What is the Newborn Bloodspot Test?
Newborn blood spot screening involves taking a blood sample to find out if your baby has 1 of 10 rare but serious health conditions.
Most babies won't have any of these conditions but, for the few who do, the benefits of screening are enormous.
Early treatment can improve their health, and prevent severe disability or even death.
What does the blood spot test involve?
When your baby is 5 days old, a Community Midwife will prick their heel and collect drops of blood on a special card.
Occasionally the sample may be taken later than this.
Sometime a second sample or repeat may be needed and the reason for this should be explained. It does not necessarily mean something is wrong.
We also have trained Health Visitors who will carryout this test for any baby aged under 1 year who has moved in to the area without any Newborn Bloodspot Test record. For example moved in from abroad.
What conditions are tested for?
Congenital Hypothyroidism (CHT)
Cystic fibrosis (CF)
Severe combined immunodeficiency (SCID)
Sickle cell disease (SCD)
And 6 inherited metabolic diseases:-
Glutaric Aciduria type 1 (GA1)
Homocystinuria (pyridoxine unresponsive) (HCU)
Isovaleric Acidaemia (IVA)
Maple syrup urine disease (MSUD)
Medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
Phenylketonuria (PKU)
North Cumbria Integrated Care are part of a Pilot testing for SCID.
More information can be found at: Great Ormond Street Hospital for Children has more information on severe combined immunodeficiency
Does my baby have to have the blood spot test?
The blood spot test is not compulsory, but it's recommended in order to be able to flag these serious conditions quickly
How and when will I get the results?
Child Health Information Service (CHIS) will send a letter out when baby’s results are all not suspected, which means it is unlikely that baby has any of the conditions.
If you have not received a letter by 8 weeks please speak to your Health Visitor. It does not necessarily mean something is wrong.
You'll be contacted sooner if your baby screens positive:
- the day the result is available, or the next working day, if your baby is thought to have congenital hypothyroidism (CHT) – you'll be given an appointment to see a specialist
- before your baby's 4 weeks old if they're thought to have cystic fibrosis
- before your baby's 6 weeks old if they're thought to have sickle cell disease
Screening for cystic fibrosis finds some babies who may be genetic carriers of the condition. These babies may need further testing.
Screening for sickle cell disease also finds babies who are carriers of this or other red blood cell diseases.
Carriers are healthy, although they can experience problems in situations where their bodies aren't getting much oxygen – for example, if they're having an anaesthetic.
Parents of babies who are found to be carriers should be told by the time they're 6 to 8 weeks old.
A small number of babies will screen positive for one of the conditions. This doesn't mean they have the condition, but they're more likely to have it. They'll be referred to a specialist for more tests.
It's important to know that screening isn't 100% certain. A baby with a negative screening result may later turn out to have the disease screened for. This is known as a false negative.
Occasionally, other medical conditions are picked up by blood spot test screening.
Contacts:
Antenatal and Newborn Screening Coordinators in Maternity are
Alaina McAdam at Cumberland Infirmary Carlisle: - 07919596839
Lucy Temple at West Cumberland Hospital: - 07825932674
Lynn Baines University Hospitals of Morecambe Bay NHS Foundation Trust which covers Furness General Hospital, Westmorland General Hospital in South Cumbria:- tel 01524 512447 or 07795 970564
Screening Link Health Visitors (HV) and Manager
Jane Teper Integrated Team Manger: Call 01229 484010 or 07825273174
Susan Morris-Williams Screening Link HV for North Cumbria: Call 07899944527
Mandy Allonby Screening Link HV for South Cumbria: Call 07825531257
Sarah Rushton Screening Link HV for South Cumbria: Call 07917271442
Child Health Information Service
Anne Edwards Child Health Information Service Manager, Countywide based in Carlisle: Call 01228 608848.
Sue Clunie Child Health Information Support Analyst, Countywide based in Barrow: Call 01229 402846.
Nicola Cruickshank CHIS Team Leader covers Carlisle & Eden areas: Call 01228 608155
Sara Williamson CHIS Team Leader covers Allerdale and Copeland: Call 01900 705255
Sharon Stirzaker CHIS Team Leader covers South Lakes and Barrow-In-Furness areas: Call 01229 409604.