Apr 15, 2021

TangataWhenua.com

Maori News & Indigenous Views

Leilanis newborn screening story | what the heel prick test is all about

2 min read

Former world number one squash champion Leilani Rorani now lives in Wellington with her husband Blair, and their four children. Youngest child Esther, now nine months old, had newborn hearing screening, and Leilani says it was easy peasy.

I went into the room at the clinic, and I had my other two daughters with me. It was really simple and fast. I read the material about hearing screening and knew it was the best thing to do for Esther. If there were any problems with her hearing, it was better to pick them up sooner rather than later.

I liked that it was something external just putting a probe in her ear. The test showed that her hearing was fine.

But Leilani has a different story when it comes to newborn metabolic screening the heel prick test.

None of our children have had the heel prick because we thought it was all about recording their identity. We were told this early on, and thought it all the way through, with all our children.

Leilani says she and husband Blair had no idea that the test was actually designed to detect rare but life threatening metabolic disorders, so these can be picked up early and treated.

If we had realised, we probably would have had the test for all our children. My message to other parents would be to find out all you can about the various health checks available for your children, so you can make a decision based on all the information.

Fortunately, Leilanis children are all very healthy, something she attributes in part to her commitment to breastfeeding.

Leilani is a champion for the Ministry of Healths breastfeeding campaign and urges mums to persevere, even if its difficult at first. Breastfeeding doesn’t always come easy, but the health benefits to mother and baby are huge!

3 thoughts on “Leilanis newborn screening story | what the heel prick test is all about

  1. Newborn screening by blood spot is done to identify rare genetic metabolic disorders soon after baby's birth. But the storage and access to retrieval of stored sample raises many concerns over privacy issues.

    However, for parents who don't want to take blood spot test due to privacy concerns do have a simpler option they can screen their newborns with a urine sample which does not contain DNA so no privacy concerns. Except few blood based tests as many as around 100 rare metabolic disorders are covered in the testing compared to only 40-45 in blood spot.

    Parents can now even order this test online. As collecting and transporting a urine sample is simple it is now being offer Direct to Home to new Parents. This test covers most parameters for a comprehensive Newborn Genetic Wellbeing.

  2. We had a great question come in from Facebook, asking, who holds the samples, for how long and what happens to them.

    We found this info, which if very helping:

    Yes, you can ask for your baby's blood spot card back after screening is complete. If you would like to request your baby's blood spot card, please download and complete the form below and send it to the laboratory. You will be sent the top part of your baby’s blood spot card with the specimen collection paper holding the blood sample. Download the form 'Return of newborn metabolic screening samples (guthrie cards) to family'

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