For a new or expecting parent, a diagnosis of fetal and neonatal alloimmune thrombocytopenia (FNAIT) is often followed by myriad emotions.
Parents who experience a diagnosis of FNAIT during pregnancy or following delivery may experience feelings of fear, overwhelm, shock and disbelief. These feelings could even include thoughts of guilt or blame, though of course, parents are not responsible for this rare disease.
As a rare disease, FNAIT is often unexpected and not widely known about, even amongst medical professionals.
What is FNAIT?
Fetal and neonatal alloimmune thrombocytopenia (FNAIT) is a rare but serious condition that affects 0.1% of pregnancies in which a pregnant mother’s immune system produces antibodies against the platelets of her fetus. This occurs when a fetus inherits platelet antigens from the father that are not compatible with the mother, typically involving a protein called human platelet antigen (HPA). The mother’s immune system recognizes the fetal platelets as foreign, attacking and destroying them, leading to low platelet levels (thrombocytopenia) in the fetus or newborn.
Reacting to an FNAIT diagnosis
Diagnosis during pregnancy can create stress and anxiety, or even a state of constant worry for the well-being of your growing baby. Close monitoring of your baby’s health means additional hospital visits, ultrasounds and blood tests. You may also need to receive weekly treatments of intravenous immunoglobulin (IVIG) with or without corticosteroids to help delay the onset of severe thrombocytopenia and prevent complications such as intracranial hemorrhages (ICH).
If your baby is suspected of FNAIT post-birth, due to symptoms such a bruising, red or purple skin discoloration, low platelet levels or hematomas, urgent treatment by platelet transfusions will likely be required, in addition to a longer hospital stay.
This unexpected diagnosis following delivery can cause shock and confusion. Your baby may need to spend time in the NICU, and you and your partner will need to quickly adapt to new surroundings and understand your baby’s medical needs. This can seem overwhelming or isolating at times, but know there are others who have gone through similar experiences with FNAIT and have emerged on the other side with a healthy baby.
Read more about helpful links and resources for FNAIT
Managing the psychological effect of an FNAIT diagnosis
Immediately following a diagnosis of FNAIT, you will have little time to process your emotional response, as your baby will need urgent medical care to treat the potentially life-threatening consequences of FNAIT. The main priority is getting the right care for your baby.
However, it is important to take steps to effectively manage the psychological impact on you and your partner. These could include:
Staying informed: A lack of information causes anxiety. Ask questions, go online and find out as much as you can from your healthcare team.
Sharing the burden: You and your partner may be struggling with the emotional burden of an FNAIT diagnosis. Lean on each other as much as you can, but also ask for help from family and close friends.
Taking a break: Know when you need to take time out to clear your head. A short break will be beneficial, allowing you to regroup and continue coping with the challenges of an FNAIT diagnosis.
Staying focused on the best outcomes for your baby will help channel your anxiety into positive action. However, once you have managed the immediate response, you may feel the need to seek help from a therapist to help talk about your experience.
If you do find yourself overwhelmed with negative thoughts or thoughts of harming yourself or someone else, please don’t hesitate to call or text the 998 Lifeline by dialing 988.
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