Babies die due to bureaucratic obstacles

Petar is a young, 30-year-old man from a town in Macedonia. We met him to tell us the agony he went through trying to ensure prompt transport for operation of his newborn in Bulgaria.

He excitedly tells what mazes he went through in those 7 days after the birth of his second child, who immediately after his birth had heart defect detected and a breathing problem.

Petar’s baby is one of 228 infants with heart or vision problems that were sent for operation abroad from 2010 to now.

SCOOP research shows that in the last 6 years (2010-2015) 228 babies aged from one day to one year were sent from Macedonia to treatment in 16 countries around the world, diagnosed with heart or vision problems.

According to the Health Insurance Fund, in 2010, 93 babies were sent to treatment abroad, in 2011- 27, 2012 – 62, 2013 – 14, 2014 – 28 and in 2015 until now 4 babies.

Hours, not days, crucial for babies’ rescue

– If you had come just two hours later, your baby would not have been saved – doctors told me at the Cardiac Surgery in Bulgaria – Peter says, happy that he managed to save the life of his now almost two years old child. But at the same time angry and irate at the health system and bureaucratic procedures in Macedonia, that babies die because of, as they do not arrive in time for emergency operations abroad or do not have enough connections to do what this young father suffered for his newborn.

Petar’s story cannot leave you without emotions: different feelings are mixed in it, at least I had such listening to Petar, what nightmare he was going through until his child went for a surgery abroad.

His case is remembered at the Skopje Clinic where the baby was hospitalized.

– The father was aggressive and argued with everyone at the clinic until the baby left for operation in Bulgaria. That is how we remember this case – they say from the Children’s Clinic in Skopje.

Petar’s just born baby, who in moments of detection of serious health problems with heart and breathing had no name, is just one of the dozens of newborn children who failed to receive documents and to leave for treatment abroad at the expense of the Health Fund.

However, some of the babies did not reach the final destination on time and died.

Statistics show that each year in Macedonia from 300 to 750 infants died and over 80 percent of them were hospitalized in some of the hospitals in the country.

From 1994 to 2013 in Macedonia died 6,993 infants. According to the State Statistical Office, which in July 2014 published the latest data on mortality, in 2013, as last processed year, 237 babies died. Of this figure, according to statistics, 226 infants were treated before death. Most, 66 babies, died in Skopje, 16 in Kumanovo, 15 in Tetovo, 10 in Veles, followed by other towns.

“My baby was born in the summer period, in a private clinic in Skopje. It is our second child and the labor was well. As soon as I came back home and started preparing for the party, I received an urgent call from the clinic that the baby had got complications with breathing and urgently needed to be transported to Children’s Clinic in the Clinical Center”- says Petar, explaining the beginning of the problems he faced.

Patients suffer in the “war” between public and private health

– I immediately returned to Skopje and then my ordeal began. At the Children’s Clinic where the baby was transferred they greeted me with a barrage of accusations that we wanted our children to be born in private clinics, and now, when complications occurred immediately they were brought to Children’s Clinic. The diagnosis was devastating, problems with the heart and respiratory organs, lack of oxygen in the body and therefore fast operation was necessary, which was not carried out in the country and the nearest clinic was in Sofia, Bulgaria, which had significant result in operations on babies and where many children had been sent so far – says Petar.

Although all lost and as he says, left alone in Skopje, he began urgent preparations to prepare the baby for the operation abroad. He organized a name to be given to the baby, to get a birth certificate, then a passport for a baby two days old and without that document he would not have been able to leave the clinic and the country.

The rate of children born with cardiovascular problems and who require oxygen support has increased in the recent period, they confirm from the Children’s Clinic in Skopje, where all such cases until 2013 were sent to operations in Bulgaria.

