SCARY DIAGNOSIS

Just over a year and a half ago, the Axundovs family was looking forward to the birth of twin babies. But as fate would have it, one of the babies died, while the other, a girl, was saved. However, she was born weak, premature, and had to be kept in an incubator for some time. In a few months, the parents noticed that little Hacar somewhat dragged her arm and one of her eyes squinted slightly. In a year, the parents were told a terrible diagnosis - cerebral palsy. Today, she is one year and a half. Her right arm and leg are paralyzed and she cannot use them. All relatives spared no effort to help their baby girl recover. Endless treatments, massages, gymnastics, physiotherapy... Exhausted relatives appealed to the public: an expensive course of treatment (two therapeutic treatments at 10,000 dollars each), which will give little Hacar a chance to lead a normal life, is beyond the means of the parents. Charity volunteers launched a wide fundraising campaign in social media.

What is cerebral palsy?

According to Aida Aliyeva, deputy head of the "Azerbaycan usaqlari" [Azerbaijani Children] public association, who has for many years been engaged in charity work despite the existence of public hospitals and rehabilitation centres, there is no equipment in Azerbaijan which can put a child on their feet, and therefore we have to raise money for a trip to Israel.

Cerebral palsy (CP) is one of the most common causes for disability in children the world over. Cerebral palsy is the main cause for neurological disorders in childhood, being second only to mental retardation. According to global statistics, the disease affects from one to eight children per 1000 births in different countries. About 70 per cent of children become disabled due to disorders in the prenatal period.

Gulnara Agayeva, a neuropathologist at the children's neurological hospital, commented: "Cerebral palsy is a disease that is characterized by abnormalities in the child's development and anomalies at birth. In general, CP basic pathologies include underdevelopment, stunting, impaired hearing, vision and speech, sometimes fits of epilepsy".

According to the physician, the main risk factors for the disease are marriages involving blood relatives and closely related persons and intrauterine infections (that are most common in our country), as well as hereditary pathology. This does not mean that CP is hereditary, but a number of diseases and pathologies present in the history of the parents may contribute to the development of cerebral palsy. Obstructed (prolonged or too rapid) labour, birth traumas, autoimmune diseases and Rh-factor incompatibility should be mentioned as CP causes, too. Smoking and drinking by mothers are among the most adverse factors that increase the risk of cerebral palsy.

The disease can be identified early enough. A neurological hospital has the neonatal unit which admits newborns and babies up to one year old for treatment. There is a unit where children are treated after five years of age. In general, cerebral palsy is not disclosed in babies up to one year of age, and the syndrome is mainly defined as a developmental delay. It can be predicted already in hospital that the risk of cerebral palsy developing in rhesus babies with a concentration of bilirubin (yellow pigment) in their blood of more than 300-400 mmol/L is extremely high.

There are treatments, but no rehabilitation

According to the physician, the success of treatment and rehabilitation depends on the degree and type of disease. With hemiparetic cerebral palsy (hemiplegia), only one side - left or right - is affected. In this case, intelligence is practically not affected, only the movement of one arm and one leg is limited. With proper treatment and rehabilitation, such a child can become a productive member of society in the future; only a slight limp may remind about the disease. In some cases, following a surgery on tendons, the foot can fully rest on the floor and lameness vanishes almost completely. Such children with hemiparetic cerebral palsy may well attend school, only their physical education classes need be adjusted somewhat.

In the case of diplegia, either the upper or lower limbs are affected, with damage to the legs being more common. With this form of CP, intelligence is often not affected, either, and although a child would need a wheelchair to move about, they will be able to function and study normally.

One of the most severe forms of cerebral palsy is quadriplegia, which affects all four limbs.

According to Gulnara xanim, the State Children's Neurological Hospital provides its patients with free-of-charge treatment. The hospital makes use of gymnastics, physiotherapy and massage and offers services of a speech therapist, psychologist and psychotherapist. There are no sophisticated systems or swimming here. Children can get these treatments in rehabilitation centres.

All the necessary medicines used to treat CP (Mydocalm, Piracetam) may be obtained free of charge in public agencies, as they are provided by the state, the doctor says. According to Aida Aliyeva, the necessary equipment such as wheelchairs and crutches are provided by the state, too. "Many people think that nothing is being done," the volunteer says. "That is not so, you just need to contact the relevant agencies, where you will be given necessary things".

As for rehabilitation, here we have problems. There was a Children's Rehabilitation Centre functioning in Baku, but now it is closed for renovations. A guard at the building said it was closed about five months ago and it is unknown when the centre will be open again. According to available information, sick children were moved to a rehabilitation centre in Mardakan. But it is mainly intended for athletes who are injured, and therefore it often lacks places for children. Another rehabilitation centre is located in Saki.

Treatment for many years

Every child with cerebral palsy is considered a disabled person and receives a pension of 57 manats. After they reach 16 years, their disability status is to be determined depending on the severity of the disease. To receive treatment in a public hospital or rehabilitation centre, they need an appropriate diagnosis made at a local clinic. Crutches and wheelchairs are also provided on the basis of such a diagnosis.

