When Julia
was about 5 weeks old she woke up with blood all over her face.
I washed her off and discovered the blood was coming from a
tiny scratch on her face. I had also started noticing dark bruises
on Julia's arms and legs. Julia's father and I knew that this
was not normal so we took her to a hematologist who diagnosed
her with Glanzmann's. He tried to prepare us for the kind of
life that lay ahead of us. One of the first things he told us
about this disorder was that Julia should never have children
because of the risks involved. He told us that it was going
to be difficult for Julia when she started to menstruate and
that we'd have to find a way to stop her periods and surgery
would probably not be an option. He warned us of the risks of
daily childhood accidents becoming serious injuries. He made
sure we understood how careful we needed to be. He also wanted
us to realize how rare this disorder was. In 1998, the year
Julia was born, there were only 200 reported cases in the world.
We had a hard time finding any information about Glanzmann's.
We learned
quickly what it meant to have a child with GT. If Julia cried
hard she would get little purple dots on her face (patechia).
Just picking Julia up would leave bruises on her body. It became
difficult for me to leave the house with Julia because people
would stare at us and accuse me of abuse. I used to wonder if
all the bruises were painful, like they would be on a normal
person, she was just a baby and couldn't tell me. I've since
learned that yes the bruises do hurt, but Julia rarely complains.
When Julia was learning how to crawl she slipped and bumped
her eye on our entertainment center. I watched in horror as
the swelling got bigger and bigger and the bruise got darker
and darker. I called Julia's doctor to ask what I should do
and he told me that I needed to ice it down and watch her very
carefully because the swelling could cause pressure on part
of her eye and cause her retina to detach.
Fortunately,
it just turned out to be a very ugly black eye, the first of
many. One day, Julia's brother accidentally hit her in the cheek
with a toy. Julia was so swollen she looked like she had a baseball
in her mouth. It took several weeks for her face to return to
normal.
Immunizations
cause problems with bleeding. We have to make sure she receives
her shots in the skin and not in the muscle for fear of bleeding
within the muscle. Teething caused prolonged bleeding. I worry
about throat bleeds when Julia gets a cough. I worry about what
might happen when it's time for Julia to lose a tooth. I worry
about what might happen when Julia starts her period. I worry
about Julia going to school and playing with other children. I
worry about Julia not being able to play sports. I worry about
things I shouldn't be worried about right now, but can't pull
myself away from my fears.
Julia gets
nosebleeds frequently. That doesn't sound too bad until you've
actually witnessed what is involved with a nosebleed. Usually
it is a continuous flow that requires wiping every couple of
minutes. During the night the bleeding does not stop. While
she is sleeping the blood soaks her sheets and gets matted in
her hair. I've learned to take Julia to the shower immediately
and not let her look at herself in the mirror. Once in the shower
we let the steam work the dried blood off of her skin so it
won't hurt so bad when we try to wash it off.
The first
time I took Julia to the dentist I explained to the him about
her disorder and how we needed to be very careful about not
making her gums bleed. The visit went very well and Julia was
a wonderful patient. The next morning I noticed that something
was wrong with Julia's mouth, her gums were bruised. They were
a dark purple color, almost black on the bottom and top. They
are extra careful when they clean her teeth now.
We learned
the hard way that common antibiotics given for ear infections
cause Julia to have internal bleeds. The internal bleeds that
Julia has had have all been resolved with filtered red blood
cell transfusions. Julia had an internal bleed when she was
2 that frightened me more than I thought I was capable of. It
seemed like a normal day, we'd gone to church and had lunch.
Julia was just a little cranky but nothing else seemed wrong.
After lunch I looked at her and saw that she had no color in
her face, her lips and gums were white. I took her to the ER
and discovered that she had lost a lot of blood, her hemoglobin
was very low and it kept dropping. That night I thought I was
going to lose her. She received a transfusion and eventually
returned to normal but my world changed after that. My husband's
and my other children's worlds changed too. We know how blessed
we are to have each other and the time that we share.
Anytime
I feel myself starting to worry about silly things that really
shouldn't matter and definitely shouldn't cause me any stress,
I remind myself of the real problems my baby is faced with everyday
and I get my thoughts back into perspective. My family and I appreciate
each other and the time we have together. I will never get used
to this disorder and all of the pain and the complications that
will come up throughout Julia's lifetime. I know that God never
gives us anything we can't handle but I sure wish he'd given this
one to me instead of my child.
