NASTENKA USED TO BE A HEALTHY AND CHEERFUL GIRL.

She had never fallen ill. Had always been a very lively and merry girl. The disaster came suddenly, like a bolt from the blue. A terrible diagnosis was announced: acute lymphoblastic leukemia FAB-L1,common, CNS – first acute period (C91.0 according to the ICD-X).

 Of all leukemias and its subtypes, this is the best curable. In other words, children with such diagnosis are cured with the highest chance for complete remission and may live to be a hundred, provided they get the right care, treatment and support.

 Where to run??? Where to get treatment??? OKHMATDET!!! Yes, OKHMATDET is the best clinic in Ukraine. She must be treated there. This is what we, unfortunately, thought and this was our fatal mistake. The mistake that twice nearly cost us our child’s life.

 We were admitted on June 15, 2007, it was Friday and the weekend ahead. There was nobody around and nothing available. The department was like a public thoroughfare: open to anyone who likes to enter. The parquet floor in the ward all rotten and covered with mould. Ragged and filthy walls. Plaster falling off the fungi-covered stained ceiling. I did not realize anything at that time.

 Later, after I had studied a great deal of information on this disease, going into nuances of treatment and supporting therapy, I realized that for a child with cancer such conditions mean the death sentence.

 First examinations started on Monday and on Tuesday Nastenka received the first pill. On 26 June the question of central catheter was raised. A surgeon, head of the department of resuscitation and intensive care of Okhmatdet’s surgery centre, Vadym S. Govorov came. Nastenka was anesthetized and the catheterized.

 After the catheter was inserted, Nastenka was immediately transferred to the ward WHILE STILL ASLEEP. After this operation the child must remain under close medical supervision. It was an absolute must for the doctor to wait until she regains consciousness after narcosis and make sure the catheter had been inserted correctly. But why should he??? Govorov must be a self-confident surgeon, as he left Nastenka to her fate.

 Tanya was with Nastenka and noticed that the girl suddenly turned white and started opening her mouth as if she was desperately trying to breath in. Tanya went out in the corridor and said to the first doctor she met that there was something wrong with Nastenka. The doctor came in, felt her pulse and rushed out to get other doctors.

She found an anesthetist and came back with him. The anesthetist looked at Nastenka for a while and then started pinching her cheeks and call her. Nastenka could only react to pain.

The doctor Irina Vasiliyevna told the anesthetist to pick up the child and carry to the manipulation room, but he was standing transfixed and looking at Nastenka; then our ward-mate Kristina picked up Nastenka and ran into the manipulation room.

Doctors started running around and fussing, even Govorov came back. When Govorov came out of the manipulation room and met Tanya’s eyes, he shrugged his shoulders, lowered his head and hurried away.

And, what was the most terrible, in the manipulation room, which is by the way considered a surgical ward, there were no medications, no syringes, nothing at all; people kept running around in search of anything necessary. Nobody would tell Tanya what had happened with Nastenka. Finally the child was taken to the department of resuscitation and intensive care.

As I found out later, when inserting the catheter, Govorov did not find the central vein. He pierced her artery and pulmonary pleura. About 700 ml of blood got into the lung’s pleural cavity. When asked by officials about this, Govorov said:

- I am a young specialist, with little experience with central catheters, but there is no one to handle them, so I do.

The question is why they catheterized the central vein at all? There was no prerequisite to catheterize the central vein; Nastenka has good veins and it was possible to use peripherals. In good clinics, especially foreign ones, central catheters are only used in emergency cases.

Some words about the central catheterization. In good clinics, central vein is catheterized only in case of high-dose chemotherapy or if there are no visible veins, which does not allow using a peripheral catheter. The risk of central catheter has to be reasoned and justified. In OKHMATDET they use central catheters on everyone, from the day of admission. Why? I think, just to make the personnel’s life easier. Peripheral catheter must be changed every five days, seven at the most, if there is no inflammation. It requires more attention: to examine it from time to time, to wash and change when necessary, while central catheter is inserted and left for 3-4 months or even more, and mothers will look after it themselves. The personnel is happy that there is no fuss with a child.

