Lives lost too soon
The health system is not ready to address the high infant mortality rate.
Two-year-old Omer is the youngest child of the Berisha family from Obiliq. He was named after his brother, who died in 2019, just seven days after birth. Mentor Berisha, 27, has never learned why his first child died. He thinks that it was something related to the heart, but he never understood the actual reasons.
Mentor, his 23-year-old wife Rukije and their three children live in the Obiliqi i Vjetër neighborhood, which is mainly inhabited by members of the Roma, Ashkali and Egyptian communities. Rukije also does not know the reasons for her son’s death. “They [the doctors] didn’t tell us,” she said. She had a good pregnancy. She mentioned that she was prescribed some medicines by her doctor. 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.
After birth, the baby was vaccinated at the Gynecology Clinic at the University Clinical Center of Kosovo (UCCK) with the first vaccine according to the Immunization Calendar. This is the official calendar from the National Institute of Public Health of Kosovo (NIPHK), which outlines all the vaccines that children must receive from birth to the age of 18, according to the Law on the Prevention and Combating of Infectious Diseases.
Rukije and her baby were discharged from the hospital following routine procedure. On the seventh day after their child’s birth, the Berisha couple, who at that time lived in the 28 Nëntori neighborhood in Fushë Kosova, took their son to the Main Family Medicine Center (MFMC) due to postpartum problems with his umbilical cord. It was not clear to them what the problem was, but they were worried because of earlier warnings about their baby’s health.
However, there are no pediatrics and neonatology specialists at Fushë Kosova’s MFMC. There, children’s visits are done by family doctors and teams of nurses who carry out home visits for mothers and children up to the age of three.
The structure of the health system
The Law on Health separates the health system into three levels: primary, secondary and tertiary. MFMC is a primary level institution. Institutions of this level are organized based on Administrative Instruction (AI) 04-2020. According to the AI, primary institutions can only have a specialist in family medicine, a doctor of medicine, a doctor of dentistry and a specialist in pediatric dentistry and preventive medicine. Therefore, patients who need specialist visits are instructed for checks at the secondary level, which are general and tertiary hospitals — UCCK. Since there is no general hospital in the region of Prishtina, patients are directed to check-ups in the ambulances of the UCCK clinics.
The Berisha couple said that the medical staff at the MFMC immediately referred Omer for a same-day specialist check-up at UCCK, but it was too late. Seven-day-old Omer died in the ambulance on the way to UCCK. “In Prishtina they tried hard to save him, but it was too late,” said Rukije. “We were so happy to have a son, but he did not have the luck to live,” said Mentor.
Omer was transferred to UCCK in a regular ambulance as there is no neonatal transport in Kosovo. Ambulances for adult patients do not have incubators or other equipment necessary for the resuscitation of infants.
Without incubators and without neonatal transport
Vlorian Molliqaj from AMC said that his organization has helped UCCK and the seven general hospitals with transport incubators. Additionally, in cooperation with Dartmouth College in 2016, they implemented a project to support UCCK and general hospitals for the introduction of neonatal transport. For this, medical staff training was held and preparations were made for protocols and the data system. The project was suspended due to the lack of compatible ambulances for incubator transport.
In 2019, an ambulance was purchased for neonatal transport, but it did not meet the requirements because it was not compatible with the incubator. This year, the tender for the purchase of an ambulance failed in the MH due to a lack of responsible offers. The MH said that it will be re-tendered.
It is impossible to attribute Omer’s death to the lack of neonatal transport as there is no information on the specific causes of his death. However, according to the Guidelines for Neonatal Transport compiled by the Ministry of Health (MH) in 2018, the lack of adequate transport often leads to infant fatality.
Kasandra and Aziz Mekolli from Obiliq also lacked information about their child’s condition. Their daughter Xheneta passed away two years ago, just two and a half months after birth. 23-year-old Kasandra, who has undergone a total of four cesarean births, said that her pregnancy went well and she had four visits to the Gynecology Clinic at UCCK. After the birth, the mother and baby were released from the hospital according to regular procedure.