Doctor Gulnara Agayeva says that the results of the work of physicians - neurologists, speech therapists, psychotherapists - are not always visible, as cerebral palsy treatment is a difficult task. "When a child, who got infected with a virus, comes to see a paediatrician - even if they were carried in the arms - they will be cured in a few days and be healthy again. This cannot be said about cerebral palsy, as it requires a very difficult and long treatment". And rather expensive at that. There are many centres in Baku that employ speech therapists, psychologists, masseurs. These are not healthcare facilities, but in the case of children with abnormalities, they work in close cooperation with doctors. Certified speech therapist Rana Aloyeva says: "I have a lot of children with cerebral palsy. But before starting to work, I first consult with the attending physician so that there would be no contra-indications for a number of treatments". According to the speech therapist, long sessions can bring about tangible benefits, but all such activities should be carried out in package, and most importantly, continuously and for quite a long time: more than one year, or even two. It is hard to imagine the despair of parents who often lose hope that their child will ever be able to become normal or at least be able to perform a minimum of functions. "For the parents of sick children, the main thing is to see the achievements, if minimal, of their child: now they have stopped drooling; now they are able to sit on their own..."

However, despite the abundance of rehabilitation centres (which offer corrective treatments not only for cerebral palsy, but also for developmental delay, as well as for autistic children and Down's syndrome sufferers) fitted with all the necessary equipment and aids, often with magnificent repair, there is one major drawback: all of them offer paid services. An hour-long session of a speech therapist costs, on average, 15 manats, that of a psychologist - from 15 to 20 manats. Then there are masseurs, specialists in physical therapy. Given that in order to achieve the greatest effect the children should attend the facility every day and undergo more than one treatment, it is clear that such a corrective rehabilitation costs parents a lot of money. For poor families, it becomes unbearable - they have to take out loans and get into debt, whereas there are a lot of families which cannot afford the expensive treatment at all. Moreover, many children cannot be taken out of the house because they have no immunity to viruses, and any increase in body temperature due to the common cold can lead to seizures and death. Such children should be treated at home. Understandably, making a house call is also very expensive.

At the level of public association

However, there is one public association in Baku that provides rehabilitation services free of charge. This is the Child Development Centre headed by Arzu Rustamova. Speaking to R+, Arzu xanim said that the centre is working under the early intervention programme. That is, the efficiency of the work depends on how early the parents asked for help and began treatment. "Along with experts and physicians, we have here art therapy, the system of education and preparation for school". Each year some seven-eight children, rehabilitated at the centre, go to ordinary comprehensive schools. The centre has been in operation since 2005. Many children have come here during this time: between last September and present day alone, the centre admitted 680 children.

This is an impressive figure, of course, but having one, even well-equipped centre is not enough to meet the needs of all sick children. Arzu xanim says: "Although we are called a public association, we work in conjunction with the state; we do not counterpose our effort to that of the state, but try to complement it".

This programme involves children aged between one and seven years old because treatment gives the best results during this period. One course of group therapy lasts for 15 days, and depending on its results, the child is referred to an individual correction.

"Any work is productive, and from this point of view, it is very important to ensure collaborative efforts of doctors, specialists and parents. Mother is the best doctor and therapist for her child. Here we hold organized meetings and workshops with parents. It is important that parents do not withdraw into themselves, understand that they are not alone," she said. In particular, she noted, it is necessary to understand that this is a long process which requires maximum concentration on the problem and huge energy input; then any work will be productive and will help make a child's life better.

According to the head of the centre, preventive efforts must begin as early as at the level of antenatal clinics because health of the mother is a fundamental factor in this disease. Here we should consider not only medical records, but also the social aspects of a woman's life. "In the past, there were mother-and-child rooms in clinics, where attention was paid to the psychosocial aspects of child development. The social aspect aims at explaining to the mother the need to provide for the full-fledged development of the child and accurately track any deviations from the norm," A. Rustamova says.

We need funds

Children with cerebral palsy also dream of a normal and happy life, but instead they are confined to their incapacitated bodies for a long time; and it was not their fault.

We must realize that the treatment and rehabilitation of such children are still not at a sufficiently high level in Azerbaijan, which is recognized by their parents, too. They are restricted by the age - if a child does not get effective treatment until the age of seven, there will be no tangible improvements in the future. Parents of sick children also say that this is a disease of "poverty". Basically, it is encountered in those families which could not pay for normal prenatal care and labour management, as cerebral palsy often occurs due to birth trauma. There is a vicious circle here - if you do not have money, you get a sick child coupled with the inability to treat them at a high level. As a result, children with the CP syndrome are losing precious time. Parents of sick children tell that doctors from Tula periodically come to Azerbaijan to share their experience. As part of their visit, they examine Azerbaijani children with cerebral palsy and perform surgeries which cost 1,500 dollars each. Tula doctors say that such children can really be cured in Russia by the age of seven, and in the most severe cases at that. After treatment, children at least can move around somehow and even to talk sometimes.

Unfortunately, there is no precise statistics in Azerbaijan on how many children with cerebral palsy are registered. It is ostensibly for this reason that not all of those eligible receive free crutches and wheelchairs. That is why it is difficult today to determine how effective the aid is, and how many children could be saved from disability. I wonder what is in store for such children, when they become very lonely in the future and be left without the help of their family and friends? One thing is clear, however: Azerbaijan should create the Assistance Fund supporting children with cerebral palsy, and free rehabilitation centres where they not only could receive long-term treatment, but also, if necessary, to live in them under the supervision of specialists.