 As they failed to insert central catheter in a normal way, it was inserted in an arm, by way of venesection. An incision in the arm was made. I spoke to surgeons about the suture on the arm that was left after the incision. There were shocked. They said “One can made appendectomy through such incision. To insert a catheter, a much smaller incision is enough, there is no need to cut so much to pull out a vessel. This is just one more example of how patients are treated in OKHMATDET.

 Who made this incision? Probably once again, a young and inexperienced doctor or just a very self-confident one? And another thing. Who put in the stitches? Was he young and inexperienced, too? Or simply drunk? Look at those stitches.

Why such ‘professionals’ are allowed to practice, especially to work with children??? Are our children guinea pigs? Material for practicing and learning? The stitches left on the ribs after pulmonary drainage are no better. They look as much terrible.

We were not allowed to see Nastenka at the resuscitation department, because of “high sterility standards”. Below I will write about sterility and hygiene of the department. At the resuscitation department Nastenka was not looked after at all, she still has enormous wounds and bedsores on her head, made by knots and bandages. The child was lying on bandages for a week and no one bothered to pay attention, move the child and change bandages so that she did not lie on the knots.

 Look yourself. The picture was taken on 7 October 2007 or 102 days ago. And here are the bedsores after 102 day.

You can imagine what was the child’s head like when she was transferred from the resuscitation department. If you look more closely, you can see stripes at the top of the head; those were left by the bedsores.

 Doctors must have ignored that after a week Nastenka could not even sit, could not breath normally, that she was afraid to turn on the side where the drainage had been inserted. Only a month later Nastenka managed to lie on that side for the first time and told her mum happily: “Look, Mum, I am lying on the sore side”.

 So, Nastenka finally overcame this situation. When she regained consciousness, treatment of her leukemia continued. I several times requested her case history. I wanted to know what medications my daughter was receiving. I wanted to get advise from other doctors. They always refused in a rude form to give me her case history.

 Now I will tell you about the treatment in OKHMATDET’s hematology department. There is no possibility to weigh the child. The reason is trivial: there are no scales in the department. Children keep losing weight under chemotherapy, and I think it is necessary to check a child’s weight when calculating a dose for chemotherapy. But when I asked S.B. Donskaya about it, she said such calculations are based on the height. Maybe I got it wrong, but how can those calculations be correct, if a child weighs 20 kg today, and 15 kg in a week? Still, he or she receives the dose based on 20 kg.

 As far as I know, dose of any medication is always calculated on the weight basis. It is necessary to regularly check the condition of a child under chemotherapy. To take his/her blood pressure, measure the heart rate and oxygenation of blood.

 In OKHMATDET there was nothing to take the blood pressure with. A nurse would come sometimes, bring an electronic hand tonometer and complain that the device keeps displaying different figures. After about five attempts to take the pressure, she would get five different results, sigh and leave.

 As for the electronic hand tonometers, there are not meant for children, according to manufacturers’ instructions. And even when used on adults, they may be quite inaccurate, which is also mentioned by manufacturers. Nastenka was treated in OKHMATDET without blood pressure checks. There is no such notion as doctor’s round there.

 No one ever asks about the child’s condition, until her mother goes and asks questions herself. Treatment goes without any supervision of the personnel. Without any examinations by other specialists; everything is done by guess-work. Although the treatment of onco-hematologic diseases requires strict control and regular examination of many organs, regular analyses of blood, urine and feces.

 Over the whole period of treatment at the hematology department, they never took Nastenka’s urine of feces for analysis. “Urine tests” were like this:

- URINE IS NOT RED? ALL RIGHT THEN.

That is, until you start peeing with blood, no one will bother to do anything.

 Chemotherapy was performed in an outdated grandfather’s way. Ordinary droppers were used, without infusion pumps. I had already decided to find an infusion pump for Nastenka, when accidentally learned that OKHMATDET had received a batch of new infusion pumps, but the personnel was not trained to use them.

 They tried to use an infusion pump on Nastenka, but after an hour they still could not understand anything and took it away. They reverted to using ordinary droppers. As a result of infusions, Nastenka suffered from terrible vomiting. She threw up all the time and had such spasms that an adult could hardly bear. None of the so-called doctors prescribed any antiemetic drugs, although Tatiana kept telling them that Nastenka felt very bad, that she kept throwing up and could not eat. They just disregarded her.

