Naitbabies are a patient organisation run by families affected by FNAIT, 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’.

Fetal and Neonatal Alloimmune Thrombocytopenia, known as NAIT FNAIT or FMAIT for short, results from incompatibility between parents for platelet-specific antigens. Resulting in the maternal immune response making antibodies against baby’s blood platelet antigens inherited from the father and absent in mother. It is the most common cause of severely low blood platelets in unborn and newborn babies and can cause of bleeding into major organs such as the stomach, skin or spinal chord. The most feared bleeding is into baby’s brain called Intracranial hemorrhage or ICH.

Studies show that around 1:1000 live births may be at risk and up to 20% of those affected will suffer an ICH which approximates to 63:100,000. Brain bleeds may result in death or lifelong disabilities eg.  hydrocephalus, blindness, epilepsy, cerebral palsy, hormone problems,  motor and cognitive delays.

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!!!!

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Based in the UK Naitbabies are the only registered Patient Organisation for FNAIT. We provide advocacy, support and information and a warm welcome to all sufferers worldwide. Our Board members are all volunteers and receive no salary or government grants. We rely entirely on publicly donated funds to run 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!!!! Very importantly we wish to thank all the research scientists and wonderful doctors who we have contact with and all those that are working to find a preventative treatment that will stop other children from suffering as ours do.

 

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For further information please email info@naitbabies.org

Parents if you have been diagnosed with, or suspect that you may have Neonatal Alloimmune Thrombocytopena and would like to join our private support group please email us here  If you are on Facebook you can send us 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.