Some children are born from the back of Bifid. What is this spinal defect - and how to live with it?

Instructions "Medusa"

This article is part of our Meduzacare philanthropist support program. In March, she was dedicated to the back of Bifid. All materials can be read on a special screen .

Find out the main thing about this disease - right here

The Bifida’s back is rare, so you are unlikely to be well aware of the features of this disease. Most likely, you had not even heard about him before. The back of Bifida is a condition in which one or more vertebrae during the development of the fetus is not completely closed. This can lead to various violations - from a large hernia of the spinal cord, which is not covered with skin, visible with the naked eye and leads to serious health problems, to a small defect in the vertebra, which a person, quite likely, will never know and which is not even visible on an ultrasound during pregnancy.

Depending on the place and degree of defeat, there may also be :

• Motor disorders caused by weakness of the muscles of the legs or their complete immobility. In these cases, orthoses, special devices, crutches, an active stroller may be needed;
• Problems with urinary and feces incontinence. This can lead to complications such as urinary tract infections, hydronephrosis and some others.

The life expectancy of people from the back of bifid depends on the quality of medical care and the degree of damage. But it is impossible to talk about a reliable forecast for those children who are born now: medical care over time becomes better and incorrectly apply to current babies data related to people born, for example, in the 1970s. However, now it is clear that in severe form, the back of Bifida at a small age dies less and less children - more than 70% survive . The rest with a high probability will survive until adulthood. Among the group of people with the back of Bifid, born from 1963 to 1971 in the UK, the median life expectancy was 29 years. The study itself lasted 50 years, and at the time of publication 32% of the participants were alive .

The intelligence in the back of bifid usually does not significantly suffer: the indicators are often lower than the average, but within normal . At the same time, such children often have problems in learning, in particular, due to the worst ability to remember something.

Read other useful materials

In Russian there are not so many materials about the back of Bifid, which are written by people who are versed in this matter, but they are:

• A viewing article for doctors in the MSD Handbook (it is small, but there are many terms there)
• Sighting article for parents of patients in the "MSD" Handbook
• The text of the specialists of the Center for Congenital Pathology GMS Clinic
• Useful information from the Bifida Foundation

There are English-language materials (to read them without owning English, you can use online translators, for example , Yandex.Pisorer and Google translator , which can translate entire pages):

• Answers to questions of future parents from the American association back bifid
• Basic information from the American Academy of Pediatrics
• A selection of materials from American centers for the control and prevention of diseases
• Information from the British National Health Service

Try not to blame yourself

In the process of reading, you will definitely see that for prevention, the back of the bifid is recommended to all women who can get pregnant, take folic acid constantly: for some reason, the deficiency of folates increases the risk of developing the back of the bifid, and such a defect occurs in the third or fourth week after conception, when not everyone knows about their pregnancy and may not start taking it.

But if you did not take folic acid and the child found the back of Bifid, then you need to understand: the listed measures only reduce the risk of developing the back of the bifid, but do not exclude it.

If it is difficult for you because of guilt, you can contact the Foundation “Light in Hands”: there is a support group there, you can also get the individual assistance of a psychologist, including in the chat.

Choose how to proceed

If the doctor discovered the back of the bifid on ultrasound , parents have several options (though they are not always available):

• terminate pregnancy;
• carry out intrauterine operation;
• engage in the health of the child after his birth;
• Sign in the hospital a resolution for adoption.

Breeding pregnancy

Pregnancy can be terminated, but by decision of the consultation. For medical indications, terminating pregnancy is allowed at any time . A consultation is not needed up to 12 weeks - a woman’s desire is enough to terminate pregnancy, but during this period Bifid’s back is rarely found.

Intrauterine operation

This is an operation in which a pregnant woman is done approximately the same incision as with a cesarean section (slightly less), as far as possible, they eliminate the defect and wait until it will be possible to make a cesarean section and get the child in the normal period. It is not always possible to carry out such an operation - only if the term of pregnancy is from 19 to 26 weeks and if it is a difficult form of the back of Bifid (moreover, there should not be other circumstances that complicate the matter, like other malformations). However, you need to understand that the intrauterine operation does not solve all problems, although it certainly reduces the severity of complications. In addition, the operation increases the risks of premature birth and complications in this pregnancy and the following.

Intrauterine operations have been carried out in Russia since 2016 (namely in Moscow , although in other cities they are also trying to start doing this) and abroad. Charity funds used to help with operations in other countries, but now they send patients to Russian clinics. According to the founder of the Bifida Bifida Charitable Foundation Inna Inyushkina, in the Scientific Center for Obstetrics, Gynecology and Perinatology named after Academician V.I. Kulakov conduct such operations according to a compulsory medical insurance policy, and in the Lapino clinical hospital these operations are carried out at the expense of the hospital. With paying for travel, accommodation and other expenses, the fund helps .

