If you are not offered Screening for SMA for your newborn baby
If you are not offered Screening for SMA for your newborn baby
This page is for any parent whose newborn baby has been born in a hospital or area that is NOT offering spinal muscular atrophy (SMA) screening.
A newborn baby can be screened for SMA if:
- the parents have another child who has SMA
- both parents have had positive SMA carrier tests.
Most parents in this position will have already discussed their options during pregnancy. This includes the possibility of an NHS-funded 5q SMA diagnostic blood test for their baby.
If this hasn’t happened and you are not already in contact with a Regional Neuromuscular Centre, ask your GP, midwife or obstetrician to see you and your baby for advice.
SMA is rare. They may not have come across it before. Our information sheets listed below may be helpful.
Explain your relationship to your family member. Tell them about any carrier testing results you have had personally. Your baby may need an immediate 5q SMA diagnostic blood test.
If the test shows SMA is suspected your baby should be referred urgently to your nearest Regional Neuromuscular Centre.
Further information:
If you are concerned your baby may have symptoms of SMA, contact your GP as soon as possible.
SMA is a rare condition. They may not have come across it before. Our information sheets listed below may be helpful.
We do not hold lists of private clinics.
If you contact a private clinic to screen your baby for 5q SMA , check what Medical Laboratory will do this test.
There is a general accreditation for quality and competence for Medical Laboratories. This uses the standard, ISO15189. The accreditation assessment is often done by the UK Accreditation Service (UKAS). They are used by the government to assess medical laboratories that perform testing.
If you choose to contact a clinic for private screening for 5q SMA for your baby, check:
- that the Medical Laboratory doing this test for the clinic is accredited to this standard for this test
- what would happen if your test shows your baby has suspected 5q SMA. It is vital that your baby is referred and seen immediately by clinical experts in the condition at a Regional Neuromuscular Centre >. They will be able to check the test result and provide any appropriate care, treatment and support.
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This page, and its links, provide information. This is meant to support, not replace, clinical and professional care.
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