 Just at the very end, when it was not necessary, our attending doctor, Oksana B. Tatarina, assented to say: “Well, you may try Osetron”. As if she did us a favour.

 To ask doctors about the child’s condition or any prescribed medications was unreal. Usual answers were like this:

 - Why are you bothering us??? We know how to treat, you are not supposed to know anything, you do not understand it anyway.

As if all parents are idiots and are not supposed to be informed.

- Is she not well??? Try this or that, maybe it helps. It does not help? Try another one.

- Are you taking such-and-such medication? You are not??? Why aren’t you?

Because no one told us to take it!!!

 Or “are you taking this medication???” looking surprised… - “they have cancelled it for you ages ago, you must not take it”

 They had just forgotten to tell her mum about it. There is no such procedure as scheduled distribution of drugs and prescriptions. All is done by word of mouth. Buy this or that and try to take it, maybe it helps…

Mothers have to load medications in droppers by themselves, have to give various pills to their children: the personnel is too busy for that. But in fact, it is strictly prohibited!!! But if a mother does not change medication herself, this can lead to trouble.

When a medication in the dropper is over, there is no one around to help, you should look for someone yourself. Now they are eating, then they are doing something else. “Nothing will become of your child, let her wait” etc. Total negligence, total chaos.

Chemotherapeutic medications are given not on the schedule, but when it is convenient for the nurses. If a medication is due at 2 a.m., a nurse can put it in the dropper at about 9 p.m., to have a good night’s rest. In the meantime, concentration of chemotherapeutic agent in the blood stream accrues, as the interval between infusions is less than required.

This causes various complications and deteriorations of the child’s health. Several times they brought medications past expiry date and tried to load them into the dropper. Thanks God Tanya noticed that. What else they could have infused, we will never know.

Medications were brought opened and not signed. Impossible to find out what kind of medication it was. Always impossible to find anyone. At 3-4 p.m. they all mysteriously disappeared. One doctor on duty on the whole floor, and sometimes not even a hematologist.

Parents are treated absolutely like trash there, they are afraid – God forbid! – to hurt the doctor or nurse with an incorrect question, as he would not come to see their child any more. Nataliya A. Kubalia, head of department, behaves as if everyone owes to her at least 100 thousand dollars, looks at everyone like an empress looks at her slaves. It is impossible to talk to her about the child. I do not exaggerate, this is exactly how she looks and treats her patients.

Some time ago, Tatiana often asked the doctors to look what was happening with Nastenka. Why the child slept with her eyes open, why her nails were so white and hands were red and ice-cold. They disregarded her and said there was nothing wrong, but then…

2 August 2007

In the afternoon Nastenka suddenly got unwell. She turned all blue, threw herself on mum’s neck, hugged her tightly and whispered “Mummy, save me”.

Tania dashed to get the doctors, but as usual, there were no one there. When they came back, Nastenka was not breathing already. Thanks God, in the ward next door there was a woman Natasha with her child, just a patient, like we were. She was an resuscitator by profession and rushed in, as she heard Tania screaming.

The doctor Larisa Anatoliyevna rushed in, too. Nastenka was brought to the same unfortunate manipulation ward (surgery room), where there was nothing, but a bed and a cupboard. They had to look for adrenalin and other necessary medications throughout the whole department.

Six times Nastenka’s heart stopped beating. Six times they managed to make it beat again. The resuscitation lasted for one hour and ten minutes. I do not know how it was possible to save the child in such conditions. It must have been a miracle. Then Nastenka was transferred to the department of resuscitation and intensive care.

At the resuscitation department there is a doctor on duty Ivanna O. Borysko. She visited this website from the first days and, of course, read a story about the catheter. She grew to hate me. When Borysko saw me, she looked absolutely happy, her eyes were shining. She took me to Nastenka to say goodbye. She said Nastenka had had a brainstem hemorrhage, that it was the death sentence and she was not going to survive.

With enthusiasm she started telling me about everything and showing how everything worked. She removed wet bandages from Nastenka’s eyes, so that I could see the open lackluster eyes of my child, and looked at me with delight, watching my reaction.

You cannot imagine what I had to come through. I prayed her to do everything possible, but she answered that nothing could be done and all I could do was wait. She practically pronounced the death sentence, and a place in the morgue was being prepared. No one was going to take any measures. No matter how terrible I was feeling, I did not accept this diagnosis and did not agree to wait. I wanted to use the slightest chance.