The problem is not only that the places where such operations are performed is not enough-according to the Bifida Foundation, more than half of the disease is found after the 30th week of pregnancy, when to do a prenatal operation is too late, or even after birth, which complicates the rapid help of a children's neurosurgeon.

Medical intervention immediately after birth

If the operation was not carried out in utero, then you can eliminate the defect after the birth of the child. True, the outcome of such operations is somewhat worse. Such an operation must be done in the first two to three days after the birth of a child. But for this it is necessary that the child be born where there are competent children's neurosurgeons. “The situation in the regions is complicated by the fact that in each particular region there are not many children with the back of Bifida and doctors in the field are rarely encountered with such a pathology,” writes Inna Inyushkina. “Therefore, for a high-quality operation, we recommend choosing doctors specializing in this who work in Moscow and St. Petersburg in federal clinics.”

Resolution for adoption

In Russia in the hospital, you can refuse to raise a child and resolve his adoption. However, this entails the court and the requirement to pay alimony. It is reliably unknown how many children from the back of Bifid were refused by parents. According to Maria Polyanskaya, the head of the orphans of the Bifida Bifida Charitable Foundation, in most cases, especially in the period to the start of the fund, they refused such children from birth, because there was no sufficient information and help, and in the hospital they said: “Leave it, give birth to a new, healthy one, and this is better in an orphanage for the disabled.” The fund helps foster parents who want to take the child from the back of Bifid, but a large number of children are still left without parents.

If you decide to preserve pregnancy and educate the child further, think about how to help him

Many specialists of different profiles are always involved in the help of the child from the back of Bifida: for example, neurosurgeons, urologists, orthopedists, physical therapists, ergotherapists . For the best effect, they need to coordinate their actions and purpose. Some non -profit organizations (NPOs) help to get to specialists who are familiar with the specifics of Bifida and are ready to listen to each other. Also, some of them pay for other expenses that are inevitable at the back of Bifid. It will be useful to contact NPOs such as:

• "Bifid's back"
• "Rusfond"
• "Plus help to children"
• "He needs you"
• "Dobryakov Club"

Participate in making complex medical decisions

The child from the back of Bifid, most likely, will have to survive some more different interventions. It often happens that the next operation or any manipulation has many minuses and pluses. The doctor gives recommendations, but the final decision is made by parents in accordance with their values . Therefore, it is important for parents to delve in detail into the situation and begin to understand medical matters well. This will help:

• Video of the Bifida Foundation
• Position of the American Academy of Pediatrics
• Sighting article in the medical knowledge base Medscape
• There are several articles on the back of Bifida in another base of medical knowledge - uptodate (though access to full versions is paid)
• Various scientific research

Take care of abbreviation

So that motor disorders do not worsen the quality of life, regular classes with a physical therapist are important . It helps to move in such a way as to cope with the maximum number of daily affairs. At the same time, it is important to understand that not all children will be able to walk in the end, even if you deal with them around the clock.

In an ideal situation, the physical therapist should begin to deal with the child as early as possible . In the future, this can be done by the parents whom the specialist will be supervised. If the child passes the course every six months, and the rest of the time there are no classes, then there is little benefit. The problem is that in Russia a deficiency of competent physical therapists, although the situation is improving over time. “In many cities, we have their own specialists, physical therapists and ergotherapists who continue to oversee their family, constantly visit, advise parents, monitor the condition of the child,” writes Inna Inyushkina. - We are constantly teaching such specialists. <...> But if the family is in a city in which we still do not have a specialist, then we connect it online with our specialist in early intervention, neonatologist. This specialist leads a large number of newborns online. ”

If a child cannot walk or he doesn’t succeed as well as he would like, it is important to have a comfortable stroller. But getting such a free (like other technical means that help to move, for example orthodists) is very, very difficult . If there is no way to buy such funds yourself, contact the charity fund: there is a possibility that funds have money for the necessary rehabilitation funds. In addition, the lawyers of the fund can advise and help achieve the due for free or to knock out at least partial financial compensation from the state.

Give the child maximum independence

Many people from the back of Bifid, thanks to the achievements of medicine, grow up and can start families, work and live separately from parents. How can this be realized, described in detail in the materials of the American Association Bifida. However, of course, not everything is applicable in Russia, and if a person moves in a stroller, this significantly complicates the task.

Therefore, it is important from the very beginning to let the child do what he can do himself, and raise it as a member of society, and not limited in capabilities and greatly dependent on other people. For example, in school age, it would be good for the child to be able to insert a catheter into the urethra, and then he will be able to attend a regular school. It is important to give the child a choice, tell him about the disease, involve him in solving household problems, encouraging a manifestation of interest in something (sports, music, etc.), let him take care of himself (for example, take a shower), move without other people's help, go to a doctor. This - and much more - will help him become independent.

Daria Sargsyan

The editors thanks for the help in preparing the material of the pediatrician, the curator of the SPINA Bifida direction in the center of the congenital pathology of the GMS Clinic Emilia Gavrilov