Microcephaly: discoveries improve quality of life

Posted in July 26, 2021

Six years after the discovery of the relationship between the zika virus and microcephaly by a group of Brazilian researchers, many of the alterations caused by the Congenital Zika Virus Syndrome remain with uncertain treatment for the medical and scientific communities. Able to paralyze the growth of the baby's brain, the Syndrome causes problems that affect from cognition to motor capacity. Not all treatments, however, remain unknown. During the master's degree in Neuroengineering at the Santos Dumont Institute (ISD), in Macaíba (RN), researcher Valéria Azevedo discovered a new intestinal alteration in children, with diagnostic protocols and treatments already available in the literature. The survey, published in July in the Journal of Pediatric Urology, is added to a national project, coordinated by the Oswaldo Cruz Foundation (Fiocruz), which had already identified bladder sequelae in babies in previous years. Taken together, the research will have a direct impact on the quality of life of children who may be diagnosed and treated early for the conditions. 

Research at Fiocruz began in 2015, when the Ministry of Health announced, for the first time, confirmation of the relationship between the zika virus and the outbreak of microcephaly cases. At that time, the institution was a reference for the diagnosis of this type of congenital alteration for the Ministry of Health, and it began to establish partnerships with other research centers to investigate cases, especially those located in the Northeast region, where more than 80% of the diagnoses. 

“Our group works with pediatric urology. We entered this process when one of our colleagues began to observe that, in the magnetic resonance imaging of these children, the area that controlled the functioning of the bladder and urethra was affected in the areas damaged by the virus”, explains the project coordinator and researcher at Fiocruz, Lúcia Costa Monteiro. 

The group was the first to prove an alteration in the functioning of the bladder in these children, which was called “neurogenic bladder”. “From there, we started looking for more partnerships to be able to expand both the investigation and the care for these children. Instituto Santos Dumont (ISD) was one of the first of these partners, because we know that they have great expertise in this area of neurological patients”, says Lúcia. 

Four years later, the partnership would generate new discoveries: in addition to continuing the analysis of cases of neurogenic bladder among children, researcher Valéria Azevedo identified a new sequel in patients, this time, in the intestine. An evaluation carried out on 40 children revealed that 80% of them had both a neurogenic bladder and bowel. “Our study is the first to evaluate intestinal function”, reports Valéria. “This is important because we verified that, in fact, these children had these alterations because of the Syndrome, because other children who have microcephaly caused by other factors do not present the same problems”, he completes. 

Treatment

Once the problem was identified, the researchers were able to look into possible treatments. The first approach adopted was behavioral therapy. Mothers and fathers were instructed about care to deal with the specificities of these functions. Parallel to this, drug therapy takes place, accompanied by a urologist. “There are children who even need catheterization, but not all of them. The next step is to introduce sacral neuromodulation, which basically means that we are going to use electrodes to try to reorganize this neural network and, thus, make the bladder start working as it should”, says Valéria. 

The main impact of the discovery, according to the researcher, will be to allow early treatment for the condition that, if left untreated, can lead to hospitalizations and constant infections. “Unlike other conditions, such as motor and cognitive issues, which still do not have clear treatment protocols for these cases, the literature already has a lot of information about these changes in the bladder and intestine. Thus, we will be able to diagnose these children and treat them early, avoiding a series of more serious health problems that they could develop because of this”, says Valéria Azevedo.

 

“Seeing her suffering reduced pays off all the sacrifice”

For four years, the daughter's time to do the basic needs was one of the most distressing moments in the daily life of Elaine Cristina, 32 years old. Her daughter, Elisa, has microcephaly and, since she was five months old, has been monitored at the Anita Garibaldi Center for Health Education and Research (Anita), which is part of the Santos Dumont Institute (ISD), in Macaíba. “She peed only once a day. Sometimes I would go a whole day without doing it. Poop she spent seven days, ten days without doing. I had to give a laxative, do the procedures at home”, says Elaine. 

The long periods of break caused suffering in the child, who often cried for not being able to eliminate. “It was very painful. Not only because I had to do a lot of things for her to be able to pee and poop, but because she was in a lot of pain, she was nervous... we who are mothers see this and have our hearts in our hands, not knowing what to do” , reports. 

In 2019, the daughter was finally diagnosed with a neurogenic bladder and bowel, and the process of physiotherapy and re-education began to improve the symptoms. “She did physical therapy and really improved. There was also the issue of re-education, water, food... bladder physiotherapy was fundamental in her life, it's even hard for me to believe how much she improved. We struggle a lot with these children, but seeing their suffering reduced pays for all the sacrifice”, points out Elaine. 

The general director of ISD and supervisor of Valéria's master's research, Reginaldo Freitas Júnior, points out that the results presented by the research are an example of how science can serve as a transformer of society. “In a country that is facing the inequalities that Brazil today needs to overcome, the results of this work fill us with pride and hope that Brazilian science will persevere as a powerful catalyst for guaranteeing people's rights, especially to health and dignity”, he stresses. .

