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A Mother's Definition

I've been asked to write a brief description of what it is like being the mother of a child with Glanzmann's Thrombasthenia. I don't know if it's possible to be brief but I will attempt it. I have 3 children; my oldest daughter is 11, my son is 4. Julia is the baby she's 3. Julia was born with a rare bleeding disorder called Glanzmann's Thrombasthenia. Several hours after she was born the doctors started noticing some things that were a little different about Julia. Her face was covered in little spots called petechia and her back and buttocks were covered in dark purple bruises. When they did the routine heel stick to run blood tests Julia bled for an unusually long time but the results were all normal. The doctor's weren't too concerned with the bruises and decided they were a result of a rapiddelivery and they didn't need to put her through any more blood tests.  

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.

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