Child mortality rates in Kosovo according to different sources
According to the EU:
– 16 in 10,000 children die before they turn five years old.
According to NIPHK:
– 8.7 in 10,000 children die before they turn one year old.
According to MICS:
– 15 in 10,000 children die before they turn one year old.
– 26 out of 10,000 children from the Roma, Ashkali and Egyptian communities die before they turn one year old.
– 11 in 10,000 children die before they turn one month old.
– 21 in 10,000 children from the Roma, Ashkali and Egyptian communities die before they turn one month old.
Aziz said that when Xhenata fell ill, she was first sent to the village medical center and then to Obiliq’s MFMC. Aziz and Xhenata were not received well there. According to Aziz, the doctor who examined Xhenata refused to touch her.
“[As if] she was annoyed to touch her. She just looked at her from afar and said ‘it’s fine, but you have to take the baby to the hospital.’ I knew the baby wasn’t well,” said Aziz. “I also heard some nurses say ‘magjup,'” he added, referring to a racial slur used towards members of the Roma, Ashkali and Egyptian communities.
He was appalled by this and started protesting to the doctor, expressing his concerns about the lack of medical care for his daughter. “I lost my temper a little and the doctor made me leave,” said Aziz. His cousin stayed with Xhenata.
After the medical check-up, Aziz took Xheneta to UCCK, where she was subsequently discharged and allowed to go home. At that time, the Mekolli family did not have a house of their own and lived in a metal shed. That evening, they went to bed as usual, wrapping Xheneta in a blanket so she would not get cold.
Xheneta usually woke up in the morning to be breastfed, but that dawn, she did not move. Makolli said he noticed that something was wrong with the baby and called his wife immediately. Then they both noticed that Xheneta was bleeding from her nose. Around 8:00 a.m. they took her to the doctor in Obiliq again, but Xheneta had passed away. Aziz and Kasandra do not know why their child died. “They didn’t explain anything to us,” said Kassandra.
High infant and child mortality rates in Kosovo
Xheneta and Omer are two infants, among many others in Kosovo, who died before their full lives began. According to the 2023 European Commission (EC) Report on Kosovo, infant and child mortality is triple the European Union (EU) average and the highest in the region.
Several factors contribute to the high infant mortality rates in Kosovo. However, official data focuses on diagnosed causes rather than the health care system’s capacities and resources to address these issues.
According to this data, ethnicity is also a factor in the mortality rates. Roma, Ashkali and Egyptian infants and children face greater barriers in accessing health services. On top of this, Kosovo’s high infant mortality rate is generally influenced by shortcomings in the health system, ranging from issues in diagnosis to a lack of capacity to treat underlying causes.
There is a lack of early and comprehensive diagnosis of newborns in Kosovo’s health care institutions. In countries with developed health systems, infants undergo a screening right after birth to diagnose health conditions. This includes blood tests for hereditary diseases and disorders, hearing and heart problems. While this test has not yet been implemented in Kosovo’s health care institutions, there is a budget of 140,000 euros allocated for the National Program for Neonatal Screening over the next two years. This program is one of the actions aimed at reducing infant morbidity and mortality in accordance with the Strategic Plan for Maternal, Child and Reproductive Health (SPMCRH).
Multiple Indicator Cluster Surveys (MICS) 2015 – 2020
-Over 16% of babies born in the public sector have not had their cord checked;
-over 26% did not have their temperature measured;
-about 28% have not had their weight assessed;
-close to 45% did not receive information about symptoms that require care.
-6% of newborns did not have postnatal health visits after discharge from the hospital;
– 16% of newborn children in the Roma, Ashkali and Egyptian communities did not have postnatal health visits after discharge from hospital.
– 63% of the women of these three communities did not have any health visits after being released from the hospital after giving birth.
– All women in the general population have had more than four prenatal medical check-ups, while in communities this figure drops from four to three.
