– If we had followed the doctors’ advice, we would have lost our daughter, says Ayad Kadir. He is Rosleen’s father. – For several months we have felt fear, pain and desperation. Seeing that our dear daughter has suffered has affected us psychologically, he says. The now nine-month-old girl received the BCG vaccine when she was six weeks old. Two months later, last September, she fell ill. Ayad Kadir with his daughter Rosleen at Ahus. Photo: Private – She had a fever, night sweats and cried constantly. Sleep was a challenge, says the father. The parents contacted the health center at Lørenskog, where the vaccine was given. They were told that such reactions can be normal after the vaccine. – But our daughter got worse and worse, so we went to the emergency room in Oslo. There they took a blood test. According to the parents, CRP was high, so they were referred to Akershus University Hospital (Ahus). The hospital carried out several tests, including a CRP test which showed 113. The family was assured that all the tests were normal, and they were sent home. At Ahus, Rosleen was admitted for 15 days, where several investigations and treatments were carried out. Photo: Private – The worst period in life The parents waited around ten days, but their daughter did not improve. – We strongly felt that there was something wrong with her. She cried and cried, without getting tired. The parents took her back to the emergency room, where a new blood test showed a high CRP. They were then referred once again to the hospital. There they took another blood test, where the CRP was 200. Rosleen was admitted to the hospital for around two weeks, where several investigations and tests were carried out. Among other things, a urine sample, a blood sample and a spinal cord sample were taken. She was also given antibiotics, Paracet and Ibux three times a day. – The frequent blood tests led to anemia in her, says the father. – That period was the worst time in our entire lives. Tears flow when we remember what our beloved daughter went through, says Rosleen’s mother, Fatima Zahra Elhilali. Got a lot of swelling After two weeks in hospital, Rosleen was discharged and showed signs of recovery. But the cause of the condition was not found. – We also got an agreement about follow-up at the hospital in a week’s time, where more tests were to be taken to follow up the situation. news has seen Rosleen’s journal. The doctor writes that an “underlying immunological/inflammatory process” is suspected. According to the doctor, the parents were clearly told to get in touch if their child again developed a fever, changes in the skin or mucous membranes and/or symptoms from the stomach or joints. A few days later, the parents discovered a swelling on Rosleen’s left arm, where the BCG vaccine was given a few months earlier. Despite the fact that the swelling was small, the family waited to take their daughter to the hospital since they already had an appointment there a few days later. At the appointment, the swelling was examined and a blood sample was taken. The blood test was found to be normal. The child developed a large swelling on her arm after she received the BCG vaccine. Photo: Privat The family says that the swelling began to gradually increase in size. – We contacted the hospital by phone where we were told that it was normal. The parents also waited a few days because they had an appointment at the health centre. – The doctor thought that the swelling was abnormal and advised us to go to the hospital. There we were again assured that the swelling was not dangerous, and everything looked normal after a blood test was taken. Traveled abroad According to the family, every time they went to or called the hospital, they were assured that the swelling was harmless and within the normal range. The father says that one day he lost control and called the hospital to threaten to complain. Photo: Private – Our daughter is struggling. She can hardly move her arm, the father told the hospital. The parents were told to come to the hospital. Blood samples were taken and the swelling was checked via ultrasound. – The doctors again believed that the swelling was only fluid, not dangerous and that it would go away by itself, but it would take a long time. The medical record states that a large abscess, a boil, was found, measuring 5×4 centimetres, and that it had increased in size in recent days. Two senior doctors recommended monitoring the development. They thought the abscess would eventually puncture itself. Rosleen was sent home, and the parents were told what signs to look for in order to contact the hospital again. The father says that a few days later the child developed a fever of 37.9, so he contacted the hospital. – Instead of being asked to come in straight away, which was previously agreed, the hospital began to discuss with me and tell me that it was not dangerous as long as the child was drinking and eating. – At this point we decided to travel abroad to save our daughter. We couldn’t trust what the doctors said, says the father. The next day, 23 December, the mother traveled with Rosleen to Morocco. Rosleen was immediately admitted to the Clinique Grand Atlas clinic for surgery right away, according to the parents. – The doctors there believed that the situation was so serious that waiting could threaten life or require amputation if the operation