Guidelines, updates and practice reminders

The Newborn Metabolic Screening Programme: Guidelines for Health Practitioners (NMSP) have been updated. These are available above.

Please discard all previous versions of the guidelines.

Screening for spinal muscular atrophy (SMA) is expected to start early 2025. Exact timeframes are still being worked through and this information will be updated when a start date has been set. 

Please see Screening for spinal muscular atrophy (SMA) for more information.

Changes

• The newborn blood spot samples should now be taken from 24 hours of baby’s age.
• The optimal time for newborn blood spot collection is between 24 and 48 hours of baby’s age and should be before 72 hours. This is a change from between 48 and 72 hours of baby’s age.
• It is recommended that blood spot samples be collected while babies are still in the hospital or birth facility if possible.
• The earlier collection will help ensure early diagnosis and can prevent irreversible damage and life-threatening illnesses cause by delay in access to treatment.
• Monitoring of the samples that have already been collected from 24 hours indicated that there is no impact on the quality of samples collected from at 24 hours. This will continue to be monitored.

Practice reminders

• Please ensure all relevant staff are aware of who is responsible for blood spot sample collection especially when babies are inpatients and this is documented clearly and understood by all.  
• Please ensure the date/time of sampling is recorded on all blood spot cards.
• Send each blood spot sample when collected and dried – don’t hold onto samples to send them in batches.
• Continue to collect samples from 24 hours of age and send to the laboratory regardless of any upcoming public holidays.
• Record the courier tracking number before blood spot sample cards are sent to the laboratory. Take a photo or note down the number from the courier bag and add this to the baby’s health care records.
• Expect to receive a result in 7–10 days of the sample being taken, if not, check that the laboratory has the sample using the courier tracking number and call 0800 LabPLUS (0800 522 7587) to enquire about the sample/result. Remember to let the parents/guardian know the results.
• Record the test result in the baby’s clinical notes.
• There is a great best practice e-learning module available at LearnOnline Best Practice - Newborn Metabolic Blood Spot Collection.
• Resources: lancets, cards and courier bags can be ordered, free of charge, via newbornscreeningresources@adhb.govt.nz
• NMSP information resources for both midwives and whanau are available at Newborn Metabolic Screening publications.
• When whānau/parents/guardians decline, if appropriate, please ask them if they agree to a blood spot card being filled out with their demographic information, for the purposes of monitoring participation in the programme. If they consent, fill the sample card in as much as possible including a note that screening was declined, and courier it to the laboratory.
• Results are no longer being sent by fax, so please contact the laboratory ASAP to update your preferred contact details. Fill out the form on medialab.com and email to LabLink@adhb.govt.nz

An example of the importance of the timing of collection and transit

• Every day counts to making a difference for baby with newborn screening. Here is one example of why delays in collecting and sending blood spot samples can have serious consequences:
  • Congenital adrenal hyperplasia (CAH) is just one of the serious illnesses that can be detected by newborn screens. Babies with CAH who are detected through newborn screening in the first week of life usually have minimal symptoms - they might be starting to spill and have mild electrolyte disturbance but are otherwise well babies. The same disease picked up at 2–3 weeks old can look completely different, with babies that are extremely unwell. They can be dehydrated, well below their birth weight, with little urine output and a very low or unmeasurable BP. The electrolyte disturbance - low sodium, high potassium - can be very severe and immediately life-threatening. Some babies with CAH that is picked up late will be so sick they need admission to ICU and might be left with life-long disability. Remember, every day counts with newborn screening.