According to Mirnie Gojnovci, midwife and coordinator for home visits in the municipality of Fushë Kosova, five regular visits are made to a newborn child up to the age of three. For example, in the first week, nurses check the infant’s fontanelle (the soft part at the top of the head), feeding, weight, measure hamstrings, reflexes and share tips about nutrition and general health.
According to the Multiple Indicator Cluster Surveys (MICS) from 2015 to 2020, not all children have received these basic health checks. The survey also indicates that access to these medical services are lower among members of the Roma, Ashkali and Egyptian communities.
The European Commission’s 2022 report on Kosovo states that the Roma, Ashkali and Egyptian communities continue to suffer from poor health because of limited access to health care services. Obstacles mentioned include “poverty and the inability to pay for treatment and the purchase of medicines, as well as the lack of medical personnel and mobile teams, public transport and identification documents necessary to receive public services.” According to the report, members of the Roma, Ashkali and Egyptian communities often choose not to report cases of limited access to public services, discrimination or instances of hate speech due to lack of trust in public institutions.
Ferdane Asllani, director of Balkan Sunflowers Kosova, an organization that advocates for the rights of the Roma, Ashkali and Egyptian communities, said that these communities face significantly more challenges in health care institutions. She also shared an experience from her family: an infant contracted an infection during birth and the UCCK medical staff insisted on sending it home. Asllani said that upon seeing the infant’s poor condition, the family requested further treatment at the Neonatology Clinic. The child received treatment for a week in this clinic.
Asllani considers it necessary to expand the program for home visits and to improve the approach of the medical staff toward patients, providing them with detailed information about their health.
The SPMCRH Strategic Plan aims to improve the quality of maternal and child health services as well as reproductive health across all levels of health care. The plan includes specific targets, such as reducing infant mortality from 15 to 10 per 1,000 by 2024. Additionally, the goal is to lower perinatal mortality, which currently stands at 10%, to below 6% by 2025.
However, the strategic plan is based on incorrect data. Collecting official data on the causes, factors and statistics of infant mortality at a national level is difficult due to insufficient reporting by the relevant institutions. According to the European Commission’s 2023 report on Kosovo, about 33% of the causes of death are either incorrectly reported or undiagnosed.
According to the reporting model, Kosovo’s health care institutions input data on mortality rates into the Health Information System (HIS). The reporting of this data is done at the local, regional and central levels. The HIS database is administered by the MH and the NIPHK. The latter identifies and analyzes all relevant indicators for determining health status.
But institutions do not always report this data in full, leading to inaccuracies in the NIPHK reports and analyzes and more broadly in the MH’s strategies.
The NIPHK’s perinatal reports show significant differences in the state of prenatal care during childbirth and care for newborns between the years 2018-2019 and 2020-2021. In 2019, the rate of infant mortality was approximately 8.7 cases under one year old per 1,000 births, while a year later the number dropped to three. The compiler of the report, Dr. Sevdie Spahiu, acknowledges that this figure is not accurate. According to her, this significant decrease is the result of health care institutions not reporting in the HIS.
Merita Vuthaj, who leads the Division for Mother, Child and Reproductive Health within the MH, said that mortality data is not completely accurate due to non-reporting by health care institutions. She also said that they do not have data on other indicators such as causes, diseases and mortality factors. According to her, one of the main causes of infant mortality are conditions related to the perinatal period — stillbirths and early neonatal deaths aged 0-28 days.
For international comparisons, the World Health Organization (WHO) uses samples of infants weighing over 1,000 grams. Vuthaj said that, according to this criterion, infant mortality in Kosovo is about 10 per 1,000 births. However, for comparisons at a national level, data is collected for stillbirths weighing more than 500 grams. With this calculation, according to Vuthaj, the mortality rate can be doubled to 20 per 1,000 births.
Lack of pediatric cardiac surgery in Kosovo increases infant mortality rate
According to the Kosovo Agency of Statistics (KAS), congenital heart defects are one of the most frequent causes for infant mortality. There is a lack of pediatric cardiac surgery in the country, as there are no pediatric cardiac surgery specialists. Treatment of heart problems in pediatric cases is carried out primarily through humanitarian missions of foreign doctors and abroad.
