Parents of infants diagnosed with fetal and neonatal alloimmune thrombocytopenia (FNAIT) during pregnancy or following delivery may experience myriad feelings, including fear, overwhelm, shock and disbelief.
As a rare disease, FNAIT is often unexpected and not widely known amongst medical professionals or patients, so this diagnosis often comes as a shock.
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 over the wellbeing 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).
Learn more about FNAIT testing and diagnosis
If your baby is suspected of FNAIT post-birth, due to symptoms such as bruising, red or purple skin discoloration, low platelet levels or hematomas, urgent treatment by platelet transfusions is required. A longer stay in hospital is likely as a result. 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 be overwhelming at times, which is why it’s important to lean on your support system.
Managing the psychological impact of an FNAIT diagnosis
Immediately following a diagnosis of FNAIT, you may have little time to process your emotional response, as your baby will need urgent medical care. The main priority is getting the right care for your baby.
However, it is important to take steps to effectively manage the psychological impact of diagnosis on you and your partner.
Staying informed: A lack of information causes anxiety. Ask questions, do your own research 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.
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