Marysia is a pretty girl. Her round face is framed by long, dark hair. Attentive, dark eyes peek out from under the slanting fringe. Feminine silhouette.
“Maybe if she looked sick and emaciated.” For the helpless and unhappy people, it would be easier for people to understand that she is living under a sentence. That the genetic disease she was born with destroys her young body, condemns her to suffering, and drastically reduces the quality of her life. Sometimes someone will bite her. He says: stop coughing, go to the doctor. Do something about it. And she has been doing “something with it” from the very first day of her life. He fights and tries to function normally. He has cystic fibrosis. And what exactly is it, friends ask.
Marysia was born on a frosty January evening in 1996. Mom, Basia, had a caesarean section. Even though she was under total anesthesia, she heard them pull the baby out of her belly. How they measure and weigh them. He remembers every word of the doctor.
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– I do not have good memories of this event. A few hours after giving birth, I woke up in the general room. I had a high fever. They brought me a baby girl. Such a tiny, thin and long. She flourished because it was hard to even call it crying. She got 9 points on the Apgar scale.
But even then, the newly-minted mother felt uneasy. The child was very calm. He couldn’t cry out loud. It was falling asleep next to its breast, it was sucking hard. The midwife encouraged mother not to give up, mother’s milk is best for the baby. It will take a few days, she reassured. Meanwhile, the first serious health crisis in Marysia occurred in the third day of her life. Bilateral pneumonia. The girl was detained in hospital for two weeks. The antibiotic was administered intravenously. Mom was with the baby all the time. She was breastfeeding and nursing.
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– Then there were also symptoms that there was something more serious with Marysia. The little daughter was not gaining weight, she was so calm, calm, as if she was always weakened. The doctor took it on account of the sick lungs, but my anxiety continued. The doctor reassured that the child would recover. Breastfeed and watch, and it felt like something more dangerous. But who cared about the impressions of the upset mother? We were in the hospital, cared for, a child undergoing treatment. What I mean?
After returning home, Marysia did not gain weight, despite being put on her breast frequently. She was tired of loose stools. On the one hand, she was weakened, on the other, she was still crying. During the checkups at the doctor Basia heard over and over again that it would pass, it was colic, please do not give up, feed, watch. Despite this, the little girl had a blood transfusion twice in the first four months of her life. Why? Nobody explained this to Basia in detail.
Finally, another doctor admits honestly – I can’t help. He directs the mother and the child to the children’s hospital in Kraków, Prokocim. Basia hears in the morning: «How could you neglect your child so much? It is malnourished! » Basia is devastated. What are they suggesting to her? That he was hurting his own daughter ?!
– It was a horror movie. Marysia was already four months old and she looked worse and worse. A red rash appeared on the skin. Pneumonia had stuck again. A doctor from Prokocim recommended to feed her daughter Humana MCT. Marysia began to gain weight after her. She had put on weight, but it looked more like a swelling. It seems to have improved, and I still thought that the doctors were walking in place. That no one can help her. This helplessness was killing me.
Basia’s accidental meeting with her friend after medicine gives little Marysia an unexpected turn. Basia confides in her old friend about her child’s health problems. Then he hears the mysterious words “Test the baby for cystic fibrosis”. Pneumonia, digestive problems, loose stools, bloated belly, weakness. The symptoms match.
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– It was a good lead. The research confirmed that my child was born with a genetic defect that burdened him with a disease for his whole life with a completely foreign name “cystic fibrosis”. I’ve never heard of this disease before. I learned almost everything about her over the next few weeks. Including that a child with cystic fibrosis may not live to adulthood. That the course of treatment, rehabilitation, continued in a relative form or, on the other hand, in the severity of symptoms, turn the life of the whole family on its head. The patient must be under constant and comprehensive medical care. He must learn to live with the burden of daily inhalation, rehabilitation, exercise, the obligation to take medications, observe his own body, he must learn to react in difficult situations: with bouts of troublesome coughing, weakness, hemoptysis, digestive system inconvenience. And he cannot let go, even for one day.
