Fifteen years of invisible life: How did I “get” to the hunger strike? – Society

After 15 years of my husband and I’s struggle for offspring, at the age of 38, I became pregnant with triplets through IVF. However, a premature birth followed in the 6th month of pregnancy. Our three sons were urgently transported to the Children’s Hospital from the Novi Sad maternity hospital “Betanija”, after I saw them only for a moment. I was left alone.

Our family became five members for a short time. Two days later, I received news from my husband at the maternity hospital – our third son, Vanja, lived for two days.

The hospital psychologist turned to me with a big smile, saying she was sorry, but “not to worry, there are two more left.” She treated our children like kittens – if one dies, there will be enough left.

“Bethany” is still a place of trauma for me today. I remember the staff yelling during the preparation for the birth to “don’t fight because it doesn’t hurt that much”, being denied water for two or three hours after a c-section (when I had to walk three meters to the sink by myself) and being in a room with mothers who bring their babies to breastfeed, while you don’t know if your children will survive.

I never saw our deceased son Vanya because they convinced me that I should not look at a kilogram of meat after the autopsy. When we went to sign the cremation papers on the last day of the deadline, we were told that the body had already been cremated and that we had supposedly already signed the papers. I know nothing about our deceased son, except for the cause of death, which I only received after an official request to the hospital administration.

I locked his birth and death deep inside me. Even after 15 years, the time has not come to unlock it, because I don’t know if I could become human again after that. From that moment, probably subconsciously, I decided that I would do everything to influence the system to improve.

The fight for the survivors

I saw the two surviving babies, tiny and weighing only a kilogram, only ten days after their birth, when I was given the right to move into the mother’s rooms at the Children’s Hospital. Three months of combined days and nights followed, in a rhythm of every three hours.

Every three hours we went to intensive care, sat next to the incubator and tried to express the given amount of milk. For the twins, the pressure was two-fold. We lived in fear of stories that mothers who did not have enough milk had to leave the hospital. Medical reports were scanty, and my common sense saved me a job as a journalist during that period – between rounds of whipping, I wrote and proofread texts for our newspaper Bečejski mozaik on my laptop, while my husband, who came from home every day to visit, also managed to edit the newspaper that was then published as a weekly periodical.

When Philip got stronger and reached two kilograms, he was discharged from the hospital. The hospital rule dictated that the mother must leave the hospital with the child. So Ivan remained completely alone for another month, with short daily visits.

Ivan, along with the most severe bleeding on the brain, also got hydrocephalus. His head was growing rapidly, and the neurosurgeon refused to operate and install a shunt under the pretext that the cerebrospinal fluid was bloody, but periodically extracted the water by puncturing it with a needle. Seeing how each day of waiting was permanently damaging his brain, my husband and I reached out to a retired neurosurgeon at the Children’s Hospital through a friend. Despite the bloody cerebrospinal fluid, he successfully implanted a shunt that has been draining excess water from Ivan’s head for 15 years. Only later did we find out that our children were also suffering from sepsis and various infections in the hospital.

Growing up in Bečej: Parent – lawyer, doctor and fighter for human rights

When Ivan arrived home at three months old, our real everyday life began. Little did we know that he would be diagnosed with the most severe form of cerebral palsy. With doubts and diagnosis, we also faced social isolation – friends and relatives withdrew, as if disability were a contagious disease. The four of us remained alone.

Then the fight against the windmills begins. Instead of the support of the system, we got the advice from the doctor: “Nothing will come of him, he will never walk, put him in an institution and give birth to another healthy child.”

The state did not give us any advice or instructions. A parent of a child with a disability in Serbia is forced to be a lawyer, therapist, researcher, doctor, nurse, caregiver and fighter for human rights at the same time.

The quality of life of a child with a physical disability in Bečej is miles away from, for example, Norway. The local self-government provides the minimum, and with a hard struggle. Day care in Bečej is not adequate for Ivan, and that service is in question today. The service of a personal companion, despite the provisions of the municipal regulations, is only available at school and during the school year. More than 100 days a year (including 80 days of summer vacation) we are left to ourselves.

We had to do the daily exercises and most of the difficult surgeries (legs, spine) in private. Only one operation costs around 30,000 euros. We buy the aids ourselves, the stroller costs around 9,000 euros, the bathing stroller 1,800 euros, the car seat 4,000 euros. Since local critical media, like ours, are financially exhausted by the authorities and on the verge of survival, my husband and I cannot earn that money from our work. We provide all of the above exclusively from donations – when and if there are any.

Present: Hunger strike in front of Bečej municipality

The reason for the radical step was another example of the authorities’ arrogance. The Law on the Basics of the Education System mandates local governments to provide adapted transportation for children with disabilities from home to school. Since the municipality of Bečej did not do so, we submitted a request for retroactive payment of the transportation costs that we had borne ourselves. The municipality refused, and the president of the municipality signed the decision in both the first and second instance, which is illegal.

You can read the entire text of Kristina Demeter Filipčev on the website of the Becej mosaic, here LINK.