independent

Sunday 21 July 2019

Petition in baby Juniper's name to test for life-threatening condition

Baby Juniper is battling Severe Combined Immunodeficiency or SCID
Baby Juniper is battling Severe Combined Immunodeficiency or SCID

Mary Fogarty

Friends and family of baby Juniper have prepared a petition asking Minister for Health Simon Harris to introduce a test for Severe Combined Immunodeficiency (SCID) in the newborn screening programme.

The six-month old baby girl, whose parents have asked that we use just her first name, has no immune system and therefore the inability to fight off infection, as reported in last week's Bray People.

The north Wicklow girl spent Christmas in isolation in hospital and her treatment will continue in the UK. As well as raising funds to support her parents' expenses, Juniper's loved ones are raising awareness of the rare life-threatening condition. The petition is at uplift.ie and entitled 'please save lives introduce screening for scid at birth'.

Children with the condition have a severely impaired immune system and are particularly vulnerable to severe infection.

The treatment for this condition (haematopoietic stem cell transplant-HSCT) has a much higher success rate if diagnosed early and before the affected infant acquires infections.

In Ireland, the majority of SCID cases are not diagnosed until the affected infant develops symptoms of infection.

Survival rates after HSCT in children with SCID diagnosed late and with infection have been reported at approximately 70 per cent. Children diagnosed and treated early (before 3 months of age), before they have acquired any infections, have a much better chance of survival.

Internationally, this screening has already been included, with success, in New Zealand, Canada, Taiwan and all US states. Pilot schemes have also started in Israel, Australia, the Netherlands and the UK.

Moreover, studies in these countries have also concluded that early diagnosis in the heel prick test and treatment prior to infection is more cost effective to the healthcare system. One of the concerns outlined in the petition is the introduction of the live rotavirus vaccine. 'While this vaccine is safe for healthy children, it can be dangerous for children with SCID,' it reads.

'For Juniper's parents, her diagnosis of SCID has been devastating and shocking, considering that up to a few weeks ago they believed she was a healthy and thriving baby.

'Unfortunately, due to the lack of testing for SCID, she spent three weeks in hospital, on three courses of antibiotics, while deteriorating rapidly before an accurate diagnosis was made. Now they must travel to the UK for life saving treatment, and face a lengthy and difficult journey ahead. Juniper's parents do not want any other parents to endure what they have had to, when a simple blood test at birth could have prevented Juniper from contracting infection and given her a higher chance at survival.'

The petition had reached more than 1,300 of a targeted 2,000 signatures at the time of going to press.

Bray People

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