If you’re affected by fetal and neonatal alloimmune thrombocytopenia (FNAITFetal and neonatal alloimmune thrombocytopenia A rare condition in which a mother’s immune system attacks fetal platelets, leading to dangerously low platelet levels before and/or after birth.) and find yourself in the emergency room, there is a chance that your health care provider might not be very familiar with the disease.
Being prepared to clearly and quickly communicate your history can help make sure your visit goes more smoothly.
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Make a script
You might find it helpful to create a short script to recite to your doctor or nurse. Briefly explain to them what FNAIT is: an immune disorder that develops when the mother’s immune system produces antibodies that attack and destroy the baby’s platelets.
You should also alert your providers to the serious risks associated with FNAIT, such as severe bleeding (including intracranial hemorrhageBrain bleed Bleeding inside the fetal brain, also known as an intracranial hemorrhage. In FNAIT, it's often caused by severe thrombocytopenia and can lead to long-term disability or death. ) and neurological damage.
This can be a lot of information to remember, especially if you are already in a high-stress state. Don’t worry about trying to memorize every detail. You can also write down the specifics in a document that you can refer to during your visit or provide a copy of to the medical professionals.
Read more about FNAIT causes and risk factors
Describe your history
If you know your and your baby’s human platelet antigenHuman platelet antigen Proteins found on the surface of platelets. Incompatibility between maternal and fetal human platelet antigens can trigger FNAIT. (HPAHuman platelet antigen Proteins found on the surface of platelets. Incompatibility between maternal and fetal human platelet antigens can trigger FNAIT.) status, that can be very helpful for the team to know. If they need to administer a blood transfusion, they might try to find blood products that don’t carry the protein that the mother’s immune system is attacking. These are called HPA-matched platelets.
You should also tell them how many weeks pregnant or postpartum you are to help them determine your risk level.
Be ready to provide details on any prior pregnancies as well. Knowing how previous FNAIT-affected pregnancies were managed can help the emergency room team to make a care plan that is best suited to your unique situation.
Prepare your documents
If you are actively experiencing a medical emergency, don’t spend time putting together your medical records. That information can be sorted out later.
However, if you’re trying to plan ahead, you can put together a folder with your most important medical details for the emergency room to know. This might include:
- Test results.
- Hospitalization or discharge notes.
- List of medications.
- Letters from your doctors.
Advocate for yourself
After you describe your history and provide all of the necessary information, the emergency room providers may consult with a more specialized professional. You might also be transferred to hospital-based obstetric services.
If, at any point, you feel doubts, don’t be afraid to advocate for yourself. Ask if you can talk to a maternal-fetal medicine specialist or other doctor who has experience managing high-risk pregnancies. Standing up for yourself can be hard, but it can make all the difference in your and your baby’s comfort and safety.
