In a game-changing development for healthcare, parents can start building a lifelong medical record for their children from birth, thanks to a partnership between personal digital health vault Ajuda and the National Metabolomics Platform (NMP), hosted at the Centre for Human Metabolomics at North-West University.
The partnership will see a baby’s newborn screening results uploaded directly to a parent’s own secure digital storage vault, forming the foundation of a lifelong medical record.
What is newborn screening?
Newborn screening is a reliable screening for newborns which has been around since the early 1960s. It’s usually performed within three days of birth. A healthcare professional pricks the baby’s heel to get a blood sample, which is sent away for analysis (in South Africa, the NMP is currently the only laboratory that does newborn screening for 22 conditions simultaneously). It’s quick and there’s no risk to your baby, but the benefits can be enormous.
“Ensure your child’s well-being isn’t left to chance. A simple and affordable test can make a big difference in your child’s life,” says Dr Ilse Du Preez, acting director at the Centre for Human Metabolomics/NMP. “Just like you check your newborn’s hearing and vision and keep up with vaccinations, it’s important to consider testing for genetic metabolic disorders early on. Detecting these issues early can have a lasting impact on your child’s health.
“The screening is simple and only requires a few drops of blood, collected from your baby’s heel by a trained professional such as a doctor, nurse or midwife. Take this important step for your child’s future and enjoy the peace of mind that comes with knowing.”
What newborn screening tests for
Newborn screening tests for a range of inherited, genetic or other disorders with which a baby could be born, but which have no immediate visible signs. Undetected, they can cause serious health complications for the child later in life.
“These disorders, which are present at birth, can cause harmful substances to build up in the body if not managed,” explains Dr Du Preez. “If untreated, this buildup can lead to serious mental and physical disabilities that can worsen over time.”
These complications are preventable, but not reversible, which is why detection in the first three days of birth is crucial. An example is congenital hypothyroidism, which can lead to permanent intellectual disability if it’s not picked up early. “When detected early, these disorders can often be treated or managed effectively, helping to ensure your child stays healthy.”
Adds Dr Liza Street, a paediatrician and co-founder of Ajuda: “This test is recommended, as it can detect treatable conditions. Identifying these problems early allows for timely intervention. However, if a problem is only recognised after the child begins exhibiting symptoms, it may be too late – the damage may already be done.”
The conditions for which newborn screening tests can be categorised as follows:
- Metabolic problems – affect the body’s ability to convert food into energy, which is used to perform everyday functions including moving, thinking and growing.
- Hormone problems – affect chemical messengers that help control bodily functions by sending messages to your organs.
- Other problems – newborn screening also tests for a range of other rare but serious medical conditions that don’t fall under the categories above.
Most comprehensive medical record ever
Your medical history is like a CV of your whole life which tells a story of your health and your healthcare. A complete narrative gives a healthcare provider all the essential information they need to offer you the best possible treatment; however, when there are gaps in your ‘health CV’, it slows the process down, increases the chance of overlooking important details, and can potentially put you at risk. For example, a doctor may unknowingly prescribe medication to which you’ve had a bad reaction in the past.
Unfortunately, gaps are common: documents get lost, healthcare providers change and people move or simply forget things.
Ajuda is a secure digital health vault that makes it possible for anyone to store their health information in one convenient place where they can get quick access to it anywhere, anytime, through their digital device. It’s simple and easy to use, and means no more stressing about losing your family’s medical records or struggling to keep track of medication.
Using Ajuda, parents can build a complete, unbroken medical record for their children. Through this partnership, that record can start from birth.
“The NMP communicates newborn test results to both the parents and the attending healthcare practitioner shortly after they are processed. However, the doctor present at the birth may not be the same provider who conducts the baby’s follow-up visits, and parents may be overwhelmed by the emotions and change that come with having a new baby. As a result, these important test results can sometimes be overlooked as the baby navigates various healthcare providers in its early years,” explains Dr Street.
“For now, parents can upload the result to Ajuda. But, ultimately, the goal of this partnership will be for the result to be added directly to the baby’s Ajuda vault, ensuring better communication of health information. This centralised approach helps maintain continuity of care and keeps all relevant parties informed about the baby’s health status.”
Says Dr Du Preez, “By partnering with a digital platform such as Ajuda, our laboratory not only streamlines newborn screening but also ensures results and medical records are securely stored and easily accessible, empowering parents with the information they need for their child’s health journey.”
Newborn screening is just the start of a baby’s health screening journey: Many screenings will follow, and these results can also be captured and added to Ajuda, building a solid foundation for the child’s healthcare in future.
“That first year of a baby’s life is so active in terms of data gathering, from receiving vaccines to achieving milestones, and it’s also the time when parents are sleep-deprived and adjusting to their new normal. Probably the last thing on their minds is where they’re going to store their baby’s health records so they can find it again in two, five or 10 years’ time,” says Ajuda co-founder, Taryn Uhlmann.
“Ajuda makes it easy. We’re here to hold your hand and be your digital friend so you can be empowered with a lifetime record of your family’s health.”
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