Perspectives | Health

Dying Without Knowing Why

By - 04.03.2024

The health sector remains inaccessible to Roma, Ashkali and Egyptian communities.

On February 19, a four-year-old girl from Gjakova died at the University Clinical Center in Kosovo (UCCK), two days after being taken there from the General Hospital of Gjakova. The case immediately received a great deal of public attention because of the ambiguity and conflicting statements relating to the circumstances of the death. These ambiguities immediately raised questions for me as an investigative journalist in the health sector.

Shortly after the news of the four-year-old’s death went public, her parents, Arjana Hajra and Haxhi Shala, spoke to the media and explained the course of events.

Hajra said that she initially took her daughter for a check-up at the family doctor in the Center for Family Medicine in Gjakova during the day due to her daughter’s health condition. Hajra continued, mentioning that her daughter had a fever and some marks on her skin, leading her to suspect that her daughter may have been beaten. After the visit, Hajra said the doctor prescribed a syrup for her daughter’s fever and then allowed them to go home.

“Give her this syrup and I believe it will pass,” she said the doctor told her.

Hajra said that despite following the doctor’s instructions and giving her the syrup as advised, her daughter’s condition showed no signs of improvement. Feeling concerned, Hajra said that later in the evening, they took the girl to the family medicine emergency unit. Following this, she was referred to the Isa Grezda General Hospital in Gjakova.

“’Don’t worry, it will pass, but if it doesn’t, take her to the hospital. Give your daughter to your husband and let him take her outside for some fresh air,'” she said they told her the second time. Hajra returned home with her daughter and husband. However, after seeing that their daughter’s condition was deteriorating they returned to the Gjakova Hospital. At the hospital, Hajra was instructed to “go upstairs,” and the staff upstairs told her “go downstairs,” then again the staff downstairs told her to “go upstairs.”

As they waited for the doctors, a wait that Hajra mentioned lasted approximately four hours, she said that her daughter’s condition continued to deteriorate. Eventually, the girl was intubated and transported by ambulance to UCCK. Despite the fact that parents begged to accompany their daughter in the ambulance, they were not allowed. Nevertheless, the parents found a solution and went to their daughter at the Emergency Center in Prishtina.

Throughout all this, the parents were not informed about what was happening to their daughter. They were left in the dark regarding how their daughter was suffering or what she was suspected to be suffering from.

Melisa Shala, who passed away, was from the Egyptian community. The Kosovo police announced that they informed the prosecutor’s office about the case and have initiated an investigation into her death.

Following the statements made by the parents, there was a significant public outcry regarding the case. On February 21, the Human Rights Network, which is made up of seven non-governmental organizations, expressed their concerns. The statement highlighted that “a young 4-year-old girl lost her life under circumstances that suggest a grievous lapse in medical care and potential discrimination,” adding that the allegations suggest inadequate medical response and raise questions about other factors such as ethnic discrimination. Concerns have also been raised regarding the transportation of Melisa in an ambulance without a caretaker. The Ombudsperson Institution has also announced that it will investigate the case. The General Hospital of Gjakova released a statement on the progression of the case. Moreover, the Clinical Service of Kosovo (UHCSK) and UCCK issued a press release appealing for refrain from speculation on the causes of death until the results of the investigation are available.

Meanwhile, various pieces of evidence shedding light on the circumstances of the case started to emerge. One significant revelation was that the four-year-old girl had died as a result of an infection. However, the similarity between the accounts given by Melisa’s parents and the experiences of other parents from the Roma, Ashkali and Egyptian communities underscores the necessity for health institutions to rethink their practices. In my experience covering the health sector, it has become evident that these practices are consistently unfavorable for these communities.

Something was off

As the authorities continue their investigation into the case, the accounts provided by Melisa’s parents about their experience in Gjakova, such as wandering around the hospital, waiting and the lack of communication show a unclear situation regarding the treatment process.

This lack of clarity, primarily caused by inadequate communication and ambiguity from the medical staff, as indicated by the parents’ statements, is not an isolated case. After listening to Melisa’s parents’ interview, the treatment they described receiving in Gjakova was similar to other cases I encountered when working on “Lives lost too soon” in 2023. That investigation addressed the high infant mortality rates among the Roma, Ashkali and Egyptian communities.

One such story is that of Kasandra and Aziz Mekolli from Obiliq. Their daughter Xheneta passed away in 2021, just two months after being born.

Kasandra had delivered Xheneta by cesarean and both had been released from the Gynecology Clinic at UCCK in good health. However, the joy of returning home did not last long. Xheneta fell ill after a few days and was initially taken to the village medical center before being transferred to the Main Center of Family Medicine (MFMC) in Obiliq.

Aziz said that they weren’t received well there. According to him, the doctor who examined Xheneta refused to touch her.

The medical check-up was only conducted after Aziz protested. Following this, the parents took their child for a check-up at UCCK, where she was again discharged and sent back home. The next morning, Xheneta died. Aziz and Kasandra do not know why their child died. “They didn’t explain anything to us,” said Kasandra.

Mentor and Rukije Berisha from Obiliq do not know why their child died just seven days after being born in 2019.

27-year-old Mentor said that he could not understand the doctors because they spoke in the standard dialect. “I only understood a little of the grammar they used. I think it was something about a heart attack, honestly I don’t know for sure,” said Mentor.