Bjord was born with heart problems on November 13, 2020 in the gynecology department at the Gjilan General Hospital. He was released from the hospital three days later. When he was discharged, the doctors stated that he was in good health, but in reality, that was not the case. He ultimately was treated in Türkiye, but unfortunately did not survive.
Bjord’s father, Alban (name changed per request), said that his wife began to suspect that something was wrong with the baby when she noticed that Bjord was not eating properly and was always sleepy.
A week after being released from the hospital, Bjord’s parents took him to a doctor in the private sector. There, the suspicions of heart problems were confirmed and Bjord’s parents were instructed to send him to a pediatric specialist in Prishtina for diagnosis.
Six neonatologists work in the Gjilan Hospital. Their head, Blerim Bajrami, neonatology specialist, said that they diagnose cases with a pulse oximeter, a device for measuring the level of oxygen in the body. In some cases, like Bjord’s, they are referred to be sent to the UCCK.
“In some cases, it is difficult to detect heart problems in the first week because the baby does not show clinical signs. The child is healthy, the saturation and heartbeat are fine. Later, when they returned, they noticed noises in the heart and a drop in saturation,” said Bajrami.
He said they attended training last year on the use of ultrasound to diagnose issues with the brain, abdomen and hamstrings, but they also need additional training on heart problems. He stated that they requested training from the hospital directorate last year. However, the directorate denies having received such a request when asked by K2.0. The director, Arsim Emini leaves the responsibility to request training to the doctors.
The doctor at UCCK found that Bjord had two coronary artery abnormalities and suspected a hole in the heart.
“This was the moment when everything turned upside down. A great joy was turned into a great sadness. We had no choice but to pray to God and the doctors,” said Alban.
Humanitarian missions by foreign doctors have increased in recent years. These doctors come to UCCK to treat some elective pathologies, while for more serious and urgent cases, referral to be treated abroad is needed.
After the diagnosis, Bjord was also referred for treatment abroad with a 30,000 euro pledge from the Health Insurance Fund (HIF).
Health Insurance Fund
The Health Fund was established on the basis of the Law on Health Insurance, approved in 2016, and provides health care services to patients outside public health institutions inside and outside the country. This service is carried out on the basis of Administrative Instruction (AI) 03/2023. Diagnoses that are not treated in public health institutions are foreseen in this AI, and are accompanied by a reference price. Citizens can benefit up to 30,000 euros within the year. In urgent cases, the HIF issues a pledge by which it guarantees that it will make the payment for the patient’s treatment.
HIF was audited by the National Audit Office (NAO) a few months ago. The report identified many irregularities in the management of cases, the issuance of pledges and the processing of payments. This institution has over 28 million contingent liabilities (possible liabilities from previous years) to private hospitals inside and outside Kosovo. Mostly, the hospitals are in Türkiye. The media outlets have reported on many irregularities in the invoicing of services of Turkish hospitals to Kosovar patients who were treated through the MH budget. For this reason, a director of HIF was dismissed.
Within a few days, Bjord and his parents traveled to Istanbul. Alban said that the hospital was chosen by an agency located near the HIF office. To access services outside public institutions, citizens must obtain a referral form signed by three UCCK doctors and submit three invoices from private hospitals. HIF officials then select the invoice with the best price.
The money allocated by HIF was not enough for them. The 30,000 euro pledge only covered three weeks of hospital stay, but the treatment lasted four months because operations that were supposed to be performed did not go according to plan due to Bjord’s health condition.
In the first operation, the arteries were repaired, but the child suffered a cardiac arrest and the medical staff connected his heart to an external pacemaker. The doctors then waited three weeks to perform the second operation to place the pacemaker inside his body.
“The doctors told us that after a week we would be allowed to go home. But this continued for two and a half months. Our son contracted an infection,” said Alban. The family was forced to take out loans and credit, and then made a public appeal for financial assistance. Alban said that his debts for this are around 15,000 euros.
