Parents of Spina Bifida Children ask for govt assistance

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Parents of children living with disabilities have requested that their children should be put into consideration for government programs to help parents take care for their children, particularly those who are born with spina bifida and hydrocephalus.

Speaking with Radio Rukungiri, Ms. Birungi Constance, the mother of 12-year-old Cranmer Birungi, who was born with spina bifida and acquired hydrocephalus following surgery, stated that raising and caring for a childlike that is difficult.

The most difficult aspect of it is that certain schools reject children with disabilities which has exacerbated stigma among patients and their families for being marginalized in the community.

Birungi has petitioned the government for funding so that they can educate, feed, medicate and care for these children.

Constance Birungi told our reporter during a courtesy visit at her home in the Kitumura cell, Kyatoko ward Easter division Rukungiri municipality Rukungiri district in conjunction with Spina Bifida and Hydrocephalus Association of Uganda (SHAU), a non-governmental organization that provides support to families with children with disabilities, particularly those born with spina bifida and hydrocephalus conditions.

In addition to providing wheelchairs, medication, pampers, food, transportation, and education, SHAU also trains parents on how to care for these children.

Rukungiri District is one of the districts in western part of Uganda where infants are born with hydrocephalus and spina bifida conditions.  

CUE IN………………………. CONSTANCE NGO’S

Birungi Constance claims that it is difficult to send Cranmer and other disabled children in the area to school because they lack necessities like wheelchairs, medications, and transportation.

More on that, schools have refused to accept these children because they lack the resources to support them and teachers are ignorant of these conditions that affect infants.

In Cranmer’s case, his mother claims that he is a bright child at home because he understands everything, If Cranmer had the opportunity to attend school, he would undoubtedly succeed, but the distance between his house and the school, as well as the difficulty of getting to the main road from his home, is additional obstacles.

CUE ……………………. COSTANCE ON SCHOOLS

At his age, Cranmer also finds it awkward to go to school with students who are physically normal since his organs aren’t able to regulate or halt the flow of waste products like pee and feces at any moment.

Cranmer’s mother, Birungi Constance, claims that her son had fisrt surgery on his back for spina bifida then the second surgery was on his head immediately when hydrocephalus was discovered, allowing him to maintain full sensory function.

Although Cranmer is unable to walk, he is able to converse, listen, eat, and perform other tasks with his hands.

His lower body parts were paralyzed from the hip down after the second surgery, this has made it impossible for him to stand, walk, or even stand without assistance.

This condition also played a major role in his decision to skip school.

At this point, Birungi Constance thanked non-governmental organizations like the Spina Bifida and Hydrocephalus association of Uganda, Mbale referral hospital, Organized Useful Rehabilitation Services hospital in Ruharo Mbarara, etc.

Cranmer’s family is doing everything they can to treat, feed, and transport him to multiple hospitals within their means.

William and Constance Birungi are the parents of Cranmer Birungi. By the time of our reporter’s arrival, Mr. William Birungi wasn’t home, but his wife, Constance Birungi thanked her husband for being supportive in raising Cranmer during the previous twelve years.

God has blessed this couple with other normal-looking children, but Cranmer is the firstborn.

After giving birth to a child with spina bifida, the Birungi family said that they found it difficult to accept the diagnosis because they had never seen it anywhere.

However, with time spent visiting hospitals such as Mbale and meeting with medical professionals and other parents of children with similar disabilities, they grew accustomed to the situation and discovered that having a child with such a disability is normal now the couple treats Cranmer like any other child of they own.

After giving birth “The community did not take it as a disability, they even began calling us names” She said.

In light of the fact that having children with spina bifida and hydrocephalus at the same time is typical, Birungi Constance urges all women and families to seek medical attention for their children and when considering to start having babies, Birungi recommended that couples take folic acid supplements or consume foods high in folic acid before becoming pregnant and during the first several months of the pregnancy.

CUE IN………… CONSTANCE ON SPINA BIFIDA AND ADVIVE

Additionally, our reporter paid a visit to the family of Mr. Katwiremu Ibrahim and his wife, Twongirwe Asiant, who also have a child with spina a bifida and hydrocephalus.

Twongirwe states that her 9 years child’s situation has never been easy.

People have been calling her names abusively since she gave birth to Ibrahim, and the youngster has become a laughingstock in the neighborhood.

Twongirwe informed our reporter that in addition to her child’s illness, the community has also been a strain.

She is appreciative of her family’s assistance, which has provided when required.

“In the end, as a family, we stayed firm because we discovered that this condition is normal and that anybody may give birth to a child like my son” she said.

The community has called us names and even linked our child’s condition to witchcraft, which has made us uncomfortable.

CUE IN……………………. TWONGIRWE ON COMMUNITY

“In light of this, I would also want to add my voice to the recommendation given to expectant mothers and women to constantly seek medical counsel, consume a diet higher in folic acid-containing foods, particularly vegetables, or continue taking folic acid supplements in order to prevent having such children” She added.

CUE IN…………………. TWONGIRWE ON ADVICE

Twongirwe expressed gratitude to SHAU and OURS HOSPITAL for their unwavering support in providing medical assistance, training, and other forms of aid to families with disabled children.

These organizations have been there for these families no matter what.

Furthermore, Birungi Constance requests that home visits be embarked on by SHAU and OURS Hospital Ruharo Mbarara.

CUE In……………. TWONGIRWE ON ORGANISATIONS

Godfrey Kakweza, a neighbor of Katwiremu and Twongirwe, said on radio Rukungiri that he first found it difficult to live with the family in the same location, but that he eventually became accustomed to it.

In order to empathize to this, Kakweza informed our reporter that he had never encountered a person with this illness in the past.

After learning about this condition, Kakweza claimed, “I can easily ride the baby on his bicycle or even carry him.”

Kakweza urged parents to treat these children with love and respect, just like they would any other kids.

CUE IN……………… KAKWEZA ON PWDS

According to this study there should be more effort put in to sensitize the community more about spina bifida and hydrocephalus conditions in children (PWD’S).

Spina bifida is a congenital condition that affects the developing embryo when it is 21 days old. By the time the mother gets to know that she is pregnant, the spinal cord is already affected and it is irreversible. While hydrocephalus is an abnormal increase of water in the brain. This makes ventricles in the brain enlarge to accommodate the excess fluids, causing an abnormally big head in children.