Doctors said Tiwa Jonah would not live. Today, he is 8.
Featured Patient Stories| 24 October 2023
Expectant moms daydream about rocking their soft, sweet-smelling bundles after birth. Mary from Uganda certainly did. And she was ecstatic to one day hold not one but two babies in her arms—twins! But when an ultrasound six months into her pregnancy revealed devastating news, her faith would be tested in unimaginable ways.
The radiographer’s words haunted her. No chance of survival. Hydrocephalus.
Hydrocephalus is a serious condition in which a blockage causes cerebrospinal fluid (CSF) to accumulate, causing pressure on the brain and creating an enlarged head. If left untreated, it can be fatal.
Mary turned to God with some tough questions. “I asked God so many questions. Why me? Why me? In my mind, my child would have a big head, and I did not accept it,” she says.
Facing Delivery Day
Disheartened by the thought of potentially losing both her babies, Mary returned to her doctor, who advised her that a C-section would best minimize the risk of complications. The doctor also referred her to CURE Uganda, one of Africa’s leading pediatric hospitals for brain surgery and the treatment of neurological conditions.
At CURE Uganda, a neurologist strongly advised Mary to schedule a C-section and return to the hospital immediately after giving birth so they could promptly treat the child with hydrocephalus.
Although terrified, Mary leaned on her husband’s dedication to God. She remembers him saying, “You must take heart and thank the Lord. Let’s allow His will to be done.”
Unfortunately, when it came time for Mary to give birth, no doctor was available to do the recommended C-section. So on February 23, 2015, just as the radiographer predicted, Mary gave birth to two boys—one stillborn and one with life-threatening hydrocephalus. She named her surviving son Tiwa Jonah.
Light Dispels Darkness
When Mary saw Tiwa Jonah for the first time, she felt relieved because his head was not big. But fear overtook her again when she brought him to CURE and a doctor found a sac in Tiwa Jonah’s back—he had 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 the condition get hydrocephalus. But spina bifida is always treated first.
So, at three days old, Tiwa Jonah underwent a lifesaving operation where the highly skilled surgeons at CURE removed the fluid-filled sac on his back. Four months later, they drained the excess fluid from his brain.
As little Tiwa Jonah fought for his life under the excellent care of CURE Uganda’s medical staff, the hospital’s ministry team provided the spiritual support and counseling a fearful Mary desperately needed.
“The first medication CURE administers is the Word of God. And that’s the best thing a mother really needs to hear,” she explains.
The staff at CURE Uganda nurtured Mary and the rest of the parents in caring for and loving their children, disabilities and all. Because of CURE, she became an advocate for mothers struggling to raise children with hydrocephalus and spina bifida. It’s her way of giving back.
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.”
Serving as a Testimony to the World
Tiwa Jonah is now eight years old. As part of CURE’s commitment to comprehensive and ongoing care for our patients, Tiwa Jonah has routine checkups where doctors closely monitor his progress and the staff keeps Mary’s spirit uplifted and hopeful.
Mary is thankful that CURE gave Tiwa Jonah a chance at life. “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.”
Still, some family and community members don’t see any value in a child with a disability. “There are those who called my son a ‘thing,’” Mary says. “Someone even told me to dump him in the water and forget about him.”
But 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 to the world that spina bifida and hydrocephalus is a disability, but it’s not an inability.”
The road to healing for Tiwa Jonah will be challenging. That’s why Mary is grateful for the mothers she’s befriended at CURE Uganda. As an advocate, Mary makes sure those mothers are educated and encouraged. 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 for Tiwa Jonah. She says her son wants to be a doctor, and he tells her, “You will be the nurse.”
We are grateful for the support of generous donors who make it possible for CURE to provide urgently needed medical and ministry care to children like Tiwah Jonah.
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