The Newborn Metabolic Screening Programme is run by the National Screening Unit. It aims to screen every baby born in Aotearoa for several rare but life-altering disorders. It is carried out after baby is 24 hours old, preferably before they are 72 hours old. The disorders it tests for are often hard to detect without a blood test, and screening for them means that they are detected before baby becomes unwell with them.
The test is a screening tool, and if your baby’s results indicate that they may have a disorder, then they will need diagnostic testing to determine whether they actually have the disorder or not. This is carried out by a paediatrician, and if your baby’s results come back with an increased chance of a disorder, your midwife will refer you to a paediatrician immediately.
The test involves using a sterile lancet to make a small cut in your baby’s foot, near the heel. The drops of blood from this cut are caught on a special card, filling four circles with blood drops. After the sample is taken, you can apply pressure to baby’s heel with a small swab to stop any further bleeding. Sticking plasters are not usually needed.
To help make the test easier, it can help to have booties on their feet or to wrap them warmly so there is good blood flow to their feet when it comes time to do the test. The test can make baby uncomfortable, but this usually passes quickly. Some babies do not react at all to the test, while others may cry a little.
Some midwives will ask you to feed baby while the test is being completed, while others will ask you to hold baby upright with their legs dangling.
Once the blood spot card has been tested, it is usually stored forever in a locked room. Stored blood spot cards can be used again for several reasons:
- for repeat testing, if the result was unclear or if the baby does have a disorder and this was not picked up by screening
- to investigate unexplained illness or death, with whānau consent
- for quality assurance purposes, to make sure that the tests that are being run are as accurate as possible, or to make improvements to the screening programme
- for research project approved by an ethics committee
- for forensic purposes, to identify a missing or dead person (usually with whānau consent)
- or by court order
If you would prefer that the blood spot card not be used for any of these purposes, you can request that it is returned to you after testing. If you wish to do this, your midwife can provide you with the form you need to send, either to the lab with the blood spot card, or if you decide later, to send to the lab separately.