Aimee’s life story

Aimee’s story is told by her mum Suzanne.

‘My daughter, Aimee, died in January 1997, aged 5 years.  She died from B Cell Lymphoma driven by the Epstein Barr Virus as a direct result of, what could only be described at the time, as ‘leaky SCID’.

Aimee had been poorly almost since birth.  Within 24 hours she developed a rash all over her body and would sweat profusely when she tried to feed.  She also started with a cough when she was approximately 6 weeks old.  At 5 months of age she was admitted to Royal Manchester Children’s Hospital with what was later diagnosed as Cytomegalovirus. 

Within those first 12 months of her life she was admitted to hospital 6 times, each time for at least 2 weeks and it was then that a primary immunodeficiency was suspected.  Unfortunately, due to there only being 2 centres in the UK with specialised paediatric knowledge of PID, Aimee was treated by a Consultant Paediatrician at our local general hospital and it wasn’t until she contracted chickenpox aged 5 which then set off a chain of tragic events leading to her developing B Cell Lymphoma.

Aimee was admitted to Booth Hall Hospital on November 22nd 1996, was diagnosed with Lymphoma on 29th November and admitted to ICU on 1st December.  In her notes from the 1st December, Dr Will Consultant Haematologist wrote ‘so much to do, so little time’.  He recognised that Aimee had a very severe form of immunodeficiency and that she should be under the care of either GOSH or Newcastle, however by that time she was too sick to be moved.

All of Aimee’s notes were sent by taxi to Newcastle and were reviewed by Dr Andrew Cant whose professional opinion was that Aimee had a ‘leaky SCID’ which should have treated by a bone marrow transplant (BMT) at birth.  A BMT was carried out at the beginning of January 1997, however Aimee was too poorly and she never recovered.

It is my strong belief that if newborn SCID screening had been in place when Aimee was born then it would have been detected that Aimee had a complex immunodeficiency and she would have received timely and appropriate treatment, possibly resulting in saving her life.

Obviously for me the most important outcome that this screening could have had for my family is that my daughter could have been alive today, thus avoiding Aimee’s suffering and also the devastating effects that grief have had on Aimee’s father and I and also her brother.

For the NHS and the government though, screening at birth (hopefully picking up immunodeficiencies early) would have saved hundreds of thousands of pounds and valuable resources both human and material.

It does not make any financial sense to me why this newborn screening would not be implemented and it certainly does not make any humanitarian sense for it not to be implemented.’

Posted July 2017