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My son was supposed to be a “plant” at best. The doctors just wrote him off. After two years, an accidental and very late diagnosis – quadriplegic cerebral palsy – started a struggle for independence that has been going on for 12 years. Unfortunately, all efforts were thwarted by surgery which, instead of improving it, brought pain and complications. I dream that Dawid could stand alone and move around without a wheelchair. I believe it will be a success. I’m not giving up – says the boy’s mother, Mrs. Wiktoria. Get to know its history.
- David has four-limb cerebral palsy. Parents found out about it only when the boy was two years old, and it was by accident
- Due to a dislocated hip joint and subsequent operations that brought complications, David’s rehabilitation is impossible. It means pain, the loss of already acquired skills, no chance of becoming independent
- In Poland, Wiktoria heard that nothing could be done. After one operation, Dawid has to undergo further treatments
- You can read more of these stories on the TvoiLokony home page
Monika Mikołajska listened to it
Difficult childbirth. Two years later – a surprising diagnosis
When David was born, no one gave him a chance. I gave birth to him on the 27th week. I was expecting an early delivery, but my son’s illness was a surprise to me. Actually, until the sixth month, my pregnancy was developing properly, but then my water started to break out, and I was hospitalized. Nobody knew how it would all end, including the doctors. They gave me no guarantees, rather they had an approach like: I’m young, I will still have children. So I was prepared for complications, but I did not see that it was so.
I gave birth to a son naturally. The delivery was very long, the baby was born all blue. Dawid had the highest – fourth degree of intraventricular haemorrhage (intraventricular stroke is often a consequence of premature birth – ed.), He was hypoxic, he had congenital pneumonia. Doctors gave him little chance of survival. And if that could be done, the son would be a completely recumbent child. It was just supposed to be a plant. I was even told to think about a second child as it would help me not to break down. You could say they just wrote my son off. These experiences were really very hard for me.
Photo From a private archive
At the hospital, we were told that Dawid was premature, had lung problems and needed to be taken care of. So we went for inhalation for two years. When he was eight months old, we noticed that he did not sit down, roll over, or start crawling. However, we were told that as a premature baby he would make up for it all in time. The surprise came after 1,5 years.
It was then that we accidentally found out that David had four-limb cerebral palsy. The doctor told us about this during a routine visit. When I asked why no one had told us this before, he replied: You know, you don’t tell your parents that right away. There are different forms of it, sometimes the kids get out of it. David was not one of these children.
- Cerebral palsy – what is this disease?
Due to the lack of diagnosis, we rehabilitated mainly the lungs for two years, not focusing on improving our son’s physical fitness.
An operation that wasted years of hard work
When we found out about David’s cerebral palsy, we started going to private rehabilitation classes. There were progress, perhaps not very visible on the outside, but we saw it very clearly. David himself started to eat the main course, he managed to go out and go down the stairs (this is how we exercised the leg muscles).
In 2015, it turned out that the son had a dislocated right hip joint. He was nine then. In order for him to continue exercising, and thus fight for his independence, an operation was necessary. The procedure was actually successful, the only downside was that his pelvis was not properly positioned. This proved to be the cause of the later problems. Another operation was required to correct this. It was carried out this year. She was a complete surprise for us.
Photo From a private archive
The son left the operating room plastered from the waist down. It was a shock, no one told us there would be any gypsum. Worse, in the case of our son, plaster is a disaster – when it is immobilized, we lose all the skills we have already acquired.
After the surgery, no one came to us, no one explained anything. I was also unable to find out anything. It was only the next day that I saw the doctor who operated on David. He explained that it was necessary to cut the bones and put a plaster in place for immobilization. After two weeks it was taken off, and a month later I sent the doctor an x-ray so that he could see how the bone was positioned (it was pointing inwards). Another surgery that was supposed to bring improvement did not help. But I heard that nothing more can be done and it just has to be that way.
The effect is that the son’s right leg, positioned at the wrong angle, is somehow twisted to the left, which causes pressure and pushes it outwards. Dawid is not able to straighten it, drive it away, there is no way that it will stand on it. The result is a curvature of the spine. When David sits, it’s like on one buttock. At night, she actually only sleeps in one position. It all means a lot of pain to him.
The only chance for any independence
When I heard that there is no hope for David, I looked for help even more intensively, this time abroad. This is how I found an orthopedic clinic in Aschau im Chiemgau in Germany. When the local doctor saw his son’s leg, he was very surprised by the way the bone was positioned. He kept asking why it was done this way. I was not able to answer him because I do not know it myself. The most important thing, however, is that the clinic decided that it could help.
That meant another operation, six weeks in bed, special orthoses extending from the torso down and a special wheelchair to keep the spine straight. Thanks to all this, however, it will be possible to correctly position David’s pelvis and leg, straighten his spine, and less muscle spasticity (excessive tension).
Photo From a private archive
During this consultation, I felt that they really took care of us. I was explained about the course of the operation, possible complications, and what to expect. In Poland, I did not feel it, even during private medical consultations. The decision was obvious: David will be operated on in this clinic.
This operation, which he underwent in January, was supposed to end all our problems, unfortunately, it revealed other problems that we must deal with as soon as possible, so that David could live without suffering.
Unfortunately, consultations, surgery, orthopedic protection are other cost estimates for which it is impossible to prepare. Again, we need tens of thousands of zlotys, again funds are needed as soon as possible, because the operation was scheduled for April.
Photo From a private archive
I believe that we will get to the point where I can say: Dawid is independent, I know that he will be able to handle it. It all boils down to the fact that we will not be there one day. So I would like my child to be independent in any way and to be able to cope with life. I cannot imagine a situation that he will end up in some center. There are also very few of these.
The boy’s next surgery is scheduled for April. Currently, there is a collection for orthopedic operations and the purchase of orthoses. The family needs over 60 thousand. zloty. You can help David in his fight for independence – for details, see https://www.siepomaga.pl/dawid-oczkos
Must be successful. I do not give up
One of the most difficult things about this situation is that David becomes more and more aware of what is happening. He is a mentally fit child – he goes to school, he studies normally. However, I see that it is difficult for him to deal with his emotions, difficult for him to express. When he gets nervous, instead of talking to us about it, he suffocates everything inside himself. You can see how these emotions go wild in him, when, for example, we dress, which is difficult for him and for me, and something does not work out, he grabs my hand very tightly and squeezes me with all my strength. Such reactions appeared in him about 1,5 years ago. I think the reason may be that he is becoming more and more aware of his disability.
Photo From a private archive
Sometimes he asks us what it will be like when in a few years he wants to go out with his friends. We try to talk to him, explain that this is what we exercise for and that we do all the hard things for him, that this is what surgery is for. Then he understands us, but perhaps more to himself, he repeats: I have to do this, I have to.
David has his dreams. Would like to be a policeman. However, she is worried about how it will work when it is not fully operational. Then I tell him that he will be an office policeman and he will solve various tasks in the office. He clearly does not allow himself to think that he will function as he does now. He believes that he will succeed, even that he will run someday. I wish that would happen, or at least that he could stand alone and move around without a wheelchair. This is our dream. I believe it will be a success. Must be successful. I do not give up.
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