– There is an increasing trend in the number of heart disease in children starting from birth. In the outpatient department of pediatric cardiology and rheumatology annually are examined between 3,500 and 4,000 children. Of these, about 220-250 children are diagnosed with congenital heart disease. In 70 to 100 of these children cardiac surgery or intervention is necessary. A small proportion of these children is with severe heart defects and has respiratory problems requiring oxygen support. By 2013 these children were operated in neighboring Bulgaria, and now there is a possibility for the surgery in our country – explains Aspazija Sofijanova, director of the Children’s Clinic in Skopje.

Doctors from the Children’s Clinic see part of the reasons for increase in the number of malformations in the genetic factor, in parents’ behavior and education, but to a greater extent in the gynecologists who should early detect problems in babies.

They are stressing that the case of Petar’s baby would not have developed so if the gynecologist had detected heart fault on time.

– Such a problem must not be mistaken. This is a classic textbook example of failure in monitoring the pregnancy for which the parents had to be notified and a team to be prepared to intervene quickly and appropriately after the birth of the baby, so that we do not have such situations, parents to react against doctors at the Children’s Clinic, and not in the Clinic where pregnancy had been monitored – highlights a doctor from the clinic who followed the case of the baby after it had been transferred.

Taking a passport photo in intensive care

Petar says that during the procedure to take the baby to the operation in Bulgaria he faced seemingly minor, but obstacles at every turn.

– I submitted a request for passport issuance in urgent procedure in the Ministry of Interior, but I came across a problem: how to take a passport photo of a newborn? Employees in the field of passports instructed me to take the police photographer to take a photo of the baby in intensive care. So I did, I found the photographer who had already left the home, he took photos of the baby and we began the procedure to contact the Bulgarian clinic. We had to act quickly, because the baby was receiving therapy with oxygen, inserted in his body, but the therapy could be given up to 7 days, for longer it destroys lungs – explains Petar.

Pediatricians and cardiologists cannot confirm whether the drug which provides oxygen to the baby’s body must be given only 7 days. In contacts with them, within our research, they indicated the case of a baby with such problems successfully operated in Macedonia, which had been using this medicine for 45 days, until the operation.

Petar’s story yet started rumbling at the Children’s Clinic where, as he explains, director Sofijanova told him that the baby could not leave for operation in Bulgaria, but would have to wait for about a month and a half American surgeons to come who would perform the surgery in Skopje.

– I do not know how I controlled myself not to react even more vigorously. My world collapsed. Although signed by three doctors from the Children’s Clinic that the baby had to be urgently operated abroad, now, it all depended on the will of the director and her signature that she refused to sign, and every hour the life of my baby was shortening – says Petar.

In those few days he managed to use all his ties and communicate with the top people in the Ministry of Health, with people from the Health Fund and provide one of the directors who signed the baby to be taken to the operation abroad.

– The director of the Children’s Clinic not only refused to sign, but threw the papers on the floor, and said that the baby would remain at the clinic. At this point I do not know how I controlled myself not to make a larger incident. I did not believe that a person wearing a white coat could be so cruel and inhumane. I was ready to take the baby to Bulgaria by my own car. The Fund, although saying that they were working in urgent procedure, sought opinions of private clinics in Macedonia for the surgery, so once they were told that it was not performed here, they began international procedure – claims Petar.

The director of the Clinic, Dr. Sofijanova says that the opinion for treatment abroad is signed by a medical council of three doctors of the Children’s Clinic, the Department of Cardiology and surgeon Vladimir Chadikovski from the Clinic for Pediatric Surgery, upon prior opinion of the American team of Bill Novick Cardiac alliance Foundation that the Ministry of Health has contracted the operation of children in the country to avoid additional costs abroad.

– If these doctors believe that the child, because of urgency or intricacy of the operation, must be operated abroad, the signature of the director of this consultative opinion is just a formality. But if doctors and the surgeon believe that surgery is not urgent and the child can be operated in the country, and the American team of surgeons confirms it, we have no grounds to give consultative opinion. Firstly, because it is not legal, and secondly, because it is not fair on the other children – said Dr. Sofijanova.

