Betrayal of a loved one
The problem of cerebral palsy is not particularly covered in our country, it is not customary to discuss it, everyone tries to keep silent about it rather than fight it. Children with cerebral palsy are considered outcasts; it is quite difficult for them to adapt to society, however, they are people just like everyone else. Life with cerebral palsy is difficult, but children with such a diagnosis have the right to live and develop, like all other full-fledged members of society.
The husband left Anya after learning about the terrible diagnosis. He didn’t want to put up with the fact that he would have to take care of sick children, that they were still defective and what was the point of spending time and money on their treatment? This was his logic, according to Anya.
In general, she was left alone with two sick girls, completely unaware of what awaited her.
Characteristic
Cerebral palsy is a collective name that includes various movement disorders. They arise during fetal development due to factors that lead to brain damage. Often it is fetal hypoxia that leads to the baby being born sick. Other causes include birth trauma, somatic illnesses in the mother, infections and premature placental abruption.
Parents may notice the first symptoms already when the child is born. It also happens that the disease is diagnosed later, during the first year of life. It is important to identify the pathology as quickly as possible, because further treatment will depend on this.
If a woman does not want her child to suffer from cerebral palsy, then it is extremely important to take care of prevention. You should think about it even before conception occurs. If you take into account some recommendations, then you will be much more likely to give birth to a healthy baby.
Prevention measures:
- Pregnancy needs to be planned, and it is important to make sure that everything is in order with the health of mom and dad.
- A woman should stop smoking and drinking alcohol. It is advisable to do this at least six months to a year before conception.
- It is important to eat properly during pregnancy, as well as during lactation.
- It is necessary to regularly monitor the level of hemoglobin in the blood. If necessary, this indicator should be normalized.
- It is imperative to treat all viral and infectious diseases in a timely manner so that they do not affect the child’s condition.
- Childbirth should take place exclusively in a clinic, and it is advisable to choose good specialists.
If it was not possible to avoid the occurrence of the disease, you will need to begin treating it immediately. How long the child will live will depend on this. Also, timely therapy will prevent the development of serious abnormalities that are often observed in sick children.
Search for like-minded people
Of course, people with common problems move in the same circle. Anya met one mother who told her that the child was also sick, and she really dreamed that he would at least learn to look after himself. And she was recommended to send him to music classes. Of course, it looks crazy: a child diagnosed with cerebral palsy plays a musical instrument. That mother explained to her that the piano develops both motor skills and some areas of the brain that are responsible for development. Hope dies last, as they say, and life with cerebral palsy has shone with new colors.
What does genetics have to do with cerebral palsy?
Cerebral palsy is a group of different conditions, a syndrome that has several causes. According to geneticist-endocrinologist and pediatrician Natalia Belova, quite often a child is given this diagnosis, arbitrarily naming the reason and stopping the examination. Ekaterina Pomerantseva believes that even with obvious factors for the occurrence of cerebral palsy, the patient’s condition may have a genetic cause.
Parents need to distinguish signs that may indicate a genetic origin of cerebral palsy. This is important because it will be necessary to change the standard rehabilitation scheme - massage, gymnastics, speech therapy and sensory room - and adapt to the specific needs of the patient. Pomerantseva names the following signs that could become red flags:
- absence of a pronounced condition in the perinatal period;
- unstable, paroxysmal course of the disease, dependence on environmental factors, nutrition, body temperature;
- normal on MRI or damage limited to the globus pallidus (paired area of the lenticular nucleus of the cerebral hemisphere. - Note TD);
- isolated muscle hypotonia, high severity of ataxia (impaired coordination of muscle movements. - TD's note), paraplegia (complete loss of the ability to voluntarily move the upper or lower extremities. - TD's note);
- impaired eye movement, rigidity instead of spasticity (limitation of muscle mobility due to their tension. - Note TD);
- signs of peripheral nerve damage: decreased reflexes, loss of sensitivity.
In an ideal situation, genetic testing for cerebral palsy should begin after an MRI, examination by a geneticist and biochemical analysis.
What are the analysis methods?
Next-generation sequencing NGS is a technique for determining the nucleotide sequence of DNA and RNA to obtain a description of its primary structure.
Tandem mass spectrometry (TMS) is a method for studying and identifying a substance, allowing one to determine the concentration of various components in it.
Chromosomal microarray analysis (CMA) is a molecular genetic study of a karyotype, a set of characteristics of a complete set of chromosomes inherent in human cells.
“In this case, it is cheaper and more accessible to do an analysis of the child’s karyotype, which in many places is carried out under compulsory medical insurance, and also to do tandem mass spectrometry (TMS), which can also be done for free,” Pomerantseva believes.
If the medical history, examination, tests and MRI indicate perinatal brain damage, then additional examination is not required and, most likely, the cause of cerebral palsy is brain damage. But if all these results do not agree with each other or there are any of the red flags listed above, genetic testing is necessary.
