The COVID-19 pandemic created new challenges for NICUs and parents of premature or sick newborns. Due to the risk of Coronavirus getting into the NICU, some units restricted the time parents were allowed to spend with their babies. But other units showed an advanced approach by letting mothers stay with their babies 24/7. We interviewed Livia Nagy from the parent organisation “Melletted a helyem Egyesület” in Hungary on the impact of COVID-19 on NICUs and parents.
- Exchanging knowledge and sharing experience are always important but even more so in times of COVID-19. What kind of activities have you done so far to raise awareness on the situation of parents in the NICU during the COVID-19 pandemic?
At the outset of the pandemic emergency, NICUs introduced drastic measures to restrict access for parents. The situation varied greatly among the 21 Level III and 7 Level II neonatal intensive care units despite the fact that the Neonatology Division of the Hungarian Medical Association was fast in specying clear recommendations, advising for the presence of BOTH parents Furthermore it raises awareness of the significance of the continuous use of the mothers’ own milk, breastfeeding, and kangaroo care. We have NICUs where nothing changed regarding parents’ presence, but most of the NICUs closed the door in front of the newborn’s fathers and have not allowed them to enter the NICUs for months. There are Units who cut the visiting time to a few hours or 10-15 minutes or even completely closed the doors in front of the mothers as well. Most of the Units offered the opportunity for hospital stays to NICU moms and in this scenario most of the key pillars for family-centered care could be provided; however, those moms who decided to go home to their other children in order to be able providing home schooling, or who had elderly family members who needed help, could not return to the NICU. This means not going back to their babies, not being able to breastfeed them and not even doing kangaroo care or just touching them.. The situation is still extremely confusing and we have spent days collecting information from healthcare professionals and parents throughout the country.
- What did it take to practically manage your policy activity?
After gathering enough information we released a Call-to-action statement, where we pointed out that “such a unified and patient-centered care should be provided in view of equal opportunities that in the current complicated situation does not stop at considering short-term factors but also takes into account long-term risks and the consequences of neglecting babies.” We also asked for joint statements from the Hungarian Perinatal Association and the Hungarian Pediatric Association to ease the situation of the parents and most importantly the preterm babies who had not had any connection with their parents. After the Call-to-action statement the media began to show interest in the newborns and their parents well-being and started supporting us with articles and radio interviews. The Call-to-action caught the attention of the Commissioner for Fundamental Rights (Ombudsman) as well and we requested an official statement . Dr. Akos Kozma released the statement quickly and clarified what the new regulations by the Chief Medical Officer of Hungary meant exactly concerning the ban on visits to inpatient institutions; thus, for example, that the ban did not apply to parents of minors. At the same time, during a health emergency, patient rights may be exercised only to the extent that they do not endanger the successful elimination of the health crisis. Thus when establishing in-house regulations, there has to be a balance between the aims of eliminating the crisis and the exercising of patient rights. The Commissioner also stated that the scientific position may not vary from one institution to another and local regulations must always rely on evidence-based medicine. He highlighted that the right for visits by parents does not only mean the reassuring presence of parents but it is of key significance for a safe and healthy beginning of life (early attachment, reducing stress, ensuring feeding with the mother’s own milk, etc.) and it also affects the parents’ own mental health. The Commissioner also contacted the Secretary of State for Health at the Ministry of Human Capacities and requested information on whether they check the compliance of care practices of NICUs with the COVID-19 recommendations of the neonatology association.
- What should be taken into account by establishing such a policy activity, like a Call to Action, as you did?
We need to gather information, not only from parents but also from the NICU staff to have a balanced view of the situation. Our communication concentrated on preterm babies, their situation, their rightsremained ‘blame free’. We wanted a solution which is beneficial for everyone involved in neonatal care. The situation in Hungary is already worrisome (without Covid-19), NICUs are running on low staff numbers, especially in terms of the lack of qualified nurses, their space is limited which is not helpful for social distancing between staff and parents. We had to keep in mind that although we are the voice of the families we also need to protect the staff of the units as the security of the preterm babies represents a priority (any outbreak between HCPs would jeopardize medical care). We were armed with WHO and UNICEF recommendations and new scientifical findings. Evidence-based treatment is also on our side; so we were looking for rational, safe and beneficial solutions.
- What would you recommend other parent organisations in times of COVID-19?
Gathering clear information as advocacy is a great responsibility. Before you start, you have to know all the stakeholders who are willing to support you. Our association also includes HCPs and not only parents, our founding members are respected members of the neonatal society. Having their support is a key element in order to achieve such goals without risking your organisation or your parental voice. Keep in mind that the situation is “unknown”, you do not have all information about this virus and right at the moment you have no “champion” country regarding the new situation. You can take ideas and ask for help from other countries’ parent organisations, but you have to adapt these strictly to your own countries situation. At the same time, all of us who joined the rollercoaster of the NICU journey know how difficult life is even without a pandemic. These parents are not in a position to stand up for their and their babies’ rights while they are handling their own trauma of a preterm birth. It is already a huge loss and stress for the parents. Adding a situation which we are going through these days only makes this more difficult. They have to know we are here and we help, hear and support them!
- Can you share a positive story around the COVID-19 situation? Is there more communication, more close contact to parents or healthcare professionals from your organisation?
I think nobody thought at the beginning that we could learn something positive from this new situation, as fear and panic were dominant. BUT we are also receiving success stories especially where NICUs keep the moms in hospital settings and thus the figures concerning mothers’ own milk and breastfeeding are skyrocketing. Babies are doing skin to skin minimum twice a day for a minimum of 2 hours, even the tiny ones who are in need of respiratory help.
The association held its annual general meeting a few days ago and we started to set up a plan for supporting parents and the NICU staff in the following months. We discussed how we may advise hospital management on how they can keep the situation as safe as possible while also protecting the mental state of the parents and continuing evidence-based care for preterm babies.
You can also find Frequently Asked Questions (FAQ ) about COVID-19 concerning maternal and newborn health on the website of GLANCE, the Global Alliance for Newborn Care, a new global initiative, founded and coordinated by EFCNI