Quinn Kennedy
Western Suburb of Cleveland

My son Quinn was born with Glanzmann’s Thombasthenia (GT). About 24 hours after he was born, our pediatrician was concerned with the petechia and severe bruising over his back and legs. She admitted him to the NICU to be examined. In the NICU they found a hemorrhage in the left ventricle of his brain. They also determined that Quinn had lost a significant amount of blood at some time during late pregnancy or childbirth through the umbilical cord and into me.

They called this a fetal-maternal transfusion. While in the NICU Quinn remained strong and stable; he recovered from this trauma after birth and was discharged after 5 days. In all other ways Quinn was a “normal” newborn. He ate well and gained weight quickly. I had noticed some pink in his diaper and some tiny oozing from his nose after I brought him home from the hospital, but was told that could be “normal” for some newborns. When it was time for his 2 month check-up and first immunizations, our pediatrician again had concerns over the continued bruising and petechia. She sent us to a Pediatric Hematologist and there Quinn was diagnosed with GT at about 7 weeks old.

Of course the GT diagnosis was very difficult for my husband and I to comprehend. Also, because GT is so rare, it was difficult for the doctors to give us any idea of what this diagnosis meant for Quinn and his future. The first few months after he was diagnosed we really did not know what to expect. After finding the Glanzmann’s website and reading other family’s stories, I began to get a better idea of how Quinn might live and manage his GT throughout his life.

So far, at age two Quinn has had many minor bleeding episodes which we were able to manage at home with ice, pressure and Amicar syrup.

He has also experienced a few more serious which required infusion of Novo-7 (recumbent factor VIIa); including a joint bleed in his knee which causes him to stop walking for about 3 weeks. He has not yet required platelets or other blood products. Although I am thankful most of his bleeds have been “minor”, we worry so intensely each time he bleeds. I worry about how long he will bleed, how long is too long? I worry about depleting his iron stores and causing low hemoglobin. I worry about making the right decisions regarding his treatment. When should we infuse or might the treatment cause more trauma? And will I know what to do if his life is ever in danger? We also struggle with allowing Quinn the freedom to explore and develop as all two year olds should, while keeping him safe from falls and accidents. I do not want GT to hold him back, but I want to teach him that he needs to be a bit more careful than other kids.

Quinn has always been a very active boy. He began walking around our furniture at 7 months old and walking unassisted by 8 months. Now at age two, he is rambunctious and full of energy. He loves to run, ride bikes, swim and play ball. He wrestles around with his sister and our 80 lbs family dog. He dances and laughs and loves music and movies. He amazes us everyday with the things he says and does. My hopes for Quinn’s future are that his GT remains manageable and that it never keeps him from the many joys of life.

Written by: Tamira Kennedy (Quinn’s Mom)
Email Tamira

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