Ask a Social Worker: How Can I Advocate for My Child with Hemophilia so He Gets the Care He Needs?

Ask a Social Worker: How Can I Advocate for My Child with Hemophilia so He Gets the Care He Needs?

Advice for parents of children with bleeding disorders on how to navigate emergency room visits.

Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].

Dear Kathaleen,

I have an 18-month-old son with severe hemophilia A. How do I get doctors and hospitals to take my concerns seriously? We’ve had several instances where the triage nurse at the hospital’s emergency room didn’t think a muscle bleed was a serious concern because there was no outward bleeding. We’ve also seen doctors who were unwilling to administer factor until after scans had been completed—completely ignoring the advice of my son’s hematology team. How do I fight so my child gets proper care?


Olivia Mozingo


Dear Olivia,

This is a concerning barrier that so many people within our community are facing. Unfortunately, many parents encounter emergency room (ER) staff who are not familiar with bleeding disorders because these conditions are so rare. As you mentioned, internal bleeds can be overlooked and not recognized as a serious concern because of the ER staff’s knowledge deficit. Knowing this doesn’t help any existing anxiety prompted by an ER visit, let alone having to overcome these barriers to get prompt care for your child.

Developing an emergency plan or adding to your existing one is essential for advocacy at the ER. Here are some tips on what you can add to your advocacy toolbox:

Additionally, there are opportunities for advocacy, education and relationship building with the ER staff before an emergency. You can call your hospital’s director of emergency medicine or the ER charge nurse to request a meeting to make them aware of a child in their service area who has a bleeding disorder, and you can provide them with copies of your emergency letter and the MASAC documents. Ask them how they can support you and your child in getting necessary and prompt care.

You can also contact your HTC social worker for guidance, and help connecting with other families within the bleeding disorders community. These parents can share their own successes in navigating life with a child who has a bleeding disorder, including their hospital experiences.

To find other MASAC recommendations and advisories for the bleeding disorders community, visit the NHF website. Another great resource is NHF’s Steps for Living site, which has a section on ER visits.

Olivia, I hope you can add some of these ideas to your toolbox, and I encourage you to continue your advocacy efforts. Keep talking, keep educating, stand firm and be heard. Don’t forget to rest and take care of yourself; this isn’t easy. Stay well.

—Kathaleen M. Schnur, LCSW

Schnur is a social worker at the Hemophilia Center of Western Pennsylvania in Pittsburgh and a member of the Social Work Working Group.