Roman Marabian: Helping children despite everything

Meet the partner of the “Global2000 for Children of Ukraine” Foundation – the Municipal Non-Profit Enterprise of the Kkarkiv Regional Council, “Regional Clinical Center for Medical Rehabilitation and Palliative Care for Children ‘Hippocrates’” – http://hippocrat.org.ua/

History of the Institution  

The center was founded in 1918 as an orphanage. Its name and activities changed several times. In 2021, the institution experienced a rebirth, receiving a new name and establishing its focus – rehabilitation and palliative care for children in Eastern Ukraine.  

The story of Roman Marabian, the director of the Center “Hippocrates”, is even more compelling. Roman gave the orphanage a second life with a different focus. But let’s tell it step by step.  

Roman began his career as an orderly at Kharkiv’s emergency hospital, later becoming a pediatrician and eventually a doctor in a children’s hospital. He deeply cared for his patients and spent a lot of energy fighting systemic issues.  

“When my dedication to fairness, truth, and improving healthcare annoyed ‘the leadership of my hospital,’ they decided to ‘get rid of me.’ In 1997, I was offered to head the orphanage at the time. My task was simple: put this regional institution in order, which I did and continue to do. Over time, I became an advisor and expert to various presidents and Cabinets of Ministers on reforming the orphanage system. I was the first to state that all 40 orphanages should become centers for medical rehabilitation and palliative care for children. This decision was eventually adopted at the state level – one of my contributions to fighting the system, which I continue to pursue,” says Roman.  

The institution’s new name encapsulates its mission. The Regional Clinical Center for Medical Rehabilitation and Palliative Care for Children “Hippocrates” helps children and parents in the Kharkiv region. Since 2014, children from Luhansk and Donetsk regions have been admitted for rehabilitation. The center also serves as a clinical base for three universities: Kharkiv National Medical University, the National University of Pharmacy’s Rehabilitation Department, and V.N. Karazin Kharkiv National University.  

“We created classrooms for students and a lecture hall. The idea was to promote a conscious attitude in society towards effective support, rehabilitation, and treatment of sick children. Not the outdated Soviet methods like oxygen cocktails and massages, but real rehabilitation as practiced in the civilized world. We must all understand what palliative and hospice care are, how they differ, and how teamwork can support not only the child but the whole family,” says Roman.  

Key differences between palliative and hospice care  

The primary distinction is that palliative care supports patients during the course of a life-threatening illness, whereas hospice care is exclusively for the end of life.  

Until 2022, the center focused on two main areas: medical rehabilitation and palliative care.  

Rehabilitation Department  

Specialists at the center have trained in leading medical centers in Ukraine, Western Europe, and the United States.  

“Our patients are young children with severe organic and genetic pathologies of the central nervous system. The priority is improving the quality of life for the child and their family by developing and implementing rehabilitation programs,” Roman recalls.  

The center’s rehabilitation model is based on modern global approaches emphasizing comprehensive, multidisciplinary, family-centered interventions. These aim to foster child development, prevent disability, provide psychological support, and adapt the environment.  

“The British model of palliative and hospice care is among the best in the world. I asked the British how long it took them to build an effective system for children. Their answer surprised me – they worked towards it for nearly 25 years. In our country, it looks like this: the ministry issued an order, within a year the cars went all over the country, and the child was lying there, no one needed him without real high-quality help, and he is lying there, because the state approached the solution of this problem formally, unfortunately” shares Roman.  

Palliative Care Department  

Palliative care is a field of medicine involving a comprehensive approach (medical, psychological, social, and spiritual) to a terminally ill child, aimed at improving their quality of life and supporting their family.  

“It’s an active and holistic care for the child’s body, mind, and spirit, along with family support. It begins at diagnosis and continues regardless of whether the child receives treatment for the underlying illness. Specialists must assess and alleviate the child’s physical, psychological, and social suffering. All children need care, safety, play, understanding, and love. In Ukraine, we lack a culture of saying goodbye, but severely ill children need simple, age-appropriate information about death. Families, especially siblings, should know how to cope with loss and grieve. Adults often don’t know how to do this themselves, which is why specialists are crucial,” says Roman.  

Even during the full-scale war, as Kharkiv is bombarded daily, the center remains operational.  

Plans and dreams  

Before the war, up to 500 families underwent a two-week rehabilitation course with accommodation at the center annually. The mobile palliative team supported 60 families. This was possible at the expense of the regional budget.

Pre-invasion, the “Hippocrates” team outlined the following plans on their website:  

– Create a support program for all families in the Kharkiv region with children with disabilities, involving local experts and authorities.  

– Establish a coordination center and collaborate with providers of palliative and rehabilitation services in the region.  

– Open a respiratory support department for children with chronic, incurable illnesses requiring oxygen.  

– Build a swimming pool for children with disabilities at the center.  

– Further develop high-quality palliative and hospice care, including end-of-life care.  

Due to the war, the swimming pool project was postponed in favor of building a functional and inclusive bomb shelter. The “Global2000 for Children of Ukraine” Foundation helped purchase a special lift for wheelchairs to ensure all children could access safety.  

“Someday we will win. But we can act even during the war, so our plans remain. We want to audit all families in the Kharkiv region with severely ill children to understand their needs and locations. Then, we’ll create an interactive map highlighting available resources in each community. After that, we’ll work with family doctors to inform them about international standards of pediatric palliative care and nearby centers. Local authorities must also understand how to allocate funds for these families. It’s not just direct work with the child and family but a contribution to the overall system. However, I can’t do it alone anymore. My only dream is for sick children and their families to be happier and more capable. I hope to see it happen in my lifetime,” shares Roman.  

To realize Roman Marabian’s dreams, we need compassionate individuals:  

– Doctors and physical therapists  

– Psychologists and lawyers  

– Advocates for the rights of children with disabilities and their families  

– Specialists in informational campaigns to promote these critical issues among parents, healthcare workers, and authorities  

– Website developers to ensure maximum accessibility of useful information  

If you are ready to join this dream for the happiness of children, write to: domdetki@ukr.net