The mother of Andres explains how her son was diagnosed with hemophilia and offers advice to parents of newly diagnosed children.
While many infants with an inherited bleeding disorder are diagnosed immediately at birth, little Andres was not.
At about 6 months of age, Andres had an egg-sized hematoma on his chest which Maureen guessed happened when Andres rolled over on his pacifier. She took him to the pediatrician — not the usual doctor they had seen — but the one who was available.
“I remember the pediatrician asking specifically, if anyone in our family had a bleeding disorder and I answered no. Neither my husband, nor me, had any indication or any memory of anyone ever having some kind of bleeding disorder.”
This led to a few more questions from the doctor.
By the time the doctor visit was over, and based on the injury and the lack of any family history of hemophilia, the pediatrician felt Andres might be in danger. (Something doctors are required to report to authorities.) Because Maureen was a stay-at-home mother, Child Protective Services (CPS) was called and a case officially opened. It’s not something Maureen ever expected when she walked into the doctor’s office that day.
“We felt lost, confused, angry and sad all at the same time.” Maureen said.
About a month later, once testing proved Andres had hemophilia, the CPS case was dismissed.
We asked her how Andres’ diagnosis had affected her and her extended family.
Andres, now three and a half years old, has severe hemophilia and is infused twice a day — every 12 hours. That’s more often than many others with hemophilia will need. That’s because Andres has what’s called an inhibitor which makes his body reject the medicine they give him. For that reason, Maureen has to give Andres infusions more often along with another medication to help prevent rejection.
Maureen and her husband also have a daughter who is three years older than Andres.
Her advice for parents, especially those whose children are newly diagnosed, is to reach out and network with other families who can provide needed support.
“I have found that meeting other moms and parents of children with hemophilia makes me feel less of a weirdo! When we attended our first bleeding disorder conference in 2013 and we met all the other parents and caregivers of bleeder babies I almost felt relieved that we weren't the only ones! To hear others people’s stories makes us feel normal of what we go thru on a day to day basis.”
The Nevada Chapter of the National Hemophilia Foundation offers a number of support groups, including groups for families of newly diagnosed children. For additional information on support groups or any other services and benefits provided by NHF Nevada, please call (702) 564-4368 or email Anne at email@example.com
The process is easy. Simply fill out the online vehicle donation form on the national website or call 1-855-NHF-4-CAR. Your vehicle (running or not), is picked up free of charge, sold for you, and a portion of the proceeds come directly to the Nevada Chapter of the National Hemophilia Foundation (NHF-NV).
This unique giving opportunity not only helps you clean out your garage but also supports our mission to fund vital research and provide key educational programs and public policy initiatives for people with bleeding disorders.
Help to support comprehensive hemophilia care in the state of Nevada.
Assist with ensuring emergency factor availability in hospitals statewide
Sponsorship of educational programs for consumers and healthcare providers
Sponsor youth ages 7-17 to Hemophilia Summer Camp
Distribution of educational materials Publish informational newsletter
Assist clients with insurance denials and reimbursement problems
Host Consumer Social Events such as picnics and Holiday Parties
Telephone peer support network and youth group
• Improve consumer and healthcare provider education about inherited bleeding disorders
• Promote and support comprehensive hemophilia care in Nevada
• Raise the awareness of bleeding disorders
• Serve as a resource center for distributing educational and informational materials
• Diminish geographic and insurance/reimbursement barriers to receiving adequate care
“To improve the quality of care and life for people with hemophilia, von Willebrand disease and other inherited bleeding disorders, through education, peer support and advocacy.”