Road to Hope and Healing

A Ugandan mother and son are an inspiring example of endurance, joy, and advocacy amid tough challenges

 

 

Around the world, people believe that children are a blessing from God. So when Mary, a Ugandan Christian woman, learned that she was pregnant with twin boys, she could hardly contain her joy.

However, six months later, her joy turned into fear. Mary increasingly got sick to the point where she was in and out of the hospital. Her doctor advised her to get an ultrasound. The result was not good. The radiographer told Mary that one of the twins would not survive childbirth and the other baby had water in his head (hydrocephalus).

Hydrocephalus is a condition in which excess cerebrospinal fluid (CSF) accumulates in a child’s brain. If left untreated, it can be fatal. But with appropriate early intervention, serious complications can be prevented, enabling children to lead normal lives with few limitations.

Devastated by the news, Mary returned  to her doctor who advised her that a C-section delivery would be best to minimize the risk of losing one of the babies. The doctor also referred her to CURE Children’s Hospital of Uganda (CURE Uganda). At CURE Uganda, a neurologist strongly advised Mary to return to the hospital immediately after giving birth so they could promptly treat the child with hydrocephalus. But while at the hospital, Mary saw a child with a big head and instinctively imagined the worst for one of her babies.

 

 

Questions and Answers

 

“I asked God so many questions. Why me? Why me? It disorganized me,” says Mary. “In my mind, he would be a child with a big head, and I did not accept it.”

 

Thankfully, her husband had a faith-based perspective. Mary remembers him saying, “You must take heart and thank the Lord. Let’s allow His will to be done.”

When it came time for Mary to give birth, unfortunately, there was no doctor available to do the C-section procedure. So on February 23, 2015, just as the radiographer diagnosed, Mary gave birth to two boys, one who was stillborn and one with life-threatening hydrocephalus. She named the boy who survived Tiwa Jonah.

When Mary saw Tiwa Jonah for the first time, she felt relieved because the baby’s head was not big. But fear overtook her again when a CURE doctor, after examining Tiwa Jonah thoroughly to determine the cause of his condition, found an opening or sac in his back (spina bifida).

Spina bifida is a congenital condition that occurs when the spine and the spinal cord do not develop completely. Many babies born with spina bifida get hydrocephalus. But spina bifida is always treated first.

So, at three days old, Tiwa Jonah underwent an operation in which the doctors removed the fluid-filled sac on his back and closed an opening to his spinal column. Four months later, Tiwa Jonah was back at the operating table where a CURE surgeon drained the excess fluid from his brain.

 

Light Dispels Darkness

 

Since then, Tiwa Jonah – now seven years old – has had several routine checkups at CURE Uganda where doctors closely monitor his progress and the staff keeps Mary’s spirit strong and hopeful as she diligently takes care of her son.

 

Children with hydrocephalus and spina bifida need ongoing treatment and care. To minimize and manage potential complications, it’s important that caregivers are trained to assist patients in performing their daily activities of living. Among other things, for Mary, it means learning how to manage Tiwa Jonah’s bladder and bowel dysfunction.

Mary knows hers is a daunting job, but she says her strength comes from God and the support of CURE Uganda. And a big blessing, says Mary, is that Tiwa Jonah is developing a good sense of humor.

“My favorite thing about Tiwa Jonah is that he brings me joy every day,” Mary says. “When I am stressed, my boy always cracks a joke to see that mommy is smiling and happy.”

 

And yet, some family members and the community at large don’t see any value in a child with a disability. “There are those who called my son a ‘thing,’ Mary shares. “Someone even told me to dump him in the water and forget about him.”

Mary says she can understand why people react negatively. “Nobody would really want to raise a child in Tiwa Jonah’s condition, but I thank God that He has given me the opportunity to be here for him.” Mary says meditating on Jeremiah 1:5 (“Before I formed you in the womb I knew you, and before you were born I consecrated you; I appointed you a prophet to the nations.”) keeps her heart focused on God’s plan and not on people’s opinions.

“I want Tiwa Jonah to grow up and become a good person in the future,” Mary adds. “Children like him will be a testimony unto the world that spina bifida and hydrocephalus is a disability, but it’s not an inability.”

 

Making a Difference

 

Mary says she is grateful for all the staff at CURE Uganda who “nurtured me and the rest of the parents on how to take care of our children and how to love them.” Mary recalls how confused and fearful she was in the beginning, but because of CURE Uganda, she became an advocate for mothers struggling to raise children with hydrocephalus and spina bifida.

She explains, “Without CURE and the generous support of donors, we would be living a very miserable life. With no proper treatment and medication, we wouldn’t know what to do. We would not fit in the community.”

The spiritual support is just as valuable, Mary adds. “The first medication CURE administers is the word of God. And that’s the best thing a mother really needs to hear.”

For Tiwa Jonah, the road to healing is not going to be easy. That’s why Mary is grateful for the support she receives from the mothers that she met at CURE Uganda who are going through a similar journey. Mary remembers how scared and confused she was when she found out about Tiwa Jonah’s condition, and that’s why she has made it her mission to educate and encourage other mothers. She tells them, “You never know, through your child, God might be preparing you for something bigger and good for your family.”

That’s what Mary believes for herself and Tiwa Jonah. Already, she says her son wants to be a doctor and that he tells her, “You will be the nurse.”

 

Help end the wait for a child needing neurosurgical care by clicking here.

Learn more about how CURE Uganda cares for children with hydrocephalus by clicking here.