According to Ramush Bejiqi, a specialist in pediatric cardiology at UCCK, Kosovo does not differ from other countries in terms of the number of children born with heart problems. The World Heart Association reports that worldwide, one in 100 children is born with heart problems. Although there is no accurate data for Kosovo, according to the KAS report, 13.4% of the 172 babies who died in 2020 did so due to congenital birth defects, deformities and chromosomal abnormalities.
Bejiqi said that complex heart diseases requiring urgent intervention are one of the main causes of mortality of neonatal infants aged 0-28 days in Kosovo.
“Every year in Kosovo, about 120 children with heart problems are born and need to be treated. About 70-80 of them are not urgent cases and can be treated at UCCK by foreign doctors, while the rest have more complex problems that require urgent intervention,” said Bejiqi.
Most of these heart problems can also be diagnosed during pregnancy through a fetal scan. Teams of multidisciplinary doctors use diagnostic equipment to identify potential health issues for mother and unborn baby during pregnancy. For this, several trainings have been held in the private sector with local and international lecturers. The UCCK Gynecology Clinic started a fetal medicine program this year, aiming to train doctors in the early diagnosis of health issues in mothers and unborn babies. This program was made possible with support from the Government of Greece.
According to Bejiqi, collaborating with gynecologists to diagnose fetal conditions during pregnancy enables the proper planning of childbirth. This approach ensures immediate treatment post-birth, minimizing potential consequences.
The action plan of the Strategic Plan for Maternal, Child and Reproductive Health includes the “Establishment of the fetal unit” to facilitate the diagnosis of issues in both mother and baby during pregnancy. The training program for this unit has started at the UCCK Gynecology Clinic with support from the Greek Government. However, the document does not indicate the amount of the investment.
In September 2023, a team of doctors from Türkiye treated 38 children with heart problems at UCCK. These doctors came to Kosovo with the support of the U.K.-based Muntada Aid organization. In November, another team of cardiac surgeons and cardiologists came from the U.S. through the Gift of Life International organization to treat other children.
The director of Neonatology at UCCK, Hajrije Ismaili, who collaborates with Bejiqi for the diagnosis of children with heart problems, said that the lack of pediatric cardiac surgery service makes it difficult to treat these cases.
Bejiqi suggests that in order to establish a specialized pediatric cardiac surgery center in Kosovo, proper planning should be done over the next five to six years. However, according to him, this is not happening.
Alban said that he never received comprehensive information about his son’s condition from the staff at the Turkish hospital. The information they did receive was translated into Albanian, but was incomplete.
“When they released us, they told us that the infection had been cured,” he said.
Alban returned with Bjord to Kosovo, but after a few days, the problems started again. Bjord was sent to Gjilan for a medical visit and after some tests, Bjord’s parents were once more instructed to send him urgently to the Pediatric Clinic at UCCK. Three days later, Bjord was placed in intensive care and intubated due to the worsening of the infection.
Four weeks later, Bjord died. “He was born on the same day as me. I am devastated and his death was shocking for us,” said Alban. “I didn’t have the chance to enjoy parenthood. I never saw my son smiling. He was always receiving infusions and medicines.”
Alban and his wife have since divorced. “Both of us suffered from depression and we were sleeping apart. We constantly blamed each other even though I know it was not our fault. Now I am afraid of becoming a parent again, even though I adore children. I consider them a blessing.”
Cases like Bjord’s, Omer’s and Xheneta’s expose numerous shortcomings in Kosovo’s health care system concerning the care of newborn babies, including providing regular check-ups, diagnosis and treatment. These shortcomings disproportionately affect babies from the Roma, Ashkali and Egyptian communities — communities that are also widely discriminated against in other spheres of life. Moreover, the lack of accurate official data due to non-reporting by institutions could harm the effectiveness of national strategies aimed at addressing these deficiencies.
Feature Image: Bujar Vitija
This article is part of the Human Rightivism project, which is funded by the Embassy of Sweden in Prishtina, implemented by the Community Development Fund through its Human Rightivism Program. The author’s views expressed in this publication do not necessarily reflect the views of the Embassy of Sweden in Prishtina.