The Health Fund, which ultimately implements the entire process and pays the treatment, says it relies on the opinion of competent doctors in the relevant field.

– The Health Insurance Fund of Macedonia, in deciding whether to refer the insured to treatment abroad, takes into account the medical documentation or consultative opinion on the health condition of the insured. After the treatment abroad is performed, health condition is monitored by competent health professionals, from a GP, medical specialists and university clinic that has issued the consultative opinion, they responded from the Fund to a SCOOP question.

Petar claims that it was not over even when he received the consultative opinion and the approval of the Health Fund for baby’s surgery in Sofia.

– When after a few days of begging and pressures, on the sixth day we managed to collect the documents and the opinions, from the Clinic they told me that they had no ambulance to transport the baby to Sofia. Then, the director of the clinic where the baby had been born called the director of Children’s Clinic and a vehicle was provided. I drove like crazy after the hospital vehicle to Sofia. The baby was operated, and after the surgery the doctor came out and told me that our baby had been lucky. “If you had come just two hours later, the baby would not have been saved” – the doctor said, Petar explains to me while I am trying not to meet his eyes because his story did not leave me indifferent.

Unfortunately, two babies who in that period from Macedonia were in the hospital in Sofia did not survive, says Petar.

From the Skopje Clinic they confirmed that during that period a baby died while being transported to Bulgaria.

– The baby was in a very critical condition. During the night the duty doctor resuscitated him several times at the Clinic, returned him to life. It was communicated to the parents, who signed to agree the entire risk the baby to be transported to Bulgaria. We did our best, virtually in every overpass we reanimated him, but unfortunately the baby died on the way – tells the doctor in charge of the transport of the baby on the way.

Director Sofijanova says that for every child for whom it was necessary to be transferred with a transport vehicle the treatment was approved, there were even cases when there was no approval from the Health Fund, but the children were transported to medical centers where they should be treated. In the present case, for this baby, emphasizes Sofijanova, a vehicle was provided with a doctor from the intensive care and nursing, and he was transported to Bulgaria.

– What I advocate for is simplification of bureaucratic procedures because children are most important to me – says Sofijanova.

From the Fund they again reply that the procedure for adopting a decision the insured to be treated abroad usually lasts 45 days, a period to complete the documents.

– Insured under the age of 1 who require treatment abroad, for whom there is no opportunity to be performed in health institutions in the Republic of Macedonia, immediately after the implementation of the procedure are referred to the necessary treatment abroad, they responded from the Fund.

During his stay in Sofia, Petar says that there was a need for additional drug that the baby had to receive, capsules that cost 500 denars, but they could be bought only in one pharmacy in Macedonia.

– My relatives in Skopje hardly found them and sent them. At that time my baby received capsules that remained from a baby from Macedonia who had died. We left the whole therapy that we bought in the hospital hoping to help another child. On our way back, a doctor from the Clinic told us that there was a bacteria at the Clinic so to take the child home, not to enter the clinic. That was what we did. Our child is now great, we continually have controls, we are happy how active he is, but at the same time sad as due to bureaucratic obstacles two babies from Macedonia have died – Petar ends his story.

There is no data about how successful operations on babies are

The Cardiac Clinic in Bulgaria, where babies from Macedonia who have heart problems are operated, is a public institution. One of the surgeons is Macedonian. However, there is no data how many operations have been performed at the Clinic in Sofia and what the success rate is. On the site of the clinic data can be found that mortality after performed operations is 8 percent.

The Clinic in Sofia did not respond to our questions about the number of children operated from Macedonia and how successful they were.

There is data neither at the Children’s Clinic on how many children were sent for surgery and how many of them were successfully operated.

– There is no statistical data on the success of operations in Bulgaria by 2013 at the Pediatric Clinic – says Dr. Aspazija Sofijanova.

