Samuel was born on July 6, 2000. Zellweger
can be detected during pregnancy with an
amniocentesis. But I chose not to have one done. It
wasn't going to change anything. So we did not know
until he was born that he also had the disorder. I
knew immediately when he was born. He had a weak cry
just like his sister, Grace. From the beginning he
moved a lot more than Grace did. And in the beginning
his seizures weren't as severe. He started seizure
medication when he was about 2 months old. Samuel
would kick and smack his lips, even though he did not
take anything by mouth. Samuel was just 4 days old
when they put in his feeding tube. He also had a
Nissen Fundoplication to keep him from refluxing. The
Nissen is where they loop his esophagus to keep reflux
down. He did well in his surgery, too. He stayed in
the hospital for 2� weeks before he came home. He was
much livelier than Grace; kicking and fussing when it
was time to eat. He seemed to be so much stronger
than she was. He originally was taking Nutramigin
formula. When he was about a month and a half he
began to have blood in his stool. Grace never had
this. Samuel began to have trouble gaining weight.
We switched him to Pregestimil because Grace had done
so well on it. It made things worse for him. It
seemed that everything went straight through him. His
gastrointerologist, the same doctor we had for Grace,
finally diagnosed him with "Dumping Syndrome". This
is where the stomach releases it's contents quickly
instead of slowly. He wasn't keeping anything in his
system long enough to gain any weight. The "Dumping
Syndrome" was caused by his surgery. Not the g-tube
placement, but the Nissen Fundoplication. He
explained that when they do that particular procedure,
it sometimes messes up nerves in the stomach,
therefore, causing the dumping syndrome. It can't be
fixed, but we treated it by adding corn oil and cereal
to his feedings. That was one of the good things
about the feeding tube; we could add as much cereal as
we needed. Of course, if you added too much, it could
stop up the tube. After we began to add these things
to his feeding his weight began to pick up some. He
was also put on the formula Neocate. He still never
weighed as much as Grace did, though. He was always a
few pounds behind all of her records. Samuel was in
the hospital 2 times not counting when he died.
Samuel also had the blood clotting factors and had to
take Vit. K shots. Grace didn't. He went in both
times for pneumonia. He usually stayed 5-7 days. We
had a wonderful pulmonologist. He always took care of
Samuel in the hospital. He also took care of Grace.
Samuel had finally reached about 11 pounds when he was
7 months old. He passed away on March 12, 2001. He
was 8 months old. He just began breathing very fast.
Gradually his breathing slowed down. We took him to
the hospital at about 2:00 in the afternoon. I knew
that he was not doing well. He died later that night
at about 11:00. He would also take "sighing" breaths.
I just held him until the end. When Samuel was born
I really thought that he would live longer than Grace
did. I just thought he was stronger. I guess we
never know. But really none of us know how long we
will live, do we?
Grace and Samuel's sicknesses and deaths were very
difficult to go through. We have made it only by the
grace of God. It has always been His strength and not
our own. I don't know why we have had 2 sweet
children to precede us in reaching heaven. But I do
know that their lives had a purpose, even as short as
they were. I pray that Grace and Samuel's lives have
touched someone and made a difference in his or her
life. I know they have touched our lives and we will
forever be changed.
Tanna and Frederick Brumfield
(Mom & Dad)
If you haven't already met Samuel's Sister, visit the link below
and read her story.