The strengthening network for the care of children affected by the Syndrome with sequelae related to the bladder and bowel, coordinated by Lúcia Costa Monteiro, from Fiocruz, already has 23 professionals, of which 6 are Masters and 8 Doctors. 

The next steps, according to the researchers, involve making other mothers, like Elaine, have access to the necessary treatments to improve their children's quality of life. “We want to continue strengthening care for these children and expand the services in Brazil that can offer adequate diagnosis and treatment, following the research protocols that are published”, says Lúcia Costa Monteiro. Since 2015, more than 3,500 children have been diagnosed with Congenital Zika Virus Syndrome in Brazil. 

Partnerships

The continuity of the project is possible thanks to funding for research by the National Council for Scientific and Technological Development (CNPq). It was because of him that Valeria, for example, was able to continue her research even after completing her master's degree in Neuroengineering, in 2020.

 “Research continues, including low-cost devices that will allow us to treat more children who are far from large centers”, says Valéria. 

For Fiocruz researcher Lúcia Costa Monteiro, national partnerships will be central for this to happen. “This approach, of treating the neurogenic bladder and intestine together, already exists, but, in the case of Zika, Valéria's article was the first to bring this out in a strong way since the title. It is an important pioneering spirit that brings new knowledge. The very way in which ISD professionals treat neurogenic bowel is quite different from what is done in most cases. So, it brings a lot of news and information, and this is very important. We at Fiocruz, who have been treating patients with neurogenic bladder for over 30 years, have learned a lot from the participation of the ISD group. This type of partnership and research network is what will make us advance even further in the subject”, adds Lúcia. 

Text:  Mariana Ceci / Ascom – ISD

Photograph: Mariana Ceci / Ascom – ISD

Communication Office
comunicacao@isd.org.br
(84) 99416-1880

Santos Dumont Institute (ISD)

It is a Social Organization linked to the Ministry of Education (MEC) and includes the Edmond and Lily Safra International Institute of Neurosciences and the Anita Garibaldi Health Education and Research Center, both in Macaíba. ISD's mission is to promote education for life, forming citizens through integrated teaching, research and extension actions, in addition to contributing to a fairer and more humane transformation of Brazilian social reality.

Communication Office
comunicacao@isd.org.br
(84) 99416-1880

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Microcephaly: discoveries improve quality of life

Six years after the discovery of the relationship between the zika virus and microcephaly by a group of Brazilian researchers, many of the alterations caused by the Congenital Zika Virus Syndrome remain with uncertain treatment for the medical and scientific communities. Able to paralyze the growth of the baby's brain, the Syndrome causes problems that affect from cognition to motor capacity. Not all treatments, however, remain unknown. During the master's degree in Neuroengineering at the Santos Dumont Institute (ISD), in Macaíba (RN), researcher Valéria Azevedo discovered a new intestinal alteration in children, with diagnostic protocols and treatments already available in the literature. The survey, published in July in the Journal of Pediatric Urology, is added to a national project, coordinated by the Oswaldo Cruz Foundation (Fiocruz), which had already identified bladder sequelae in babies in previous years. Taken together, the research will have a direct impact on the quality of life of children who may be diagnosed and treated early for the conditions. 

Research at Fiocruz began in 2015, when the Ministry of Health announced, for the first time, confirmation of the relationship between the zika virus and the outbreak of microcephaly cases. At that time, the institution was a reference for the diagnosis of this type of congenital alteration for the Ministry of Health, and it began to establish partnerships with other research centers to investigate cases, especially those located in the Northeast region, where more than 80% of the diagnoses. 

“Our group works with pediatric urology. We entered this process when one of our colleagues began to observe that, in the magnetic resonance imaging of these children, the area that controlled the functioning of the bladder and urethra was affected in the areas damaged by the virus”, explains the project coordinator and researcher at Fiocruz, Lúcia Costa Monteiro. 

The group was the first to prove an alteration in the functioning of the bladder in these children, which was called “neurogenic bladder”. “From there, we started looking for more partnerships to be able to expand both the investigation and the care for these children. Instituto Santos Dumont (ISD) was one of the first of these partners, because we know that they have great expertise in this area of neurological patients”, says Lúcia. 

Four years later, the partnership would generate new discoveries: in addition to continuing the analysis of cases of neurogenic bladder among children, researcher Valéria Azevedo identified a new sequel in patients, this time, in the intestine. An evaluation carried out on 40 children revealed that 80% of them had both a neurogenic bladder and bowel. “Our study is the first to evaluate intestinal function”, reports Valéria. “This is important because we verified that, in fact, these children had these alterations because of the Syndrome, because other children who have microcephaly caused by other factors do not present the same problems”, he completes. 

