Guest article by Livia Nagy, founder of “Right(s) beside you Association” (“Melletted a helyem Egyesület”)
One in 11 newborns in Hungary is born preterm. Families are caught unprepared facing preterm birth and one of the main objectives of the “Right(s) beside you Association” (“Melletted a helyem Egyesület”) is to support parents in this unexpected life situation from the very beginning in the NICU. Lack of information but also fears from inappropriate internet materials further complicate the situation for parents. The association’s latest initiative, the free mobile app “PICAPP”, aims to address this.
In Hungary, a preterm baby is born EVERY HOUR! Due to the high and increasing number of preterm births, it has become a matter of social interest to provide up-to-date, evidence-based, credible, and useful information on preterm birth to families who become parents completely unexpectedly and thus feel wholly unprepared. It means becoming a parent of a medically fragile, tiny baby in a matter of moments, in a hospital environment that is completely unfamiliar, scary, and traumatic. The flood of information on the internet makes life very difficult for parents who are already in a traumatic situation, and it mostly scares and frustrates parents who are already frightened by the NICU atmosphere and the condition of their child.
Our association is constantly working to support preterm parents and babies, both in person and online. That is why the idea of the “PICAPP” application was born, which, in addition to its information function, helps to keep track of the important data that is constantly accumulating during the care of preterm babies with its various logging and journal options (feeding, kangaroo time, growth logs). These data will play a major role during the follow-up care and will help the professionals (paediatricians, neurologists, pulmonologists, ophthalmologists, gastroenterologists, lactation and development specialists) to provide the best care for the preterm baby based on his/her condition.
A special feature of the app is that it is specifically designed for preterm babies; for example, you can record a growth curve that is specifically designed for the growth rate of preterm babies. Parts of the app can be used to create a PDF file that can be sent immediately to the appropriate specialist (e.g. paediatrician, ophthalmologist, pulmonologist, etc.).
In addition, science-based articles and information on preterm babies and their care are available with a single click. What also makes the app special is that it was developed and programmed by parents whose child was born extremely preterm and who experienced themselves every step of the NICU journey.
The “PICAPP” is not only a great help during the NICU journey, but will also be used to gather all health information until the ex-preemie becomes an adult. Parents can also access the uploaded data via the piccapp.hu website, so they can log in to the app from their desktop computer. The development of the app is continuous in order to provide the most effective use and information to the parents of babies recovering in the NICU.
The “PICAPP” app has also proved useful in another activitiy already. Since 2016, our Association has organised a Kangaroo Challenge to encourage NICUs and parents alike to kangaroo extensively with their baby. This year, the eighth edition took place – and it included a new feature: Parents could record the data for the kangaroo-a-thon using the “PICAPP” mobile app between 15 May and 15 June 2023. Again this year, babies cared for in Level III NICUs “competed”, and we still focused our attention on babies with a birth weight of 1,500 grams or less, with an emphasis on the first kangaroo session after birth. Only babies that were “professionally” kangarooed (and where the activity was documented with photos and videos) were considered by the jury. Of course, the use of photo and video had to be declared and authorised in writing by the parents in accordance with GDPR regulations. The winner of the 2023 Kangaroo Challenge is the KORÁNYI NICU of Semmelweis University Department of Obstetrics and Gynaecology. Baby Zalán’s kangaroo story was prominent in the justification, Zalán was born at 24 weeks gestation and started kangaroo therapy on day 2 after birth and spent 3-6 hours a day in skin-to-skin contact with his parents. We were also happy to see that the “PICAPP” app helped participants record time spent kangarooing.
The main objective of our association in connection with the mobile application is to ensure that all potentially affected parents or prospective parents are informed about it, have access to it, and may use it if they want to. The “PICAPP” application was created with support of the Generali Insurance, “The Human Safety Net” project.