was not carried out, says the father. Medical certificate from Clinique Grand Atlas, translated from French to Norwegian: The medical certificate from the hospital in Morocco states that Rosleen had a fever, swelling on her arm of 7×7 centimeters and painful, enlarged lymph nodes at the injection site. She underwent emergency surgery. She tested positive for tuberculosis and was put on treatment for the disease. According to the parents, the daughter contracted tuberculosis and started anti-tuberculosis treatment. The father says that he called Ahus before his wife and child returned to Norway, to check if they had the medicine prescribed by the doctors in Morocco. Ahus confirmed to the father that they had the medicine, and that Rosleen could have it when they returned – When we returned, around two weeks later, the medicine was delivered from Ahus to us via taxi. The child has been diagnosed with tuberculosis and has started medical treatment for the condition. Photo: Privat Will not comment on the case news has been in contact with Ahus several times, but they do not want to comment on the case, even though they have been exempted from confidentiality by Rosleen’s parents. See the questions news has asked Ahus at the bottom of the case. Kirsten Haugland, director of the children’s and youth clinic at Ahus, says that they do not want to “enter into a public dialogue about the specific patient history”. – Exemption from the duty of confidentiality does not exempt us from assessing and deciding what we think is right to share and comment on the treatment of individual patients in public, writes Haugland in an e-mail. – Through our dialogue with the family, we are familiar with what they have to say. In our work to provide the best possible patient care, we value feedback, and review this thoroughly internally. – We also always draw attention to the possibility of sending a formal complaint to the State Administrator or the National Health Inspectorate. It also applies to this family, she writes. The parents have now complained about the matter to the State Administrator. They claim that their daughter did not receive proper health care, and that the doctors lack experience and knowledge. Vaccine can lead to boils Gunnveig Grødeland, vaccine researcher and immunologist at UiO. Photo: Kristin Ellefsen / UiO Gunnveig Grødeland, vaccine researcher and immunologist at UiO, says that it is known that BCG vaccination can cause larger sores in rare cases. – The vaccine contains live and weakened tuberculosis bacteria, so that is why this vaccine could cause greater skin reactions. According to Grødeland, there is not much tuberculosis in Norway. – So the BCG vaccine is now only recommended for children who have one or two parents from a country with a high incidence of tuberculosis. – A lot of research is being done to develop better vaccines against tuberculosis, but these are not yet available, she says. Grødeland has seen the photos of Rosleen’s arm and says that she cannot comment on the treatment of the skin damage, as this is outside her area of expertise. Einar Sagberg, infection control supervisor in Drammen municipality. Photo: Azad Razaei / news Einar Sagberg, infection control supervisor in Drammen municipality, says that abscesses after BCG vaccination are a known but rare side effect. He says that the infection control office in Drammen does not initially have much of this type of vaccine. – We primarily set this when there is a need for it in connection with travel or in a professional context, says Sagberg. – Still scared every day – We want to know what happened to our daughter and why she didn’t get the right help. We also hope that this incident can help the hospital learn from its mistakes, so that similar situations are avoided in the future, says Ayad Kadir. – How is your child doing now? – She is feeling better now, but is almost always in a bad mood. She wakes up all the time at night and cries, which she didn’t do before. My wife carries her almost around the clock, says her father Ayad. – Our life has really been affected after our daughter became ill. We are still afraid every single day that something will happen to her. These are among the questions news has asked Ahus: You have been exempted from the duty of confidentiality by the girl’s parents. Why do you still not want to answer our questions? Did you find the reason why the child was sick? The parents say that they discovered the swelling a few days after they returned home from the hospital where the child had been admitted. When they contacted you on the phone, you said the swelling was normal. How could you come to this conclusion without seeing the swelling? Why was an operation not performed when the swelling increased and the child did not improve? What were the deciding factors behind this decision? Has a surgeon examined/assessed the swelling? Could the swelling have been avoided? The parents feel that they were not taken seriously by you. What is your comment on that? Do you think that the girl has received proper health care? What do you think about the treatment/surgery and the diagnosis the child received in Morocco? Could you have done anything differently in this case?
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Rosleen Kadir Ayad had severe side effects after the BCG vaccine – news Buskerud – Local news, TV and radio
