Daniel, Eliza & Luke

Our three children, Daniel 6 years, Eliza 2 years and Luke 9 months, all have Glanzmann's. Although this disorder is found in those who have married relatives (consanguineous), my husband and I are not related to each other as far as we know.We do share the same Dutch ethnicity, however. Our saga begins in 1996 when our oldest son Daniel was born. After a normal labor and delivery, Daniel was covered with bruises on his back and petechiae in his groin. At the time, we were told it was from trauma related to the birthing process.

After his circumcision he oozed blood for about 4 hours. At his 2 month checkup, he had his immunizations. I took him home and noticed that his pants were blood soaked. That incident got us a referal to our hematologist who ordered blood work. The results were disappointing, but it was a relief to finally have a diagnosis.

Daniel has been hospitalized many times for nosebleeds, the first one at 2 years. I didn't see any bleeding, but noticed black, tarry stools. Platelet transfusions have worked every time except once. Besides the occasional nosebleed, his gums bled when his teeth came in. Many times blood goes down his throat and thus, I don't know he is bleeding. Sometimes it is very difficult to manage a nosebleed. We have had nasal cauterization, packing, novo7, fobrin glue and 2 platelet transfusions for one episode. The bruising is mostly cosmetic. I have noticed that if he bruises his joint that it is very painful for him. He even refuses to walk if he has injured his knee or ankle. X-rays have determined that thes were just soft tissue injuries. Well-fitting shoes help keep him from twisting his ankle. Additionally, recently he has incurred his first GI bleed. This was also resolved with platelet transfusion.

I have learned to asses him very carefully. His color and activity level, also his odor as GI bleeds stink. I check his nose and throat every day. We try to raise him as normally as possible. He is a friendly, outgoing little boy and takes all this bleeding quite well. At home I have Amicar and neosynephrine on hand, to use as needed. He also takes iron orally. Although the stress of living with a chronic condition can be overwhelming, we've made it so far- and I am still sane! Our other 2 children also are afflicted, but fortunately don't have a big history yet!

---

Updated January 2008:

Daniel was diagnosed with Glanzmann's thrombasthenia (GT) at nine months. This is a rare blood disorder in which the platelets do not function. The manifestations in Daniel werebruising, nosebleeds, joint bleeds and gastrointestinal bleeds. As Daniel grew older, his nosebleeds and gastrointestinal bleeds becaome so severe that he would go into hemorrhagic shock-- even with platelet transfusions.. He spent a lot of time in the hospital in different areas- the ER, OR, ICU and the pediatric floor.

Daniel was referred for a bone marrow transplant at the University of Michigan. His transplant date was January 25,2005. Pfizer medicines were used in both conditioning and post transplant. Now that Daniel is cured of his Glanzmann's and has survived the transplant, he is a normal boy. He is able to attend school and play in gym. He can vacation with his family.

Before the transplant, he would bleed for no apparent reason--so he needed to be near a hospital at all times. It was a stressful, difficult way to live for the whole family.

Because Daniel has required so much care during and after hospitilization, his two younger siblings- who also have GT were frequently left with grandparents. Our church community provided meals and coworkers sent Daniel gifts during his hospitilization.

Email Elise