Naitbabies are a small patient organisation run by families affected by Fetal and neonatal alloimmune thrombocytopenia #FNAIT (#NAIT #FMAIT). This is a rare and serious genetic disorder of the blood platelets that most people have never heard of including, surprisingly, many obstetricians and midwives. Diagnosis is often not made until the second, third or even forth pregnancy. The possibility of FNAIT being dismissed by clinicians as ‘too rare’ and bruising as ‘birth trauma’ or ‘just a rash’.

 

FNAIT results from incompatibility between mother and baby for platelet-specific antigens. Resulting in the maternal immune response making antibodies against baby’s blood platelet antigens inherited from the father but absent in the mother.

 

It is the most common cause of severely low blood platelets (thrombocytopenia) in an otherwise well neonate and may cause bleeding into major organs such as the stomach or spinal cord. The most feared bleeding is into baby’s brain called intracranial hemorrhage ICH.

 

 

 

Affecting around 1/1000 the true figure is unknown due, in part, to misdiagnosis and under-diagnosis. Frequently thrombocytopenia is mild and the affected baby remains largely asymptomatic and therapeutic interventions are not indicated. Baby’s with severe thrombocytopenia may exhibit hemorrhaging into major organs such as the spinal chord or stomach at or a few hours after delivery. ICH may lead to death (10%) or long term disability (20%) of affected babies, which approximates to 63:100,000.

 

Neurological disabilities caused by ICH include hydrocephalus, cortical blindness, epilepsy, cerebral palsy, precocious puberty, motor and cognitive delays.

Recent research has indicated that miscarriage, Inter uterine growth restriction (IUGR) and retinl damage is also associated with an FNAIT diagnosis.

 

 

Treatment for further pregnancies is available. If subsequent pregnancies are untreated there is a risk that future platelet counts may get progressively worse. Although stressful, weekly IVIG infusions (with or without corticosteroids) have an extremely high success rate.

 

 

 

FNAIT is the platelet equivalent of the red blood cell disease HDFN or rhesus disease,  which has been screened for since the late 1960’s. No country screens for this condition although it is very well documented and has been since the 1950’s.

Much rarer diseases are screened for – Antenatal screening for FNAIT should be standard and routine!!!!

Based in the UK Naitbabies are the only registered charity for fetal and neonatal alloimmune thrombocytopenia.
We run a worldwide support forum for parents and a warm welcome to all FNAIT sufferers.
Naitbabies support research into a prophylactic approach to treating FNAIT being developed by scientists in northern Europe. Similar to Rh immune globulin which has proven safe and effective in almost eliminating the related condition HDFN.

We rely entirely on publicly donated funding and our Board members are all volunteers. We are very grateful for each and every penny/dime spared and use it wisely!!! We may be small but we are mighty in heart!!!!

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For further information please email info@naitbabies.org

If you have been diagnosed with, or suspect that you may have Fetal and neonatal alloimmune thrombocytopenia and would like to join our private parents forum please email us here

If you are on Facebook you can send a private message via our public facebook page here and our admin team will get back to you.

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Naitbabies is a Member of

Rare Disease UK

Australian NAIT Registry

Australian NAIT Registry

PROFNAIT Project

PROFNAIT Project

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Note:
Research and treatment protocols are ongoing.

Always consult a qualified medical specialist in this field. Cases of neonatal alloimmune thrombocytopenia should be managed in specialised Fetal Medicine Units.

We are not medical doctors. All references and materials are for educational and information purposes only.