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.
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.
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!!!!
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!!!!
For further information please email firstname.lastname@example.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
FNAIT families take part in the Kiltwalk, Glasgow, Scotland
Two families whose children had FNAIT, took part in the Kiltwalk fundraising eve…
News on our 2018 #FNAIT Midwives Campaign stands (#FMAIT)
Naitbabies have a stand at the Primary Care and Public Health show, the leading…
#RareDiseaseDay 28 February 2018!!!! Read Gillian’s story ‘How #FNAI…
Rare Disease Day!! read Gillian’s #NAIT story in today’s #Guardian n…
Nait bear visits NYC, and spends time with Ethan Jones in Hampshire, England
Nait bear has been part of the NAIT family for a long time so it only seemed rig…
Nait bear visits with the Lindell family for Christmas in North Dakota USA!
Lana Lindell’s family with sons Rhett 6 and Bennett 2 are visited by Nait…
Nait Bear visits New Plymouth, Taranaki, New Zealand home of 3 special little gi…
Hello from the Naki! We were so pleased to host Nait bear, he slept with Amelia…
Primary Care and Public Heath Show – NEC Birmingham 6-17 May 2018
As part of our Midwives Campaign we exhibited a stand at the NEC Birmingh…
Maternity and Midwifery Forum – Earl’s Court, London
Maternity and Midwifery Forum, Earl’s Court, London On February 13 we held…
#FNAIT Awareness Week 25 – 31 March 2018
This week has been our annual call to raise awareness around the world!!!!! This…
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.