Like most first-time mothers, when Catherine Karinganire got pregnant five years ago, she was excited. Besides the bouts of fatigue and the big appetite, the pregnancy was normal.

Karinganire and her husband planned for the birth to the last detail and when she eventually went into labour and gave birth to their son six hours later, both parents were over the moon. Everything had gone well, Karinganire thought to herself. Unknown to her at the time was the fact that her beautiful son had been born with a condition called Spina Bifida. 

Spina Bifida is a condition that can happen anywhere along the spine if the neural tube does not close all the way making the backbone that protects the spinal cord fail to form and close as it should. This often results in damage to the spinal cord and nerves and might cause physical and intellectual disabilities that range from mild to severe. Spina Bifida is usually noticeable at birth. 

For Karinganire, the news was shocking and for a while her emotions went from numb and sad to angry and even scared.

"I sat there and listened as the doctor told me about my baby’s condition. I couldn’t believe it. Most mothers go into a delivery room when they are scared that their child could die or that they could bleed to death, but nothing prepares you for the news that your child is alive but they will never live a vibrant, normal life,” she says. 

Karinganire says that the last five years have been challenging and besides being very expensive to get him the help and care that he needs; the issues that come with raising a severely disabled child either makes a relationship between spouses stronger or destroys it. The latter was true for her. 

She says that she had to quit her job and take on the responsibility of caring for her son full time because he requires help to do everything. Today, she lives with her sister and survives on financial support from her family and that of her son’s father. 

"There are things that a housemaid can do, and those that she can’t. No one can manage to care for my son like I do. He uses a wheel chair and he mostly wears a diaper but we are thankful that so far, this has not affected his learning abilities. He likes to play, though he gets tired faster than everyone else. He has taught me so much about patience and acceptance. We have good days and bad days,” she says.

The issue that Karinganire is dealing with is one of the hundreds of issues that children are diagnosed with when they are still in the womb or when they are born. 

Dr. Daniel Tumwine is a pediatrician and owns a private clinic in Kampala. He says that most defects that affect children before they are born can be avoided if more caution is exercised.

"Although folic acid is not a guarantee that a woman will have a healthy pregnancy, taking folic acid can help reduce a woman’s risk of having a pregnancy that is for instance affected by Spina Bifida. It is best to take the folic acid as you prepare to get pregnant or as soon as you find out that you are,” he says 

Dr. Tumwine also says that expectant mothers should try to avoid some medicines and should try to manage their weight since issues like Spina Bifida mostly affect diabetic and obese women. 

According to Dr. Vincent Mutabazi, a director in the Ministry of Health, disability that starts before or at birth is called a congenital malformation which often results in long term disability that affects the family and may occur in many parts of the child. 

"There are many causes of congenital malformations and their origin. They can be external, for example the arms or legs, or it can be internal like in the lungs, intestines, heart and so on. Also, the exact cause of the issues are not well established but exposure to malforming agents like tobacco smoke or alcohol, infections or taking certain medicines can affect the development of the child,” he says.

Dr. Mutabazi also says that some malformations can be genetic and these become more common when parents are related by blood. Malformations can also be caused by giving birth at an advanced age or in mothers who have bad nutritional status and other conditions like diabetes or obesity.

He points out that while in advanced economies pre-conception screening can be done to avoid birth defects, women in countries like Rwanda that are not on that level can protect their unborn babies using other ways. 

"It’s important for expectant mothers to avoid exposure to certain medicines and be fully vaccinated during pregnancy and of course, totally abstain from harmful substances like alcohol or tobacco. Mothers should also carefully monitor what they eat; ensuring that they have a good balanced diet,” he says. 

Joyce Kirabo, a counselor at Mount Kenya University, says that it is rare to receive clients who have issues pertaining to the stress that comes with raising a child born with disabilities. She says that this can be attributed to the fact that there is still stigma attached to the unfortunate medical conditions, thus forcing most people to keep the matter private.

"African society is more comfortable putting the blame on women. If a child is born with a disability, a man is automatically not part of that equation. It is always a woman’s fault and that is why it’s really necessary to educate people and tell them that it is more important to get these children the love and support that they need instead of apportioning blame,” she says.

She advises mothers that are raising these children to begin their journey by accepting their situation; adding that they should treat the child the same way they treat others and accord them opportunities like education, health and others.

Giving birth to a disabled child is something hard to accept and raising one is an even bigger challenge. It is unfortunate that while no parent should have to see their child suffer or hurt in any way, it is expected of the parent to take it all in and be the strong shoulder that the child needs to have some semblance to a normal life.

Join a group, whether at your church or seek out family and friends when things get tough, but above all, keep the faith. The journey may be hard but it is not without rewards.

What women say

According to Denise Rwakayija, a mother of two, it takes love and undying dedication, especially in a country like Rwanda where the special needs areas are not developed, to raise a child with complications.

"A woman raising such a child has to make great sacrifices, like giving up her own cherished dreams or ambitious life goals to be able to care for the child,” she says. 

Karaoke hostess and mother of one, Carolyne Nderitu, says that if she had a child with a disability, she would "take it as a choice made for me by God.”

"I would love and raise that child like any other. My love would get me and my child through it and with time, no matter how hard, I would learn to cope and live with it,” Nderitu says. 

"If a mother gives birth to a child with a severe disability, it’s her responsibility to love and nurture that kid. I can only imagine how exhausting it must be but as a mother, you have to be brave and take on the challenge,” says Rehema Uwamahoro, a university student.

"It would be important to keep in mind that some women out there don’t even have the ability to have what I have. I personally would not have a problem raising such a kid because I would take him or her as God’s special gift,” Uwamahoro adds.

editorial@newtimes.co.rw

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WHAT IF YOUR CHILD IS BORN WITH A DISABILITY?

Obviously it’s not easy finding out that the baby you’re carrying is not normal. It brings a lot of stress and pressure to you and your family, wondering how you will manage a disabled child, and also, how that child will ever cope. However, I believe every child is a blessing from God, regardless of their health status.

Diana Ingabire, salesperson

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It’s every mother’s dream to have a bouncing, healthy and lively baby and that’s why it is very challenging when a mother finds out that the baby she is carrying is disabled. The hardest part is that feeling you get, knowing that the child is going to suffer, or feel unwelcome around others at some point.

But regardless of that, a child being disabled doesn’t change the fact that he/she is still a human being who deserves love, affection and attention. As they say, disability is not inability; you never know what that child could become in future.

Patricia Uwase, university student

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Yes it’s unfortunate, but that doesn’t take away the fact that the child is a human being. We have seen people who have reaped big in life, yet they live with disability.

This greatly proves that a child being disabled doesn’t take away his/her God given purpose in life, and that child can be extraordinary in a great way in the long run. It all depends on how you choose to handle and empower that child. I believe just like a normal kid, a disabled one can also be mentored to succeed and make the most out of life.

Josephine Tumukunde, university student

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Yes I know it’s very challenging to care for a child with a certain disability, but I think that’s what it means to be a mother. A mother is supposed to love her child no matter the condition the child is in. In my opinion, though no mother deserves to give birth to an impaired child, on the other hand, no good mother takes the life of a human being because he/she is different.

Elizabeth Uwayesu, store manager