Naitbabies are a small Charitable Incorporated Organisation run by families affected by the genetic disorder FNAIT Fetal and neonatal alloimmune thrombocytopenia, a life threatening bleeding disorder that results from an incompatibility between parents for platelet-specific antigens.

This mismatch causes the maternal immune response to produce antibodies against antigens that are inherited from the father and absent in the mother.

Although well documented most people have never heard of FNAIT 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’.

 

Pathogenesis of fetal and neonatal alloimmune thrombocytopenia (FNAIT)

 

Neonatal alloimmune thrombocytopenia affects 0.1% of births, with maternal antibodies crossing the placenta as early as 14 weeks’ gestation

 

It is the most common cause of severely low 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 the baby’s brain – intracranial hemorrhage ICH.

 

 

 

Affecting approximately 1;1000 babies 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. Intra-cranial hemorrhage may lead to death (10%) or long term disability (20%) which approximates to 63:100,000 babies.

 

Signs of thrombocytopenia in a neonate are ICH, petechiae, ecchymosis, hydrocephalus, and bradycardia.

Milder visible signs (left) are not an indication of severity of platelet destruction and are often wrongly dismissed as bruising due to ‘birth trauma’.
There may be no external signs evident.

 

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

Recent research has indicated that miscarriage, inter uterine growth restriction (IUGR) and retinal 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 – 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 we are the only registered ‘not for profit’ for fetal and neonatal alloimmune thrombocytopenia and we offer a support network and help to sufferers worldwide.

We support research into FNAIT, its causes, treatment and prevention.

Naitbabies rely entirely on publicly donated funding. Our Board members are all volunteers and 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

 

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Naitbabies are members of
GA-UK and Rare Disease UK.

Rare Disease UK

Australians please register with
the Australian NAIT Registry below.

Australian NAIT Registry

For the current status of plasma collection
see The PROFNAIT Project link below.

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.