Friday, 15 December 2017 | News today: 8

The battle for my prematurely born child’s life…

biljana-zafirova

Biljana Babik

Honor and responsibility, care and joy, tears and smiles and, most importantly, immense love. This is just part of what parenting brings. This is just part of what you experience when you get the role of mom or dad… Neither the sleepless nights, nor the tough days, nor the intense crying are strong enough to destroy that beautiful, indescribable feeling that is born with the birth of that “mouse” that becomes your love, your life, your everything…

I will give myself the right to give up space for my story. Some may find it pathetic, but it could be helpful to others… World Prematurity Day, November 17th is approaching. I am a mother of a baby born in the eighth month…

It was spring… A warm April day, like it was summer. Through the window of the hospital room I watched the sun shining, but it wasn’t bringing warmth. Cold and empty… So it looked like the room I was in. Helpless. Lonely. I hear a baby crying from afar… I know that it’s not my baby who was just born, but secretly I was hoping that this is my son, they are bringing him to me so I could see him, embrace him, tell him that he is my world… The baby cry was getting louder, approaching our room. My heart started to pound harder and harder… I knew that my hero is in that transparent box that gives him the warmth that I failed to give him in the last month of pregnancy. Why ?! No one can tell. No one can tell me if it really should have been so. But that’s the least important. What was important was the innocent creature lying alone, far from his mother’s embrace, far from the love that should be his leading force in those first days of life… A nurse came in with a baby, not mine, the new child of the woman with whom I shared the room. My tears came to my eyes. I rejoiced in the image that was before my eyes. But at the same time, I wondered when I would be in such a picture. When I will be able to touch the tender skin of the life I brought to this world… I felt a pang, pain, inside me, as if I was hearing the sound of my heart breaking. Crumbling as glass after a strong blow…

After a day, I got a chance to look into the box that meant life for my son. I was very tires, exhausted from the night that lasted all eternity, when I lay tied to bed, and all I could hear was baby crying, I reached the room where my baby was. My baby and many others… I passed the incubators, I could hear sounds from appliances, beeping that seemed like a warning that something bad was happening in one of the boxes…

The way to my child was long… Or it seemed like it to me. My heart stopped after each incubator I passed. Even the puppies when they are born are not as small as some of the little souls I saw there… Some instinct led me to the incubator that stood next to the glass window. It was him. It was my life, the piece of my heart that broke out the previous day. I had the feeling that I would collapse. It weighted as much as one bottle of water… Beside him there was an oxygen mask that kept him alive. I looked in the box without being able to touch him… The tears were rolling down my face, I could not control them… The next day they told me to go home… Alone… Everyone was with a leaving the hospital with baby in their hands, but mine were empty… I only felt the touch of my child’s skin . One of the doctors with medical gloves allowed me to touch him before i left… It remained on my hands, while my child remained in the box…

The battle has just begun…

A period of torture followed. I am at home, the child there. I knew that I did not have milk for him. But every day I went to breast pumping, knowing that after that they would allow me to see him. I was lucky to find doctors who are familiar with people close to my family, so I managed to see him through glass every day… Sometimes twice a day. Not that I could see him, but I was calmer if during the day I managed to stop in the corridor and look at the box that was located at the other end of the room. It was enough to see how he moved his little leg, raised his little hand… For me it was like the most powerful sedative. I will never forget the doctors who understood my pain and the pain of my husband… Especially one of them, who never pushed, did not stand out in words how much she did for my child, and she looked after my baby, she did that a lot. We were lucky both we and my hero. I remember once we went to see him, but we could not find the doctor. Another doctor came to us and asked us what we are waiting for… I told him – I want to know how is my son. He looked at me, brought me into the corridor and opened the file of my son… Perhaps for him it was routine, but for me it meant was a lot… a gesture to remember for which I am grateful to this day.

And phone calls stick in my mind. The annoying sound of the devices that were first heard when someone picked up the phone… it hurts, it hurts a lot. You tremble, say the name and the number, and you are all stressed out, you pray to hear that he is good, that he is breathing on his own… That day came… Your son no longer breathes through a mask… ... Then the day came when I heard that he was not in an incubator, that he was in a warm room… I had the chance then to see him, packed like a muffin. The next day I already got the most joyful call – come and take your child…

I expected that they would call me for “touch skin to skin”, just as things require. They did not call me, but it did not matter to me. At that moment, what was most important to me was that after two weeks that part of my heart that remained there in the transparent box would come home. My son comes where he belongs …

I was scared. I was afraid of how it would be at home. How will I deal with such a little baby who was barely 1800 grams. I was afraid that if I raised him, he would crumble in my hands. But from the doctor I got a smile and a comment that my baby is great…

Instead of ending that fear, the uncertainty, instead of getting rid of that tremble, the battle for my beloved child has just begun. On the doctor’s advice, I bought the milk she recommended to me, she wrote it on one of those advertising recipes, along with many more things that the baby needs … The child did not accept the milk. He vomited every meal. I looked for the doctor. She recommended that I change the milk because the child did not accept it, although she had previously convinced me that for two weeks in the hospital he was fed with that milk. Why, for God’s sake?!

