As an infant, Kinzie Hemann bruised easily—even from her parents’ thumbprints whenever they picked her up.
“The doctors just told us that could happen,” says Heather, Kinzie’s mother.
When she was 10 months old, Kinzie had tubes placed in her ears to treat recurring ear infections. Afterward, her parents knew something wasn’t right.
“She bled for weeks from her ears after that,” remembers Heather. “It was terrifying. I didn’t know what was going on.”
Kinzie and her family were referred to the University of Iowa Stead Family Children’s Hospital Hemophilia Treatment Center for blood tests. A few days after her first birthday, Kinzie was diagnosed with von Willebrand disease type 3, a very rare genetic disorder.
People with von Willebrand disease are missing a protein in their blood that allows their blood to clot. When Kinzie bleeds, she needs to receive a clotting protein to make it stop.
One particular episode was very serious.
“She bled all day, even with the factor (protein given), and at night she was getting lethargic,” remembers Heather. “She was extremely out of it.”
Heather and Josh called Kinzie’s care team, who told them to come to UI Stead Family Children’s Hospital immediately.
“It was the scariest day of my life. I’ll never forget it,” says Heather. “She was kind of lifeless [when we got to the hospital].”
Kinzie was admitted to the Pediatric Intensive Care Unit. Because she had lost so much blood, her veins were harder to access, resulting in more than 20 failed attempts to insert an IV to give her the protein she needed.
“The next morning, we talked with her team about finding some other way for access,” remembers Kinzie’s father, Josh.
It was decided that a port, placed in Kinzie’s chest, would be the best option. It directly connects to a vein, so an IV can be placed into the port rather than through a difficult vein in her arm or leg.
Thanks to her port, Kinzie was able to receive her missing protein regularly, resulting in fewer spontaneous bleeding episodes. Each year, the Hemanns even have a birthday party for Kinzie and her port to celebrate how much it’s impacted her life.
“It’s been a great thing for us,” Josh says. “It’s made life a lot easier for her to get used to and for us to adjust.”
This past year, at a hemophilia camp sponsored by UI Stead Family Children’s Hospital, Kinzie reached a major milestone when she received the “big stick award” for accessing her veins herself.
Bleeding disorders are especially rare in girls, so Kinzie comes back to UI Stead Family Children’s Hospital for annual visits, and the family consults with their care team as new bleeds arise. Both of Kinzie’s siblings, Jayla and Milo, have a milder form of the disease as well.
Through it all, 7-year-old Kinzie hasn’t let anything hold her back. She loves basketball, soccer, and even break dancing.
“When they told us that the odds of having type 3 von Willebrand’s was about one in a million, we thought, ‘That’s about right. That’s Kinzie,’” says Josh. “We have always felt she’s one in a million.”