Treatment

Once the problem was identified, the researchers were able to look into possible treatments. The first approach adopted was behavioral therapy. Mothers and fathers were instructed about care to deal with the specificities of these functions. Parallel to this, drug therapy takes place, accompanied by a urologist. “There are children who even need catheterization, but not all of them. The next step is to introduce sacral neuromodulation, which basically means that we are going to use electrodes to try to reorganize this neural network and, thus, make the bladder start working as it should”, says Valéria. 

The main impact of the discovery, according to the researcher, will be to allow early treatment for the condition that, if left untreated, can lead to hospitalizations and constant infections. “Unlike other conditions, such as motor and cognitive issues, which still do not have clear treatment protocols for these cases, the literature already has a lot of information about these changes in the bladder and intestine. Thus, we will be able to diagnose these children and treat them early, avoiding a series of more serious health problems that they could develop because of this”, says Valéria Azevedo.

 

“Seeing her suffering reduced pays off all the sacrifice”

For four years, the daughter's time to do the basic needs was one of the most distressing moments in the daily life of Elaine Cristina, 32 years old. Her daughter, Elisa, has microcephaly and, since she was five months old, has been monitored at the Anita Garibaldi Center for Health Education and Research (Anita), which is part of the Santos Dumont Institute (ISD), in Macaíba. “She peed only once a day. Sometimes I would go a whole day without doing it. Poop she spent seven days, ten days without doing. I had to give a laxative, do the procedures at home”, says Elaine. 

The long periods of break caused suffering in the child, who often cried for not being able to eliminate. “It was very painful. Not only because I had to do a lot of things for her to be able to pee and poop, but because she was in a lot of pain, she was nervous... we who are mothers see this and have our hearts in our hands, not knowing what to do” , reports. 

In 2019, the daughter was finally diagnosed with a neurogenic bladder and bowel, and the process of physiotherapy and re-education began to improve the symptoms. “She did physical therapy and really improved. There was also the issue of re-education, water, food... bladder physiotherapy was fundamental in her life, it's even hard for me to believe how much she improved. We struggle a lot with these children, but seeing their suffering reduced pays for all the sacrifice”, points out Elaine. 

The general director of ISD and supervisor of Valéria's master's research, Reginaldo Freitas Júnior, points out that the results presented by the research are an example of how science can serve as a transformer of society. “In a country that is facing the inequalities that Brazil today needs to overcome, the results of this work fill us with pride and hope that Brazilian science will persevere as a powerful catalyst for guaranteeing people's rights, especially to health and dignity”, he stresses. .

The strengthening network for the care of children affected by the Syndrome with sequelae related to the bladder and bowel, coordinated by Lúcia Costa Monteiro, from Fiocruz, already has 23 professionals, of which 6 are Masters and 8 Doctors. 

The next steps, according to the researchers, involve making other mothers, like Elaine, have access to the necessary treatments to improve their children's quality of life. “We want to continue strengthening care for these children and expand the services in Brazil that can offer adequate diagnosis and treatment, following the research protocols that are published”, says Lúcia Costa Monteiro. Since 2015, more than 3,500 children have been diagnosed with Congenital Zika Virus Syndrome in Brazil. 

Partnerships

The continuity of the project is possible thanks to funding for research by the National Council for Scientific and Technological Development (CNPq). It was because of him that Valeria, for example, was able to continue her research even after completing her master's degree in Neuroengineering, in 2020.

 “Research continues, including low-cost devices that will allow us to treat more children who are far from large centers”, says Valéria. 

For Fiocruz researcher Lúcia Costa Monteiro, national partnerships will be central for this to happen. “This approach, of treating the neurogenic bladder and intestine together, already exists, but, in the case of Zika, Valéria's article was the first to bring this out in a strong way since the title. It is an important pioneering spirit that brings new knowledge. The very way in which ISD professionals treat neurogenic bowel is quite different from what is done in most cases. So, it brings a lot of news and information, and this is very important. We at Fiocruz, who have been treating patients with neurogenic bladder for over 30 years, have learned a lot from the participation of the ISD group. This type of partnership and research network is what will make us advance even further in the subject”, adds Lúcia. 

Text:  Mariana Ceci / Ascom – ISD

Photograph: Mariana Ceci / Ascom – ISD

Communication Office
comunicacao@isd.org.br
(84) 99416-1880

Santos Dumont Institute (ISD)

It is a Social Organization linked to the Ministry of Education (MEC) and includes the Edmond and Lily Safra International Institute of Neurosciences and the Anita Garibaldi Health Education and Research Center, both in Macaíba. ISD's mission is to promote education for life, forming citizens through integrated teaching, research and extension actions, in addition to contributing to a fairer and more humane transformation of Brazilian social reality.

Communication Office
comunicacao@isd.org.br
(84) 99416-1880

Share this news