Fetal neonatal alloimmune thrombocytopenia – FNAIT
Fetal neonatal alloimmune thrombocytopenia – FNAIT is a life threatening bleeding disorder that results from the maternal immune response against paternally inherited fetal platelets antigens.
FNAIT affects approximately 1:1000 pregnancies and is the most common cause of severely low platelets in an otherwise healthy neonate.
Fetal platelet destruction puts the fetus/neonate at serious risk of spontaneous bleeding into major organs e.g. intracranial haemorrhage ICH, spinal cord, stomach and lungs.
Clinical consequences of FNAIT span a continuum from no symptoms to petechiae, mucosal bleeding, haematomas, retinal bleeding and hydrocephalus, which may lead to intrauterine death or lifelong disability.
Associated ICH has been estimated to be around 1:10,000 newborns, which equates to approximately 1,000 annual FNAIT-associated cases of ICH in Europe and North America.
Recent research indicates that FNAIT may also cause multiple early miscarriage and intrauterine growth restriction.
Fetal and neonatal alloimmune thrombocytopenia is analogous to the red blood cell disease haemolytic disease of the fetus or newborn HDFN, which has been screened for since the late 1960’s. No country screens for FNAIT.
Without a screening program for HPA‐1a negative pregnant women, primary prevention is not an option. Secondary prevention is only possible in those cases where a woman has previously given birth to a child with FNAIT.
NAITbabies is a small Charitable Incorporated Organisation started in 2011 and registered with the Charity Commission for England and Wales in 2015. As the only patient organisation for FNAIT, we provide support worldwide and a private Parents Support Group, which we run on Facebook. We have several mothers in Northern Ireland as well as several in the Irish Republic. In 2020, we took part in an all-Ireland Maternity and Midwifery Festival held in Dublin, and our NI mums all travelled south to attend.
Support for Families Affected by Neonatal Alloimmune Thrombocytopenia (NAIT)
For parents who have been diagnosed with, or suspect they may be affected by, Neonatal Alloimmune Thrombocytopenia (NAIT), support is available.
The Naitbabies organisation offers a dedicated NAIT support group to provide information, emotional support, and the opportunity to connect with others who have shared experiences.
They can also find updates and support through the group’s Facebook and Twitter pages.
Our son Jaxon was born with rare condition called FNAIT which we were not aware of before birth and wasn’t picked up at any scans or tests. At 37 weeks I went into labour, went to my hospital where I was examined and advised to go home and rest, 36 hours later we ended up having an emergency section due to meconium in my water. When I was rushed in for surgery, I was advised my baby may not cry, move or scream, but Jaxon came into the world kicking, screaming and fighting. We were advised he would be taken into ICU for monitoring to make sure everything was okay. The next day, at 13 hours old we were informed that Jaxon had two strokes and the left side of his brain was either damaged or missing and there was also a large cyst. To say this was a shock as a severe understatement. We were advised that they suspected FNAIT to be the cause presented as a rash on his body and he had also had a seizure at six hours old. The doctors wanted to do further testing and in order to determine FNAIT, it would be a simple blood test from myself and my husband. The results came back and it was confirmed our blood types were different. Therefore my body had been fighting against the fetus during my pregnancy seeing it as an infection that my body had to fight. Jaxon needed three platelet transfusions in the hospital, two of which were found from a donor in Dublin and one in Northern Ireland and we will be forever grateful to the blood transfusion service and the donors for saving our little boys life. Jaxon spent six weeks in HDU, we had a long road ahead of us but Jaxon being the fighter that he is didn’t let anything stop him from achieving his goals. We were told when he was born he wouldn’t hold his head, eat, talk, walk, maybe never roll over but now at 8 1/2 Jaxon has smashed so many small and huge milestones. He has hydrocephalus, cerebral palsy, epilepsy, severely sight impaired/blind in his right eye sensory processing, gastalt language processing and developmental delays but every single day he manages to smile and laugh. he has been through a few operations but comes through the other side bouncing back to his normal self. I then fell pregnant with our second son Alfie in 2019. We consulted with the Doctors and it was advised due to FNAIT would need to undergo treatment from 12 weeks pregnant every Tuesday until our son would be delivered by planned C-section. The treatment involved infusions which would try to prevent any bleeds to our baby boy. We are pleased to say Alfie was born with a platelet count lower than expected but only required one transfusion and overnight stay in HDU, he was back in my arms the very next day but due to Covid we have a five day stay in the hospital. Alfie suffered no internal bleeding and is a very active five-year-old little boy.
Thank you for taking the time to read our FNAIT story and for highlighting it on rare conditions week.
Shannon Cumming, Mother of Jaxon
Rare Disease Groups & Organisations
