ARNIS awarded EFCNI Summit

The activity of the Pandemic Association

At the beginning of 2022 we started out with many plans. We aimed to increase the number of activities in hospitals, being close to hospitalized mothers, families in need of counseling, medical staff and most importantly newborns long hospitalized at birth. The hospitals with which we had started projects were increasingly eager to do activities for their neonatology departments, the world seemed to receive and embrace the change to Family Centered Care.

But it came and it swept us away like a tsunami and pushed us back a few years. SARS-COV-2 shook us just a few days after the “MAMA” workshop – an art therapy workshop dedicated to mothers and medical staff from the Clinical Hospital of Obstetrics and Gynecology Philanthropy Bucharest. It was the last action inside a hospital for the next 2 years.

In the begining, we got scared, then we wanted to see what the needs of families with premature babies and hospitals in the context of a pandemic are. We rethought and worked hard to minimize separation, to increase the safety of hospitals for babies, families and healthcare professionals, we translated and adapted together with doctors in Romania a Q&A Guide for pregnant women and mothers on COVID-19 topics and we created a call-center to which parents received answers from specialists (NeonaTEL).

Zero-separation policy is the philosophy of the “Pui de on in terapie” project developed by the Romanian Association for Long-Term Hospitalized Newborns – ARNIS (former known as Unu si Unu Association). The “Pui de on in terapie” project aims to turn Neonatology departments into Family Centered Care, where parents have access to education and resources to actively participate in caring for their baby during long-term hospitalization. We make this possible through the continuous professional training of medical staff, donating  materials and equipment that facilitate a gentle, individualized, neuro-protective care and attention to the needs of the newborn with diseases at birth.

F.I.N.E. training in Romania

Due to the pandemic we have not been able to continue delivering the courses dedicated to medical staff and encouraging the inclusion of parents on the ward with the baby. From the beginning of the project, in 2018 and until March 2020, I had already trained over 250 doctors and nurses in the F.I.N.E. – Family and Infant Neurodevelopmental Care Education. We were very proud that we managed to bring to Romania this course coordinated by Dr. Inga Warren (Senior NIDCAP trainer), which has been running for over 24 years in over 24 countries. The solution to continue training doctors during restrictions, when actual participation in a classroom and travel between countries seemed impossible, came from our partners in Hungary and materialized in an online course platform. The idea was developed together with Dr. Inga Warren and embraced as an optimal solution to continue the project in Romania.

The F.I.N.E. e-learning platform in Romanian

During the first months of 2021, we focused on creating an e-learning platform, translating course materials from English into Romanian and co-opting hospitals to attend the course. The materials were translated with the help of two medical staff specialized in Neonatology. The costs of building the platform and the participation of the 65 medical staff in the course in 2021 were covered by the supporters: volunteers, companies and individual donors (Direct Debit).

The e-learning platform is still active, and in 2022 we have already conducted two training sessions for 36 doctors and nurses, and the third session will take place in the fall of 2022. F.I.N.E. is available for any specialist interested in neuro-protective care for the optimal development of the long-term hospitalized newborn:

The change in approach was forced by circumstances, the inability of trainers to travel and students to participate in person. However, this difficulty has led to progress. We feel more prepared to deal with delicate situations and to adapt the program to reach the goal: Parents with long-hospitalized babies and medical services to European standards.

Project awarded at the EFCNI Summit

Efforts have not gone unnoticed for EFCNI, the network of which ARNIS (formerly known as Unu si Unu Association) has been part of 2013. The European Foundation for the Care of New-born Infants organizes the annual Patient Organizations Summit. This year’s summit took place between 6-8 May 2022 in Freising, Germany. ARNIS, through its president and founding member Corina Croitoru and Livia Nagy Bonnard (Melletted Association of Helyem Egyesület, Hungary) together presented the work of F.I.N.E. in times of pandemic in the two countries. Dr. Inga Warren was with them in a recorded video message (below). The purpose of the plenary presentation was to show the model of good practice to other patient organizations. It was an honor for us to receive this invitation from EFCNI. The award given by EFCNI for the implementation of the project and the creation of the e-learning platform during the pandemic came as a huge surprise. We did not expect our work to be appreciated at such a high level. We sit at our desks every day thinking that our activity counts at a level that we cannot reach immediately, but the result is that there will be fewer children with disabilities in a few years, fewer families burdened by the markings of prematurity, more medical staff who go to work with confidence and satisfaction.

The project “Pui de om in terapie” received the Jury Prize for the “Project of a Patient Association with the Highest Impact” category – the 2018 COPAC Gala and the EFCNI Award at the Parent Organization Summit in Germany for the 2018-2020 activity.

Steps towards the future

We aim to facilitate access to F.I.N.E. Level I trainings for all the medical staff from the 60 Level II and III wards throughout Romania, in which premature newborns or those with birth defects are cared for. We want to have as many F.I.N.E. Level II students as possible – a more advanced phase of the course, which involves mentoring by the UK team, and the successful formation of a medical staff in 2023 at Level III of the course – a phase that involves innovation in the field of neonatal care.

The focus for 2022 and 2023 is the implementation of the principles taught during the courses to ensure that change actually takes place and that we reach European standards of care.

To this end, we are working in parallel to attract donors, people who understand that intervention from the first moment is the recipe of a generation of future adults who can have an independent, healthy life.

We succeed because of them:

We thank EFCNI, Silke Mader, Dr. Inga Warren, Beverley Hicks, Trisha Bellingham, Emily Johnson, Dr. Camelia Vidra, Dr. Claudia Dobocan, Dr. Roxana Varga, Dr. Roxana Iliescu, nurse Sabrina Mocanu, Iulia Trif, nurse Raluca Băldean, Dr. Smaranda Nay, Eugenia Dobrescu, nurse Monica Petrusca (Scotland), Dr. Nora Silaghy (Germany), Dr. Iris Morag (Israel); companies: GE Healthcare Romania, AdlineSolutions SRL, Topanel SRL, Aimee SRL, Philips, SetSail SRL, Frati Buni SRL, Radu Climb SRL, Vitafoam SRL, Immo Anna SRL, Net Team SRL, Little Team Kindergarten, Octomiu SRL, Jolie Maison SRL, Cereal Flor SRL, Spot Light SRL and individual donors through the Direct Debit mechanism

*Written in May 2022