Basia always told her daughter that she was healthy, only she had cystic fibrosis in stock from mother nature, with which she would live in a relative symbiosis for many years, if she would spring back and mobilize herself.
– I kept telling her so that she would not be afraid of life. She took handfuls of it as much as possible. Marysia was lively and joyful from an early age. After getting the correct diagnosis, I spent two years with her in hospital wards. She and I had already been hit in the head. During one stay I said enough, I am releasing the child on my own request. There is also a small revolution at home. We sold an apartment in the city and built ourselves in the countryside, because we noticed that the rural air had a beneficial effect on Marysia. Even the fact that she had to go uphill to school improved her condition. Yes, there were more difficult months, I had to fight for my daughter for an individual course of study, but for 10 years I managed to save her from the harsh reality of hospitals. Marysia had a normal childhood.
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Sometimes its consequences turn out to be more difficult than the struggle with the disease – low mood, depression, lack of support from the health care system and the relatives themselves, social ostracism.
– The health care system for people with cystic fibrosis (and we currently have about 2,5 of them in Poland) leaves much to be desired. There is no comprehensive support, often common understanding on the part of the health service and – most of all – a sense of security and regulations that would provide the patient with appropriate care in the event of an emergency, believes Basia.
She remembers last year when her daughter had an exacerbation of symptoms. Marysia started spitting blood for the first time in her life. Basia was terrified. It was pointless to call an ambulance, take the child to the emergency room, and leave him in the line until he consulted a doctor. Basia called hospitals, ENT and pulmonary departments with a request to admit her daughter suffering from cystic fibrosis. She heard that the institutions cannot help – they are not prepared for such cases.
– It is humiliating when the doctor spreads his hands helplessly towards his sick daughter and the portfolio which is swollen from the description of the course of the disease. When he orders ad hoc, accidental, routine, and sometimes also erroneous actions to perform a medical service. The situation is extremely depressing when it comes to sick adults. The system is not prepared for patients with cystic fibrosis over 18 years of age. There are two hospitals in Poland (in Warsaw and Poznań) that have experience and relative conditions for the treatment and management of sick adults, but only a dozen or so beds! Is it not possible to create a system that would support their long-term treatment closer to their place of residence? Which would make sense, and not rely on spychology and generating unnecessary costs?
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Basia gets angry. – The life of our daughter and our family is full of unnecessary absurdities. Each time I applied for an individual course of study for Marysia, I had to submit a special application to the psychological and pedagogical counseling center. One time I got a letter asking for the dates on which my daughter would be sick!
Another time, a teacher at a new school, who did not have time to read a file of leaflets about her daughter’s illness that Basia had brought to the staff room, asked her during the lesson if you could stop coughing? Please tell me how should your daughter feel in such situations? Should he stand up and lecture that a sudden, tiring, and unmanageable cough is caused by a serious illness that he has been struggling with since birth? Or would it be better if the teacher would like to consult a leaflet? Everything is written there, including the fact that the patient can be asked to leave the room, to calmly cough up, use an inhaler and calm down. You can get along with it all, you just have to want it.
Basia has been helping people suffering from cystic fibrosis and their families “Matio” in Krakow for many years. He laughs that he and Marysia have already cut their teeth on this topic.
– It’s better. When Marysia was born, knowledge about cystic fibrosis was in her infancy, and also difficult to access. Doctors felt in the dark. Dread to think how many people have struggled with the symptoms of the disease without a proper diagnosis, the right course of treatment.
Cystic fibrosis cases are now diagnosed much faster, although malpractice does occur now. In addition, the rehabilitation of a child is a serious challenge for the family. It requires a lot of discipline, the costs of treatment are high, the child must constantly take appropriate drugs, preparations and various nutrients to support the internal secretion systems. A child needs a specialized diet, a balanced dose of exercise and exercise, and a healthy environment in the open air. Although visually it looks healthy and full of life, you need to be aware that you will be struggling with a severe and incurable disease until the end of your days.