A mother’s story about shortcomings in care for bleeding disorders abroad
Finding treatment for two children with factor VII deficiency has been challenging
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The email started with two words: “Good night.”
I understood it right away. It’s what a mother writes when the house is finally quiet, but her mind isn’t.
Her name is Deiralina Morillo, and she lives in the Dominican Republic. Two of her three children, both daughters, have factor VII deficiency. She wrote to me at Girls Bleed Too — the community-focused resource and advocacy initiative that I founded for women and girls living with bleeding disorders — because much of what she knows about their condition came from searching online, Facebook groups, and ChatGPT. It didn’t come from the people treating her children.
I’ve read her message several times now, and I keep coming back to that point.
When her youngest daughter was 6 months old, Deiralina was working from home and found her baby bleeding in her sleep. Deiralina took her to a hematologist, which led to more than a year of prothrombin time tests every three months. The results were abnormal every time, yet she says no one looked into it further. It wasn’t until her daughter needed surgery at age 2 that a cardiologist pushed for more testing.
The result was factor VII deficiency, as her daughter had a factor activity level of 12%. (Normal results usually range from 50% to 200%.)
Deiralina says the diagnosis came with a name (factor VII deficiency), but not much else — there was no explanation of the risks, treatments, or what to do in an emergency.
Numbers don’t always tell the whole story
Factor VII deficiency is inherited when both parents pass along a variant gene. According to the National Bleeding Disorders Foundation, it affects roughly 1 out of every 300,000 to 500,000 people, making it the most common of the rare bleeding disorders.
It also doesn’t follow the rules many of us expect. In factor VII deficiency, factor levels don’t reliably predict bleeding. Some people with very low factor levels rarely bleed. Some with higher levels bleed significantly.
Deiralina’s older daughter is a teenager. She was tested only after her mother reported that her daughter had heavy menstrual bleeding. Her daughter’s factor VII level was 56% — at the low end of normal — but her symptoms still need treatment.
I’ve spent years writing about girls and women whose bleeding is dismissed because a number looks reassuring. This daughter was tested because her mom spoke up about it.
Meanwhile, her youngest daughter waited a full year for the surgery I mentioned earlier. Twice a month, they’d go to the hospital only for the procedure to be canceled the day before because the treatment she needed wasn’t available.
When the surgery finally happened, she bled more than expected, and her condition was reclassified from moderate to severe.
Now she’s losing her baby teeth. Her hematologist has said not to pull them at home because she needs preventive treatment first. Meanwhile, her permanent teeth are already coming in behind them.
Deiralina said she’s been told that only four hospitals in the country care for people with bleeding disorders: two for children and two for adults. To learn whether treatment is in stock at a particular hospital, she has to call or make an hourlong trip.
Her biggest fear is the one every bleeding disorder parent has: What if something serious happens and treatment isn’t available at the hospital? When she asks about that, she says she’s told that doctors will find a workaround. But a workaround isn’t a plan.
What Deiralina wants is specific and reasonable. She wants to know which treatments work, what the alternatives are, which hospital to go to, and what to do when the first choice isn’t available. And she wants it written down, before an emergency happens, not during one.
What every family should leave with
Wherever you live, a diagnosis should come with a plan. Ask your treatment team for:
- Your diagnosis and factor level, in writing
- Your preferred treatment and the backup treatment if the preferred one is unavailable
- Which hospital to go to in an emergency, and who to call after hours
- A letter you can hand to emergency room staff
- A plan for dental work and procedures, made in advance
For families outside the U.S., the World Federation of Hemophilia works with national member organizations that support people with all inherited bleeding disorders, including rare factor deficiencies. In the Dominican Republic, that’s the Fundación Apoyo al Hemofílico.
Deiralina closed her email by saying that her family needs answers, support, and to know that they aren’t alone. I can’t give her every answer, but I can respond to the last part of her request: She isn’t alone.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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