I managed to find Andrey Alekseyevich, a neurosurgeon from the institute of children’s neurosurgery. Andrey Alekseyevich entered the department, and after a couple of minutes everyone started running around, took Nastenka to perform computed tomography, and it turned out she had had no hemorrhage.

A question suggests itself: Why no measures were taken until an expert from another institution arrived? Why did they start to perform necessary work only after the arrival of outside expert? There are a lot of different “whys” here.

Nevertheless, Andrey Alekseyevich gave hope to us and chances to Nastenka. From that time he continued to supervise her. The next day I aimed at finding the best neurologist. By all possible and impossible means, I managed to get home and mobile phone numbers of the Chief children’s neurologist of Ukraine, professor Vladimir Yuriyevich Martyniuk.

Vladimir Yuriyevich did not deny my request and arrived immediately. He examined Nastenka, made all the necessary prescriptions, and consulted the doctors.

Vladimir Yuriyevich told us that he could not promise much, the condition was extremely grave, a deep coma, but still there was hope and chance that everything would be all right. No one could say in what state Nastenka would recover from coma, but we had to struggle. Only the fact that I managed to engage top experts actually helped to save Nastenka.

Vladimir Yuriyevich kept supervising Nastenka until it became clear that she fully returned to us. She spent two weeks in the resuscitation department under artificial life support.

As we found out later, in OKHMATDET Nastenka became infected with the blue pus bacillus. We do not know, whether it happened in the resuscitation of hematology department. We only know that this infection exists in both departments. No antibiotic or other medication can fully eliminate the blue pus bacillus. And for children with onco-diseases, the blue pus bacillus is especially dangerous and may lead to death.

How can we speak about hygiene in the resuscitation department, where they claim no trespassers are allowed, when I personally saw the acting director of OKHMATDET (the director was on holiday) took foreign tourists to the department. I do not know if they were sponsors or just students, but whoever they were, they came from outdoors in their street clothes and started strolling around, dropping in wards, talking and pointing fingers here and there. I was standing near the opened department’s doors and was ready to physically fight anyone who would enter Nastenka’s ward. No one did. I do not know who was more lucky, they or myself.

If the deputy director does not follow elementary sanitary code, such as giving out hospital gowns and shoe covers, can we talk about hygiene and sanitary conditions at all? Can we talk about any sterility in the department of resuscitation and intensive care?

While Nastenka was in the resuscitation department, I realized that she must not be left in OKHMATDET. They would kill her. Apart from OKHMATDET, there were only two options: Radiological Centre and Kyiv Oblast Oncological Dispensary. The Radiological Centre flatly refused to accept Nastenka. The Oblast Dispensary agreed.

 Nastenka was discharged from the resuscitation department as soon as she started breathing by herself. Her condition was extremely grave. She was admitted to the Oblast hospital in the state of first-degree coma.

Nataliya A. Kubalia, head of the OKHMATDET’s hematology department, even in this situation did not take the trouble to make a case record, with all the prescriptions and doses of medications, including those prescribed by the professor V.Yu. Martyniuk, that were compulsory for Nastenka. She gave me a paper with nearly nothing on it.

For 24 hours, the child was not receiving the necessary medications. Next morning I went to OKHMATDET. I came to the head of the department and requested the real case record, as it should be. She started yelling at me that I should not have come and that she would only speak to the doctor.

I do not know how I managed to control myself… Probably, due to the thought that Nastenka still needed me. After we had exchanged some words, the head of the department told me that I did not realized with whom I was mixing up. She must have been totally aware of her impunity, if she could make statements like this.

 Our former attending doctor, Oksana B. Tatarina, was quietly sitting on the couch and giggling: she found it very funny that the father of the child they had nearly killed dares to ask for something and claim her majesty’s attention… Here is the case record that I got initially

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This case record was made the day after the scandal:

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But this record is still too far from the ideal. Actually, it gives you an idea of what has happened. In my opinion, all this has happened through the fault of the doctors and medical personnel. Through the doctors’ negligence of their duties, through the nurses’ lack of experience.

