Stop the unnecessary deaths of babies. Include SCID in the UK new-born screening programme!
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This is our son, James, who lost his fight with life on the 18th February 2017, 5 days before his first birthday because he had Severe Combined Immunodeficiency (SCID).
James was born a beautiful healthy baby on 23rd February 2016. When James was 8 weeks old he developed a cough after having his immunisations. He was initially treated in hospital for 6 days with pneumonia. Over the following week James did not improve and after several visits to our GP, James was readmitted to Hospital where he became increasingly poorly, having seizures, requiring more oxygen support and laid on the bed unable to move. After two very distressing and frustrating weeks of doctors telling us James just had a chest infection and epilepsy, they finally admitted that they didn't know what was wrong with James and that he needed to be ventilated and moved to another hospital on the Intensive Care Unit. James was moved to Addenbrooks hospital and following a diagnosis of Severe Combined Immunodeficiency (SCID), he was transferred again to Great Ormond Street Hospital.
SCID is the name given to a group of rare disorders which cause severe abnormalities of the immune system. This happens when white blood cells, responsible for fighting infection, are missing or working poorly, resulting in serious and often life threatening infections.
James was on a ventilator for 3 weeks and doctors were concerned he wouldn't survive as his body was being destroyed by infections. But James proved he was a fighter and eventually he came off the ventilator and was able to breathe all by himself. We were finally able to hold our little boy again!
A bone marrow transplant offers the only long term cure for SCID at present. But James was too poorly to have the chemotherapy that went alongside the bone marrow transplant and didn't have the time to wait for a matching donor. So James's daddy donated his T-Cells on the 4th July 2016 and these were infused into James in the hope they would engraft and create part of an immune system over the following 6 months. When James gained some strength and weight we were able to bring him home and join the rest of our family, who we missed so dearly after being in Great Ormond Street for 3 months. James still had no immune system so we had to make sure he wasn't exposed to anyone who was poorly, even with a simple cold, and had to be extremely strict with hand washing and cleanliness.
Despite numerous more hospital admissions, James fought on and was finally able to show us his beautiful smile, grew all his hair back and gained lots of weight. We could start to be a family at last. But as Christmas approached, James got poorly again and started having infantile spasm seizures which were constant throughout the day and night and were uncontrollable.
After another admission to Great Ormond Street in January where James underwent yet more tests, the doctors told us that the transplant had not worked and that James's body was once again being attacked by a virus called CMV. This virus had caused so much damage that James was blind and he had so much scarring to his brain that he would be severely disabled and they were not able to control the infantile spasms. After many exhausting and heart breaking discussions with the doctors at GOSH, we had to bring James home with palliative care. With the support of the team at Quidenham Children's Hospice, we were able to have James at home and try to enjoy the little time we had left as a family.
James died 3 weeks later in my arms, 5 days before his first birthday. We are utterly heart broken. No words can describe the pain of watching your baby die, knowing you will never be able to see or hold them again.
SCID can be tested for at birth using the very same heel prick sample that is already carried out as a matter of course. If diagnosed and treated early it has a 95% survival rate as treatment can happen before the baby ever gets poorly. But for some reason the UK has fallen behind and is not currently testing for SCID as part of the new-born screening programme, when it is being done in other countries such as the USA, France, Germany, Spain, the Netherlands, Israel and New Zealand. This test only costs £2.50 and if included in the new born screening programme would be the only condition that could be diagnosed and cured from the heel prick test.
The figures of babies with SCID in the UK is unknown as screening is not currently done routinely. We fear that many other babies may have died as a result of having SCID as they went undiagnosed. Please help us convince the screening committee to include SCID in the new born screening programme by signing this petition. We cannot let this go on. How many more babies need to die before change will happen? This is an urgent call for action. Thank you
Update:- following the UK Screening Committees meeting in June, they have finally announced their decision that they recommend an 'evaluation study' into the benefit of including SCID in the newborn screening test is undertaken. This means screening will take place across a number of regions in the UK to further research the effectiveness of the SCID test. Professor Gaspar from Great Ormond Street Hospital says this is a positive step forwards for our campaign and that in previous cases this has been the first step to a national screening programme.
Although we are pleased the screening committee are finally recognising the importance of this screening, we still need this test to be rolled out nationally in the UK, so we must keep fighting and raising awareness. Please keep signing to help us make SCID testing be done nationally in the UK to save the lives of our precious babies.
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