Rukije also does not know the reasons for her son’s death. “They didn’t tell us,” she said, referring to the doctors. Both parents said that they were warned about some potential problems the child might face after birth, but the specific nature of these issues was never clearly explained to them.

Despite this, the baby was discharged from the hospital. The parents said they were given a letter instructing them to take their child for a medical check-up at a private hospital. However, they did not have the financial means to go to the doctor to a private hospital. They went to the MFMC in Fushë Kosovë for treatment when, in fact, they were supposed to go to the specialist Neonatology Clinic at UCCK. They were not informed about this beforehand.

The medical staff at MFMC in Fushë Kosovë referred Omer to UCCK the same day, but it was too late. Seven-day-old Omer died in the ambulance on the way to the hospital.

These recurring experiences among Roma, Ashkali and Egyptian patients share a common theme of a clear lack of information about their health status and ultimately, even about the causes of death.

In none of these cases did medical personnel ensure that patients or their families clearly understood the diagnosis, the potential risks or the prescribed therapy. In general hospitals, it is the responsibility of the doctor or the head of the medical team to inform family members. However, in many cases, families do not receive the appropriate information. This lack of communication violates the Patients’ Rights Charter and the Law on the Rights and Responsibilities of the Kosovo Residents in the Healthcare.

This is a weakness of Kosovo’s healthcare system.

The same happened in Melisa’s case. During the doctor’s check up, the girl’s mother, lacking medical knowledge, misinterpreted the marks on her child’s skin as having come from a possible beating. It’s understandable for someone without medical knowledge to make such a deduction, but it is incomprehensible that the medical staff faced with the patient’s medical history and check-ups failed to diagnose or at least suspect the cause of the marks on her skin.

The fact that Melisa's case raised immediate suspicions about potential ethnic discrimination should alarm health institutions. These doubts do not arise without reason.

Even Melisa, like Xheneta, was initially diagnosed with the flu and then discharged at her first check-up at the MFMC. In fact, a deadly infection was spreading throughout her body. As reported, Melisa died from septic shock resulting from meningococcal septicemia, which is caused by the bacterium Neisseria meningitidis, also known as meningococcemia. 

Meningococcal septicemia occurs when bacteria enter the bloodstream and multiply, damaging the walls of the blood vessels and subsequently causing bleeding into the skin and organs. Children and those over 65 years old are at highest risk of meningococcal septicemia. This disease can lead to fatality within hours. Early detection could have been possible if the child was given a blood test right from the beginning.

Equally concerning is how the Roma, Ashkali and Egyptian patients are often discharged by the medical staff without further consultations or diagnostic procedures such as blood tests or medical imaging. Regardless of whether Melisa’s treatment was overtly racist, Kosovo’s health system should be reassessed and address recurring instances of exclusion experienced by the Roma, Ashkali and Egyptians communities.

The fact that Melisa’s case raised immediate suspicions about potential ethnic discrimination should alarm health institutions. These doubts do not arise without reason. When considering the accounts of Melisa’s parents alongside other statistics regarding the access of the Roma, Ashkali and Egyptian communities to quality health services, it becomes evident that there are significant concerns. This should make healthcare institutions take a step back and reflect on their inclusivity.

The Roma, Ashkali and Egyptian communities have unequal access to health care

The necessary reflection can start with the Ministry of Health (MH) addressing the complaints that they accept. In the 2023 annual report of complaints, the MH indicates that it has received a total of 214 complaints addressed to health institutions. Of them, 71 (33.17%) are related to unethical professional behavior; 38 (17.7%) are related to the lack of personnel at work; 12 or about 5% for the lack of medicines and 93 (43.45%) are classified as “various.” According to the report, the MH has taken action against only five cases — a fine, prohibition of promotion and oral reprimand, while 125 complaints have not been dealt with at all.

The Roma, Ashkali and Egyptian communities face significant barriers in accessing healthcare. The 2022 European Commission Kosovo report states that the Roma, Ashkali and Egyptian communities continue to suffer from poor health due to limited access to health services.

Moreover, the 2022 National Research on Anti-Gypsyism in Kosovo carried out by the Terres des Hommes organization highlights that one of the manifestations of discrimination against members of the Roma, Ashkali and Egyptian communities is the lack of access to health care. The report, based on 1,065 interviews conducted across 38 municipalities with citizens of different ethnicities, also notes that health care workers use hateful language and pejorative names against members of the Roma, Ashkali and Egyptian communities. According to the report, 64% of Roma, Ashkali and Egyptian respondents either tend to agree or completely agree with the statement that “Doctors and health personnel often refuse to provide services to Roma, Ashkali and Egyptian citizens.”

This directly affects the quality of life and well-being of these citizens and their access to the fundamental right to life. According to the Multiple Indicator Survey (MICS) from 2015 to 2020, Roma, Ashkali and Egyptian children have limited access to medical services. According to MICS, the under-five mortality rate among children in Kosovo is 16%, while this rate significantly higher — 27% — among children from the Roma, Ashkali and Egyptian communities.

Even when faced with limited access to public services and discrimination or when subjected to hate speech or derogatory terms, Roma, Ashkali and Egyptian citizens often do not report such cases due to a lack of trust in institutions. State institutions must urgently address the question of where this mistrust comes from. The deaths of children in circumstances such as Melisa, Xheneta and Omer should never be repeated and no parent should be left in the dark about what happened to their children. 

Feature Image: Majlinda Hoxha/K2.0