grace was born sick, it was a surprise. She
was born May 12, 1998. We didn't know anything was
wrong until she was born. She weighed 6 lbs and 10
oz. It was evident at birth that something was wrong.
She was very floppy. Her muscle tone was so poor
that she could not suck much at all. They put her
feeding tube in when she was 2 weeks old. I was
worried during the surgery. I worried that she
wouldn't come off of the ventilator or the oxygen they
had to put her on. But she did fine. She stayed in
the hospital for a total of 3 � weeks before she got
to come home. We didn't get her diagnosis until she
was about 3 months old. All of her blood tests were
sent to Kennedy Krieger Institute in Baltimore,
Maryland. I pumped breast milk for her for 3 months.
That was a job! I had to feed her every 3 hours
through her tube. After I stopped the breast milk,
she was put on Pregestimil. She never had any
problems putting on weight. She, like most Zellweger
babies, had seizures. Grace also had an enlarged
liver. She saw a gastrointerologist that prescribed
Actigall for liver function. It seemed to help
cleanse her liver. She had a pulmonologist that took
care of her also. She went into the hospital 3 times;
twice for pneumonia and once for unexplained fever.
The first time she went into the hospital her
pneumonia was severe. She was about 6 months old.
After that she stayed on continuous oxygen. She was
never able to come off of it. We had to use a suction
machine regularly to clear her secretions. We have to
give her regular breathing treatments. We had a pulse
oximeter to measure her oxygen levels. Grace never
moved a whole lot. At first she would move her head a
little and her feet and arms a little. But gradually,
she didn't move at all. Most of the time she was
sleeping except when she was having seizures. Grace
lived to be 12 � months old. She died on May 28,
1999, two weeks after her birthday party. I knew that
it was coming. I had always had this silent prayer of
"God, don't let it be all of a sudden. Let me be
somewhat prepared." (If you can ever be prepared for
something like that.) A week before she died, she had
a spell where she was not breathing well. I would
have to stimulate her to get her to take another
breath. She finally leveled out and did OK. But I
knew that she couldn't make it much longer. One week
later, she did the same thing. Only this time she was
not really responding to stimulation. I called her
home health nurse and she called the ambulance. We
went to the hospital. When I got there, they were
"bagging" her. They were giving her breaths with an
Ambu bag. But I had a "Do Not Resuscitate" order on
her. I did not want them to put her on a ventilator.
If I did I would only have to decide when to take her
off and I did not want that. Because I knew at this
point that she would not start breathing on her own.
When my husband and I went in I just told them that I
wanted to hold her. So they unhooked everything and I
held her as she took her last breaths. It makes me
sad now to think of it. But she did not struggle at
all. It was as though she was very tired. Every now
and then she would take a big sigh. Then eventually
she didn't take any more breaths. She was very
peaceful.
If you haven't already met Grace's Brother, visit the link below
and read his story.Grace's Brother Samuel's Page
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