Diagnosing von Willebrand disease (VWD) in children younger than 2 is challenging, and data on this population is limited. However, recent research published in Blood Advances has found that infants and toddlers with VWD often have a family history of the disease and experience bleeding within the first year of life.

The prospective study used data from the Centers for Disease Control and Prevention (CDC) Universal Data Collection (UDC) surveillance system established in the US Hemophilia Treatment Center Network (USHTCN).

The researchers collected information on 105 patients younger than 2 years with VWD. A total of 63% of patients had type 1 disease, 28% had type 2, and 9% had type 3.

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A total of 79% of patients had a family history of bleeding disorders, and 68% of patients had diagnostic testing because of a family history of VWD. Patients with a family history were diagnosed about 4 months earlier than patients without (P <.001).

Patients with type 2 disease were more likely to be diagnosed earlier, with 81% of patients with type 2 disease diagnosed within the first year of life, compared with 66% of patients with type 1 and 55% with type 3.

Just over half of patients were diagnosed with VWD before they experienced a bleeding event. A total of 70% of patients experienced a bleeding episode during the surveillance period, with oral mucosa being the most common site (32%), followed by circumcision site (12%) and intracranial or extracranial (10%).

Guidelines suggest that delivery should be performed by the least traumatic method possible when bleeding disorders are present. More than half of infants in the study were delivered vaginally, but the C-section rate among mothers with a history of a bleeding disorder were higher than the national average. About 14% of patients in the study were born preterm, and 13% had low birth weight, proportions that are both slightly above the national average.

Overall, the study added more details to infants and toddlers with VWD, noting that family history plays an important role in diagnosis.


Dupervil B, Abe K, O’Brien SH, et al. Characteristics, complications, and sites of bleeding among infants and toddlers less than 2 years of age with VWD. Blood Adv. 2021;5(8):2079-2086. doi:10.1182/bloodadvances.2020004141