Add Severe Combined Immunodeficiency to the heel prick test for newborns in Scotland
The Issue
When our daughter was diagnosed with Severe Combined Immunodeficiency (SCID) at just three months old, it turned our world upside down. SCID, a rare genetic condition, means that a baby is born without a functioning immune system. They can appear completely healthy, smile and grow, yet be unable to fight the infections most of us recover from without thinking, which is life threatening. Without life saving treatment, a baby may not live to see their first birthday, imagine hearing those words.
Raising awareness can save lives! Raising awareness can help fight for change!
Behind every diagnosis is a family learning new medical terminology, trying to understand treatment plans, training in medical procedures, administering medication, preparing for hospital stays and visits, living with uncertainty and finding strength they never knew they had.
Our Story
Most people will never hear of Severe Combined Immune Deficiency, specifically ADA-SCID. We hadn’t either — until it became part of our everyday life.
When Stevie was born, she appeared as a beautiful, healthy baby girl, but within just two weeks she became seriously unwell with infections that her body couldn't fight. She spent a week in hospital with bronchitis, before being discharged, only to be readmitted four weeks later for a further ten days with meningitis and a lung infection, as doctors tried to understand why she was so ill. During this time, Stevie underwent countless blood tests, scans, a lumber puncture and other invasive medical procedures while her family lived with constant uncertainty.
Thanks to the fast actions and diagnosis by Stevie's amazing consultant and wonderful medical team, she was eventually diagnosed with ADA Severe Combined Immunodeficiency. Following her diagnosis, our lives changed overnight. Stevie had to be kept in protective isolation to reduce the risk of life-threatening infections while she received weekly injections, antibody infusions, blood tests and attended hospital at least twive a week to be monitored closely. We waited and longed for the call to confirm a donor had been found for her to receive a stem cell transplant. In January 2025, Stevie spent six weeks in hospital and received her life saving stem cell transplant. This condition doesn't end after treatment, it becomes a lifelong journey. It is complex, invisible and often misunderstood.
Why sign our petition?
Stevie's story could have been very different. If SCID had been included in Scotland's newborn heel prick screening programme, her condition could have been identified shortly after birth and she may not have become critically ill and had to experience the invasive medical procedures she did.
Despite being rare, the stakes couldn't be higher for those affected. Early detection through routine newborn screening is crucial, and this is where the heel prick test can play a lifesaving role. By simply adding SCID to the standard heel prick test for newborns in Scotland, we can detect this condition almost at birth, allowing for timely intervention and treatment. No family should have to watch their baby become critically ill from a condition that can be detected with a simple newborn blood spot test.
Currently, the heel prick test screens for a variety of conditions such as cystic fibrosis and sickle cell disease, both of which can be life-altering if left undiagnosed. Adding SCID to this list could be a crucial step in saving lives and preventing the severe health issues associated with undiagnosed immune disorders, such as meningitis.
England, Finland and United States are a few examples of where SCID is already included in newborn screenings, demonstrating that this addition is not only feasible but also critical. The inclusion of SCID in Scotland's newborn screening program can ensure early diagnosis, earlier treatment and better chances for children. It can save lives!
We are sharing Stevie's story to ask the Scottish Government to add SCID to the newborn heel prick screening programme, giving every baby in Scotland the best possible chance of a healthy future.
Learn more:
Please, join us in calling for this vital change. Sign the petition to help protect Scotland's newborns and prevent needless suffering.
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The Issue
When our daughter was diagnosed with Severe Combined Immunodeficiency (SCID) at just three months old, it turned our world upside down. SCID, a rare genetic condition, means that a baby is born without a functioning immune system. They can appear completely healthy, smile and grow, yet be unable to fight the infections most of us recover from without thinking, which is life threatening. Without life saving treatment, a baby may not live to see their first birthday, imagine hearing those words.
Raising awareness can save lives! Raising awareness can help fight for change!
Behind every diagnosis is a family learning new medical terminology, trying to understand treatment plans, training in medical procedures, administering medication, preparing for hospital stays and visits, living with uncertainty and finding strength they never knew they had.
Our Story
Most people will never hear of Severe Combined Immune Deficiency, specifically ADA-SCID. We hadn’t either — until it became part of our everyday life.
When Stevie was born, she appeared as a beautiful, healthy baby girl, but within just two weeks she became seriously unwell with infections that her body couldn't fight. She spent a week in hospital with bronchitis, before being discharged, only to be readmitted four weeks later for a further ten days with meningitis and a lung infection, as doctors tried to understand why she was so ill. During this time, Stevie underwent countless blood tests, scans, a lumber puncture and other invasive medical procedures while her family lived with constant uncertainty.
Thanks to the fast actions and diagnosis by Stevie's amazing consultant and wonderful medical team, she was eventually diagnosed with ADA Severe Combined Immunodeficiency. Following her diagnosis, our lives changed overnight. Stevie had to be kept in protective isolation to reduce the risk of life-threatening infections while she received weekly injections, antibody infusions, blood tests and attended hospital at least twive a week to be monitored closely. We waited and longed for the call to confirm a donor had been found for her to receive a stem cell transplant. In January 2025, Stevie spent six weeks in hospital and received her life saving stem cell transplant. This condition doesn't end after treatment, it becomes a lifelong journey. It is complex, invisible and often misunderstood.
Why sign our petition?
Stevie's story could have been very different. If SCID had been included in Scotland's newborn heel prick screening programme, her condition could have been identified shortly after birth and she may not have become critically ill and had to experience the invasive medical procedures she did.
Despite being rare, the stakes couldn't be higher for those affected. Early detection through routine newborn screening is crucial, and this is where the heel prick test can play a lifesaving role. By simply adding SCID to the standard heel prick test for newborns in Scotland, we can detect this condition almost at birth, allowing for timely intervention and treatment. No family should have to watch their baby become critically ill from a condition that can be detected with a simple newborn blood spot test.
Currently, the heel prick test screens for a variety of conditions such as cystic fibrosis and sickle cell disease, both of which can be life-altering if left undiagnosed. Adding SCID to this list could be a crucial step in saving lives and preventing the severe health issues associated with undiagnosed immune disorders, such as meningitis.
England, Finland and United States are a few examples of where SCID is already included in newborn screenings, demonstrating that this addition is not only feasible but also critical. The inclusion of SCID in Scotland's newborn screening program can ensure early diagnosis, earlier treatment and better chances for children. It can save lives!
We are sharing Stevie's story to ask the Scottish Government to add SCID to the newborn heel prick screening programme, giving every baby in Scotland the best possible chance of a healthy future.
Learn more:
Please, join us in calling for this vital change. Sign the petition to help protect Scotland's newborns and prevent needless suffering.
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Petition created on 20 July 2026