After two days we returned to the hospital. The child was dehydrated due to the inadequate milk I gave him, not by my fault. And the temperature dropped … very low. I stayed for two weeks at the Clinic. Heart-to-heart, I was lucky with the doctors who made all the exams that should be made to a prematurely born child by protocol. Only eye and ear check up were yet to be done. All the results were fine. But every day I swallowed the unwanted comments of some of the nurses who asked if I had kept the child on a mountain and why I dressed him with clothes larger than him. At one point I turned to one of the nurses who said that it was normal for the child not to be warm, when I dressed him with clothes that are too large. I asked her where I could find a smaller wardrobe for a child of 1800 grams. Turning her face over, she said she was not here to advise where to buy clothes. After each bath at the clinic, the baby’s temperature dropped below 35 degrees although it was under the heater. However, the nurses’ comments did not stop … sometimes I knew how to get back to the same extent…

We returned home after temperature stabilized. After this we had a lot of stresses for both us and the baby. Two transfusions of blood, apnea … many returns to the Clinic … meeting with many doctors, but unfortunately, I would take the right to say a meeting with also doctors who have only diploma, but not knowledge. Or they have knowledge, but they simply are not interested in doing their job.

After “protocol” we went to the Development Counseling Center. The new stresses started here. The child has hypertension, uncontrolled movements, I have received questions such as whether during the brain check up the doctor had examined the child well … I returned four times to brain check up and with four great results, the Development Counselor still looked at the results with disapproval. There were unreasonable comments from doctors for their colleagues, vanities. They refused to look at the results of certain doctors with comments that they are not professional. We are suffering from vanities and even when it comes to human lives …

We went to an orthopedist with the child, in private, on recommendation, to, as they told me, the best doctor. The most expensive, but also the best, and then by other doctors, we got a lot of criticism as to why we followed the recommendations of the orthopaedic doctor who according to them did harm to my child. Later we found the best. A man with a lot of understanding. A man who has lived up to my story. He offered to help even where it does not depend on him. The best, but not the most expensive.

Finally, in conversation with the special educator from the Children’s Clinic, we decided to take the child to “Majcin Dom”. The physiotherapist gave us a term for exercises. Ten hours. That were the possibilities, and not the needs. The child needs more hours … I pay them privately. It’s not cheap, but for the sake of the child we are doing it. We combine as best as we can. We are fighting and looking for a way to provide the best for the child … It must be terrible for those who can not afford even two hours a month …

We took our child to Bulgaria. Check ups, training for home exercises … We returned with a virus from dirty toys in the exercise room. But, nevertheless, a good school and good experience from the center for children with delay in motor skills. Something that here in our country is just an abstract noun..

We also had a second opinion on the brain. From there we got an answer go home and rejoice at the child, work with him. This kid is good, he doesn’t belong here. The child has no diagnosis. In all that fear and panic, in all the comments from each and every one that there is this or that diagnosis, things are going well in the meantime. Sure, with all the problems that your pre-natal birth brings. Not that I would have loved the child less if we had different results. But quality life is priceless. That’s what I want to give him.

One month old baby in a hospital hall with dozens of pensioners

At the ear check up, after waiting in a corridor with dozens of pensioners, coughing, they told us that the child does not listen to low frequencies. In other words, that he doesn’t hear well.

Go home and see the child as the most normal, then return for a month … this was the comment of the doctor.

As the most normal …” – for God’s sake. Is that a normal comment? Through people I got to the doctor again … we needed connections to tell us that the baby was too little to be examined on the apparatus and that we should take it after he is 7 months … Then he was only 4 months. I never took it again there. Now he is a year and a half. My son hears!

At the eye check up we were lucky. There the doctor happened to know my husband. But do we need friends everywhere ?! Aren’t we equal before the laws and the Constitution ?! Do not we all deserve the same treatment ?! But still, the eye examination is its own story. The same problem as with the ear examination. Queues in the corridor, babies of 2 kg, adults, pensioners of 80 years. Everybody in the corridor is waiting for a check up. The pensioners belive that they have the advantage of being old, the employees are rushing to return to work, for us the parents the most important and most sacred thing is the baby, which we think should enter first … Imagine a picture of a narrow corridor filled with babies two months old, elderly people, pensioners – all one by one trying to reach the nurse asking her to give them an advantage … Shouldn’t there be a special day for check ups of these children . They are so fragile, without any immunity, fighters for life … Do they need this hurdle in their continuous struggle for survival …

Many viruses followed, many colds, many troubles … We had a lot of luck in the whole chaos. We made an excellent choice of a pediatrician who will take care of my fighter. Thanks to him, I managed to overcome the most difficult period. A doctor who knows about empathy, who has good approach and understanding … A doctor who knows how to comfort me, give me faith, act positively to us as parents. A doctor who game me optimism that everything would be fine. A doctor I could call at two o’clock in the morning when I was afraid that something bad was happening with my child, even if it was about a trivial thing. He never complained. A doctor that I trust . It’s primarily a man, a friend, and then a doctor. I will not mention his name. I know who he is, he knows who I’m talking about. His ethics, his morale, his professionalism are his best ad. He does not need my ad. I can only say: Doctor, friend, thank you for everything, both to you and your team. My family is your eternal debtor!