Treatment with music
Anya began to look for a teacher who would take the girls to teach her. At that time the kids were 5 years old . One girl had already begun to have serious pathologies, seizures , and hope was dwindling every day. After a long search, the teacher was finally found. The girls started classes and life with cerebral palsy has not become the same. Not to say it was easy. It was incredibly difficult.
As a result of the lessons, one girl learned to serve herself, and she began to be able to remember melodies and notes. The second girl, unfortunately, failed. At the age of 9 she passed away.
Anya took this death very hard, but the second twin continued to live, play the piano, continued her development and did not give up. In addition to the piano, she went to all sorts of developmental clubs, and, to her credit, there was a result! I could write for a long time about this struggle, but I think it’s important to tell you about the result that we have today.
Not a fairy tale about Cinderella
There are no special requirements for clothing for a child with cerebral palsy. True, Lika’s mother only buys things made from cotton fabric, but this is due to allergies.
For children with cerebral palsy, the main thing is shoes. For those babies who cannot walk on their own, orthoses are needed (an external medical device designed to change the structural and functional characteristics of the neuromuscular and skeletal system - editor's note), costing from 30,000 to 50,000 rubles. Lika wears orthopedic corrective shoes, which are made to order: she has a large difference in the length of her legs. While it was half a centimeter, Erna put on a heel pad, but now the difference is already 1.8 centimeters. For a year you need two pairs of winter shoes, they wear out faster, one autumn-spring outdoor boots and one for kindergarten, plus summer shoes. On average, for example, sandals for a kindergarten alone cost 5,000 rubles, winter shoes - 6,000-7,000 rubles. In total - about 20,000 rubles. Lika is growing very slowly; if the process goes faster, expenses will increase.
“My main task is not to cure my daughter one hundred percent, because cerebral palsy cannot be cured. Symptoms of the disease can only be minimized, reduced to the maximum. My key goal is to adapt her to life so that she can take care of herself. After my illness, I realized: I don’t know what will happen tomorrow. She doesn’t take care of herself, doesn’t dress herself, doesn’t go to the toilet herself - everything is done by hand. I’m the only one with the child, so she needs to learn to live on her own.”
We also need one pair of splints for the arm and leg (a splint made from a gypsum ingot - editor's note), it costs Erna 14,000 rubles, it lasts for a year.
Life with cerebral palsy today
Currently, Olya (not her real name) is a 3rd year university student, communicates with her peers, and has a boyfriend. Olya does not intend to die or get sick. Yes, it’s difficult for her, yes, sometimes she has seizures, but she is a completely full-fledged person who feels and lives, who dreams, sets goals and achieves them! I think that such examples can inspire hundreds of parents who are faced with a similar problem.
The main thing is not to give up, but to move forward and look for ways to solve the situation!
PS Anya, by the way, met a man several years after the death of one daughter. Now she is quite happy. She is confident that the worst trials are behind her.
Virginia Ilman, Krasnodar.
The cycle of doctors in nature
To maintain and improve the child’s condition, a combination of treatment, prevention and medical rehabilitation methods is necessary.
She can hardly count how much money Erna gives for all sorts of activities, it’s a cycle: she gave - she took - she gave.
Swimming lessons brought very good results, she said. For the second year now, Lika has been going to the swimming pool with the only trainer in the city who works exclusively with disabled children. All the specialists noticed that after Lika started working out, her back became stronger and her muscle tone became easier. Classes are free due to disability. For the same reason, the girl does not pay for kindergarten; without her disability it would cost 3,000 rubles. Lika attends a kindergarten for visually impaired and blind children. He goes to a regular group, not a correctional group - he tries to follow the program, but, naturally, he lags behind.
“We try to get around by minibuses, not by taxi. True, we need to be very careful - there are problems with the immune system, and any illness accompanied by a rise in temperature is a rollback of the results that we have achieved, a regression.”
The child also undergoes two types of rehabilitation courses free of charge.
“If our disability is taken away, then for the first ones we will have to pay about 50,000 rubles, they take place every three months, for the second - 12,000 rubles, they are monthly.”
A series of massages of 10 sessions costs 5,000 rubles, this is the minimum course per month, but Erna cannot afford more, and even that is not always the case. In fact, it costs more, but the doctor knows Likina’s history and has been seeing the girl since she was a year old, so she makes a big discount.
One hour-long session with an orthopedist costs 700 rubles. The ideal option is an intensive course, it costs 21,000 rubles. A schedule that, according to the doctor, would suit Lika ideally: a three-week course and a two-week break - in a circle all year.
“We don’t have a clear schedule of procedures; it all depends on the budget. That is, this month, let’s say, they did a BAC (bioacoustic correction of the brain - editor’s note) for 8,000 rubles, so I’m postponing the massage. Or, for example, you bought boots, which means everything is postponed this month. If you calculate by procedures, then ideally you need 13,000-15,000 rubles per month, excluding the orthopedic course. If you have a disability, you can get massage, exercise therapy, and a correctional development center for free. But all this is not the same. Once you try a paid service, you will never go back to free ones. Because I see a 10-minute free massage and compare it to the hourly one that I pay for. And I also see results from them.”
