Thea founded Naitbabies in 2011 after her granddaughter was diagnosed with fetal neonatal alloimmune thrombocytopenia (FNAIT). She talks about her family’s story and about the incredible work of the charity.

My name’s Thea and I started Naitbabies in 2011 after my granddaughter Senen was born severely brain damaged by intracranial haemorrhages (ICH) due to the rare conditions fetal neonatal alloimmune thrombocytopenia – FNAIT.

My daughter Andrea had a perfect pregnancy but, unknown to us at the time, Senen had bled into her brain before being born. The first bleed occurred at about 37 weeks according to her neurosurgeon. The second occurred after a failed assisted delivery at 40+ weeks. Over 95% of her brain had been destroyed and she was not expected to survive very long. She is now 15 years old. The extensive brain damage has left Senen suffering a multitude of complex medical conditions. She is registered blind, has epilepsy, a valve in her head called a shunt which controls the cerebral spinal fluid, cerebral palsy, fed via a gastronomy tube in her stomach and other disabilities which have required major surgery. She also had precocious puberty requiring monthly hormone treatment from the age of 2.

She does have perfect hearing and loves music, especially Dolly Parton! She attends a special disabled section in a lovely school where we live in Cornwall. All the kids are used to seeing children in wheelchairs and are really interested and protective of them. 

Fetal neonatal alloimmune thrombocytopenia is a severe bleeding disorder caused by the maternal immune response against fetal platelets that have been acquired paternally and not recognised by the mother. Platelets are essential to enable the blood to clot. Blood that contains fewer platelets than normal is known as thrombocytopenia. FNAIT is seen as the platelet equivalent of the red blood cell condition, HDFN – haemolytic disease of the fetus and newborn, or more commonly known as rhesus disease. No country yet screens for FNAIT although HDFN has been screened for since 1969.

Since we started Naitbabies we have had an amazing journey and have been contacted by families and doctors from all over the world. We run a great support group for parents where everyone is very helpful and encouraging. To know you’re not alone and that somebody else knows what you and your baby are going through is a tremendous relief.

There is treatment available for further pregnancies although it may be very stressful. As many health care professionals haven’t hear of FNAIT, we can help find a knowledgeable high risk MFM doctor who can set up a suitable pregnancy plan.

We are now collaborating with scientists who are developing a prophylactic treatment to prevent FNAIT in women who are HPA-1a negative, which is responsible for approximately 85% of cases. We are very excited and hopeful that this will save so many babies lives or suffering lifelong disabilities due to fetal platelet destruction. 

If you have been diagnosed with or suspect that you may have Fetal and neonatal alloimmune thrombocytopenia contact NAITbabies [email protected] 

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