Spina Bifida Public Association: raising awareness and breaking stigma

ASTANA – Spina Bifida Public Association (SBPA) was founded in 2015 by parents of children born with the disease to inform medical specialists, parents and the general public about the disorder. In an exclusive interview with The Astana Times, co-founders Anara Battalova and Aida Kolpakova shared their personal experiences and insights into how others can participate in the cause.

Anara Battalova (L), Aida Kolpakova and her daughter (R).

Anara Battalova (L), Aida Kolpakova and her daughter (R).

Spina bifida is a neural tube defect which occurs when the spinal bones do not close or develop properly. Depending on its severity, the disorder can result in bladder or bowel problems, various degrees of leg paralysis and accumulated fluid in the brain.

“During the pregnancy I attended the doctor regularly; I had five ultrasounds and no one told me that my baby had abnormalities. After giving birth to my child, I understood from the doctor’s reaction that something was wrong,” said Kolpakova.

When the youngster was born 15 years ago in the West Kazakhstan region, local doctors were unable to perform surgery and the family had to seek medical help outside the country. When a child is born there is usually a 48-hour window in which surgery is performed to close the defect and minimise future complications. In addition, advancements in neuroscience offer the possibility of operating on an unborn baby.

For the most part, such surgeries are performed solely in Astana and SBPA parents are actively advocating improving the situation at the regional level. They spoke at a Parliament session in December and cooperate with local political parties.

“We are closely working with the general public, parliamentarians and healthcare ministry officials, organising events and bringing attention to our cause,” said Battalova.

The association unites 400 children and their parents by providing advice and assistance to moms and dads whose kids were diagnosed with the disorder. SBPA’s biggest undertaking is to raise funds to open rehabilitation centres for children and adults throughout Kazakhstan. Such centres will provide clinical support for patients and consolidate the efforts of medical specialists.

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“We are looking for sponsors and investors who are going to help us open such centres, where we can help people with spina bifida have fulfilling lives and provide psychological support to pregnant women and their families,” said Battalova.

SBPA will hold a charity fashion show in early summer and Kazakh designer Bella Sat-Myrza is developing an adaptive clothing line that is trendy yet comfortable for people using wheelchairs. The models, mostly children with spina bifida, will demonstrate the summer denim collection. SPBA will be partnering with a local modelling agency that will provide technical assistance and teach the kids the necessary tips.

“We want to provide the participating children with active wheelchairs so they can go on the runway by themselves in a fashionable and beautiful manner,” said Kolpakova.

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The association’s immediate plans are to organise medical specialist home visits. Psychologists and ergotherapists will teach children how to move around the house and use various household objects without help, boosting their confidence and mood.

Together with the Kazakh Ministry of Healthcare, SBPA is developing informational leaflets to be distributed at women’s health centres and prenatal and obstetric departments at local hospitals.

“We want to invite all interested parties to partner with us. Together, we can show that our children are not confined to homes, that they have active and fulfilling lives,” said the founders.