According to the Children’s Clinic, by 2013 all children with cardiovascular problems were sent for treatment abroad, mainly in Sofia. From the second half of 2013 every child, for whom American surgeons give consent, is operated within their stay in Macedonia. From the Clinic they say children are put on lists for surgery and it depends on the child’s age and the type of intervention: some operations are performed immediately after birth, some between 4 to 7 months, and some when they are one.

– If we have a case that cannot wait for the US team, the child is immediately sent to surgery abroad. If the child is stable, he is sent with his parents’ vehicle or transport vehicle to Sofia. If in Sofia they think that it is a major surgery and are not able to perform it, the child is referred for treatment in England. There they travel by a commercial flight or by special medical flight in case of a severe patient. The entire procedure for emergency lasts not more than a week – they explain at the Children’s Clinic.

Since September 2013, after the arrival of American surgeons in Macedonia, 5 babies were sent to London for operation, as severe cases, one with medical transport. In that case, the Fund paid about 80 thousand pounds, but final prices depend on post operative treatment and stay at the Clinic in London.

In the same period, after 2013, ten children were sent in Sofia. Most of the children were transported by vehicle to the Clinic. The operations and stay cost between 20 and 30 thousand Euros.

According to the Health Fund data, from 2010 to now 228 babies were sent for treatment in Austria, Czech Republic, Belgium, Bulgaria, Germany, Greece, Croatia, Israel, Russia, Slovenia, Serbia, Turkey, Great Britain, Switzerland, USA, France and Italy. They all had heart or vision problems.

For the treatment of babies in 2011 were paid 1,755,205 Euros, in 2012 for treatment abroad were paid 1,697,438 Euros, in 2013 were paid 2,872,653 Euros, in 2014 were paid 2,824,118 Euros, in 2015 the Fund paid 744,555 Euros to treat babies abroad.

During this period a total of 9,893,969 Euros were paid to treat babies abroad.

In operations performed by US surgeons, a project which operates within the Ministry of Health and that includes three clinics: Children’s Diseases, Pediatric Surgery and KARIL, one death after surgery has been registered, while one baby died just before being prepared for surgery.

Doctors involved in the whole process of care, treatment and surgery of infants tell that they are under the constant pressure of work, largely understanding the anxiety and anger of parents, but few understand their position that they are here to intervene, to help to correct something that could have been corrected by proper monitoring of pregnancy or parental education.

– Can you imagine how I feel, as a person who spends the whole day in the operating theatre, does his best to save someone’s life, but not always succeeds in it, to face the parents, to announce that their baby died, to return back into the operating theatre and continue to operate some other case and at the end of the day to go home and face the family, and not to transfer the burden of work upon them. And we live with these problems – says one of the doctors involved in the operations of babies.

State statistics calculated that the most common causes of death among the Macedonian population are diseases of the circulatory system, followed by neoplasms, endocrine, nutritional and metabolic disorders and diseases of the respiratory system.

If you analyze infant mortality, it can be noted that the figures of more than 700 babies in 1994 has drastically reduced, but there is a drastic difference of 237 or 230 babies who died in 2012 and 2013, versus 185 and 172 in 2010 and 2011.

The problem of protecting children and their treatment abroad was actualized after the death of 9-year-old Tamara Dimovska from Veles, who had several times been refused to be treated abroad, with justification that a Macedonian center would be opened that would operate on children having problems with the spine.

The Fund’s decision to allow treatment of little Tamara in Turkey arrived after her death, which sparked a series of protests by citizens demanding resignations and responsibility of the directors of the Health Fund and medical commissions that decide upon children’s treatment.

Resignations were submitted by the then directors of the Fund, Maja Parnardzieva Zmejkova and Dzemaili Mehazi. After their resignations, for nearly two months, the government appointed four acting directors of this institution.

Little M. together with her mother went to the protest after the death of little Tamara Dimovska from Veles, where citizens showed a red card for the holders of positions in health institutions. Little M. will one day find out why her mother took her to the meeting where many children were out holding red cards with their mothers and fathers.

(The story was is supported within the NED project “Raising Awareness about Corruption through Investigative Reporting”)

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