By UNIVERSITY OF IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — When Garret Schuster (Epworth, Iowa) was 9 months old, his parents, Heather and Dan, took him to a local pediatrician for an ear infection. The doctor immediately noticed bruises on Garret’s body.
“We lived in the country, so he was outside playing a lot. We were noticing the bruises, and I just thought it was because he was an active little boy,” recalls Heather.
The pediatrician ordered lab tests for Garret.
“Just from the tourniquet being on his arm (for the blood test), he had a soft tissue hematoma, which is a big, deep bruise from his elbow to his armpit,” says Heather. “That’s pretty alarming for a mom to see that on their little one.”
Garret was referred to University of Iowa Stead Family Children’s Hospital to meet with pediatric hematologists. Upon further testing, Garret was diagnosed with von Willebrand disease — a genetic bleeding disorder in which a key clotting protein is defective or missing.
“He lacks the sticky stuff that holds a blood clot together,” explains Heather. “If you think about it like building a brick wall, he has the bricks, but there either isn’t enough mortar to build the wall, or the mortar isn’t that sticky.”
There is no cure for von Willebrand disease, so Garret takes medications and undergoes regular IV infusions at home through a port in his chest. Despite years of treatments, however, Garret was still experiencing frequent bleeding. Through bone marrow biopsies, additional blood tests, and genetic testing, he was also diagnosed with two nonspecific platelet disorders.
“His platelets are smooth like glass instead of bumpy, so nothing sticks to them. They also don’t send out protein receptors to make a clot,” explains Heather. “Through the genetic testing his hematologist fought so hard to get done, we found out Garret has a rare genetic disorder called GATA1, where the cells in his bone marrow don’t produce enough platelets.”
Because the combination of his conditions is so rare, Garret and his family have participated in several clinical trials.
“It’s very important because there’s always something new to be learned, and without the research projects, the learning would stop,” says Dan.
“There was a research study going on at the University of Iowa and they would test the whole family to see who else maybe had (it) because von Willebrand disease is hereditary. Through the testing, we found out that Garret’s dad has von Willebrand disease and that’s where Garret got it from,” explains Heather.
One of the biggest issues Garret still faces is extreme nosebleeds that can last between six and 12 hours.
“It’s like you turn on a faucet with his nose, so that’s required us to come to the children’s hospital and have cauterizations in his nose,” says Heather. “They can take hours because each of those blood vessels are so tiny, especially in a little kiddo, (so doctors) go in and patiently and painstakingly cauterize those blood vessels to try to get the bleeding under control.”
Heather adds an important reminder, “It’s really important for people to donate blood products. Those donations help so many people in so many different ways. Without blood donors, my son, as well as many children, wouldn’t have the quality of life that they have and be able to live as fully as they do.”
Garret’s condition can limit him from many activities, but he’s found an outlet in dancing. He’s been a competitive dancer for three years, and loves tap, jazz, and ballet.
“When I get frustrated and mad because of all the bleeding disorders that I have, I take all that anger and emotion and put it into my dance,” says Garret.
The Schusters are grateful to Garret’s care team, which has gone above and beyond to help him.
“The hematology team at UI Stead Family Children’s Hospital has endlessly and tirelessly worked toward getting answers,” says Heather. “His hematologist reached out to other scientists and professionals worldwide to try to get answers to help Garret. She never quits thinking about him.”