There could have been overdoses of chemotherapy, incorrect dilution of chemotherapeutic agents, particularly L-Asparaginase. There could have been mistakes and infusions of medications prescribed to a different child. There could have been many things, but, unfortunately I cannot prove anything. The case history has been rewritten many times, to make the doctors safe.

I hope that this story of our treatment in OKHMATDET speaks for itsel.

14 August 2007

We were transferred to the Oncological Dispensary (KOOD) of Kyiv region.

It was terrible and I cannot find words to describe our state. When Nastenka was being transported in the ambulance car, we were beside her. To see her unconscious and to realize that it can be forever was just unbearable. To see twitches of her body, unnatural head movements, unseeing eyes without any signs of consciousness… I still do not understand how we could bear and survive all this.

Even the ambulance car driver, who helped to roll the barrow, had tears on his face. How we survived the following two days beside Nastenka, I do not understand, either. To realize that the prognosis was too pessimistic and that Nastenka might never return to normal life was just unbearable. But due to prayers of thousands of people, due to efforts of KOOD’s doctors and personnel a MIRACLE OCCURRED.

The miracle, in which no one had believed, except for us, the parents, and people who had prayed for Nastenka. Nastenka came back without any losses in consciousness and disorders in the central nervous system.

At the time of admission in KOOD the diagnosis was:

POST-HYPOXIC ENCEPHALOPATHY

CASE RECORD UPON ADMISSION TO ‘KOOD’

Those pictures show in what condition the child was admitted.

As soon as Nastenka was transferred from the resuscitation department to KOOD, they first of all removed the central catheter from her arm. PUS WAS RUNNING FROM THE CATHETER!

In OKHMATDET’s resuscitation department they even did not look after the catheter. How can this be true? They are supposed to save lives there, and meanwhile a patient can die from sepsis? I cannot find words to describe my shock! How can this happen in the best clinic of Ukraine?

And how can this happen at all, whenever it could be?

21 August. Nastenka had her nasogastric tube removed.

It turned out that the end of the tube was tied in a knot in her stomach, which caused injury of the mucous coat, nosebleed and pain shock to the child. A knot is acceptable if there are problems with inserting the tube, but this must be noted down and handed over with the child. To take out a smooth tube, quickly and painlessly, is one thing; and absolutely different is taking out a knot, it should be pulled slowly and carefully.

Of course, as the doctor was not aware, he tried to remove the probe as quickly as possible, to avoid vomiting spasms and unpleasant sensations.

Another painful injury  for the child, which could have been avoided, if OKHMATDET’s doctors fulfilled their duties properly.

If the doctor who had inserted the probe, did it on his child, he would have probably put a sign on his/her forehead: CAREFUL! A KNOT!!!

3 September 2007

I visited OKHMATDET. Collected copies of the results of initial analysis of cerebrospinal fluid. Talked to the head of the department of hematology and TKM, Svetlana B. Donskaya. She is the main children’s hematologist in Ukraine, an associate professor…

Svetlana Borisovna does not care at all what has happened and is happening now. She only cares about her own image and reputation. She told me that what I write on this website discredits her department and naturally herself. That she would do her best to accuse me of slander.

You know, I am not afraid of accusations. I am afraid of quite different things. I am terrified that the main children’s hematologist in Ukraine, associate professor and whatever other regalia she has allows everything that happens in OKHMATDET’s hematology department, and, moreover, does not make the slightest effort to provide normal conditions and human attitude to little patients, and only worries about her reputation and image. Believe me, everything on this website is not an exaggeration, on the contrary, some aspects are put more mildly and not all wrong actions are described.

I do not have enough time to describe every little detail. This would make a book, not an article. At the moment I am describing only what I have seen personally and what we have come through. But I know an awful lot of terrible things that they do with children and their parents.

Parents do not file official complaints as they are afraid of the doctors. But they readily share their problems with other parents. First of all they are afraid for their children, that complaints may incline the medical personnel against them. But this fear itself is the source of such attitude to patients.

nfortunately no one wants to understand this and the fear for their children represses common sense. Doctors are aware of their full impunity and know perfectly well that it is impossible to sue them.

If you are facing this problem, but are afraid to act officially, you can tell your story on our forum absolutely ANONYMOUSLY.

I will also publish your story on this website.

The world must know what is happening in our medical care system!!