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.
Source: Supplied.
The partnership will see a baby’s newborn screening results uploaded directly to a parent’s own secure digita-storage vault, forming the foundation of a lifelong medical record.
What is newborn screening?
Newborn screening is a reliable screening for newborns that’s 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 wellbeing isn't left to chance. A simple and affordable test can make a big difference in your child's life,” says 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 are 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 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,” says Du Preez.
“This test is recommended as it can detect treatable conditions,” adds Liza Street, a paediatrician and co-founder of Ajuda. “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 following is a list of conditions that are screened for in newborn tests:
- 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 the 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
A medical history is like a CV of a person's whole life that tells a story of his or her health and their healthcare. A complete narrative gives healthcare providers all the essential information they need to offer clients the best possible treatment, however when there are gaps in a “health CV", it slows the process down, increases the chance of overlooking important details, and can potentially put people's health outcomes at risk.
For example, a doctor might unknowingly prescribe medication a person has had a bad reaction to 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 a 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.
Public Health 28 Oct 2024
“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,” says 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 to maintain continuity of care and keeps all relevant parties informed about the baby’s health status.
Empowering informed parenthood
“By partnering with a digital platform such as Ajuda, our laboratory not only streamlines newborn screening but also ensures that results and medical records are securely stored and easily accessible, empowering parents with the information they need for their child's health journey,” says Du Preez.
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.”