I thank the people around me, the doctors who were people, the physiotherapist. I thank him first of all to my husband who has fought for the best of our child, struggled with me in the moments when all this blow, stress and fear overcame me. At times I wanted to say I can no longer go on.. But this is not an experiment in life, this is parenthood, something that is not left in the middle. Something that will lead you through many labyrinths, in blind alleys, unexplained crossroads. I must always find the way out. I thank our parents who tried to help them, although they never understood that their persistence to help gave us more pressure. They think the best for our child, they love him immensely. I know that every step is for the child’s sake and that sometimes they are not even aware that we need a little space, we as parents, their grandson fighter as well. And of course, I thank my son who is a real hero!

Instead of patting on the shoulder, provide conditions

I did not tell my story to get some kind of pity or to do something for my hero. He grew up. I and my husband succeeded … But nowadays when I see all those Facebook posts on premature babies, I’m being attacked by a feeling of rage, a revolt … I learned on Facebook that there was an Association for premature births … How funny. They have a Facebook page and their own website, which is active only once a year – in the period when the World Prematurity Day is coming, November 17th. You will read what the incubator is, what is a pre-born child, you will see some debate on that day and that’s it. Dear friends, we the parents need support throughout the year, not just once a year. Premature children do not have a day, they have a year of struggle for life. What are the conditions in the country for premature babies ?! What are the parents going through, how much stress and anxieties are they going through?! Even though the children re small they feel that. Is it necessary for the mother’s patronage nurse to come home while the baby is fighting for life in an incubator and say that you have a very nice home, that we have given him a very interesting name and that Becutan handkerchiefs are the best because they are made in Macedonia. If a psychiatrist came home to talk to me, believe me, he would have helped me much more than the woman’s chamomile stories. You have a million questions of what happened, are you guilty, you blame yourself, your shed tears, you cannot control your emotions, and someone tells you how good it was for the room to smell like chamomile.

As I said, my child has grown up, but please, I ask from the Association that wakes up once a year, to enable the mothers to have someone to talk to. Let an expert come and give the mother the will to help her in the battle … Yes, we need a psychiatric conversation, not a conversation about chamomile tea.

Would not it be better to have a special center for these children ?! The number is not small. The needs for their care are great. Would not it be easier to activate yourself over the establishment of a special center where there would be a pediatrician and neonatologist, orthopedist, physiotherapist, defectologist, psychiatrist, psychologist … Do you think that the mention of the World Prematurity Day is sufficient support for these parents ?! What about mentioning the children who were born before the term ?! Will we comfort that my child is not the only one ?! That, at least, did not help me personally. Not even the photos that we will share on social networks to say how much our child grew will help me. I do not even get help with patting on the shoulder with a comment – hey you it’s not just you, here our neighbor’s child was born early, if you could see now he has grown into a man. Each child is different, each parent overcomes the period differently. I need support, I need an expert to talk, advice, support. I need better conditions for the child’s examinations. I need more terms for exercises …

I had the opportunity to talk to the president of that Association. I intended to do a story about this. Somehow things happened and I got distanced from that idea. Some comments have revolted me. Until when in this state we will come to the conclusion that the government has no ears, no matter which option is in power. I asked the head of the Association whether they asked for a longer maternity leave for the mothers of premature babies. The answer was, you know, in Serbia they have ears for that, but here they don’t. Yes, they may have no ears, but you can give me this comment after you take the initiative, as an Association you will fight for such cause. But you cannot tell me that they have no ears if you have not tried to do anything at all. In this case, dear friends of the Association, you do not have an ear about the needs of those you supposedly exist for. Mothers who have given birth prematurely need to longer time with their children. Here I ask you, until next November, take an action about it! They need a special day for eye, ear and all mandatory examinations that have to be performed to an early-born child. Not to be in a hospital hallway for hours, with people of all ages, waiting for their turn. And again, I ask you, instead of a tribune, to make a press conference next year, saying that you have ensured better conditions of these heroes … Tell us that we will get a special center for these children.

Let the mothers know that you exist. Offer them conversation, support, conditions. Let’s help the parents, not just pat their shoulder. My baby has already grown up, let’s do something for those who are about go along a difficult, painful and grueling path. I’m here, call if you think I can help you! I want to help those who will face my problem, because I know how stressful it is, how hard it is, how exhausting it is. And finally, the battle is worth it. The smiling faces of your loved ones prove it.