I fight for my son’s life so other mothers won’t have to

Three years ago, Chantal Openda came face to face with every mother’s nightmare; a complex medical condition that almost took her son’s life. She tells her story

A month after her relationship ended, Chantal Openda started experiencing changes in her body. She was 23 and living with her brother. Later, tests confirmed she was pregnant. After a relatively normal pregnancy, the young mother faced a tough situation in her third trimester.

“It was during my last clinic visit at 38 weeks. The doctors became concerned during my scan because they noticed the baby’s head size was slightly larger, indicating an abnormal fluid build-up. They didn’t want to alarm me so they asked me to go through follow up tests which revealed the baby had hydrocephalus,” Chantal narrates.

Panic and confusion struck. Chantal had prepared for the reality of being a young, single mother, but not for this heavy news. She asked doctors what would happen next. “They said to me: you have to give birth first. Then we’ll know.”

Dissatisfied with the idea of leaving her baby’s condition to the unknown, Chantal started reading up. However, research did nothing to reduce her worries and with the due date so close, she decided to change hospitals.

The second hospital gave her some hope. Equipped with a neo-natal facility, the doctors seemed better placed to handle the delivery and next steps.

“The day Tayden was born was the happiest of my life. He was perfect; a full head of hair and smooth skin. You wouldn’t imagine anything was missing,” Chantal says. After confirming the diagnosis, the hospital monitored Tayden for three days. By the fourth day, it became clear that fluid was building up in his brain. They had to take him in for surgery to place a shunt in his head to regulate the fluid.

“Imagine meeting this little four-day-old human who completely steals your heart only to watch him being wheeled away into theatre, not knowing whether you will see him again. I didn’t understand why such an innocent baby had to go through so much so soon,” she says.

Mother and baby stayed in hospital a week after the surgery before being discharged. The cost of the caesarean birth and Tayden’s surgery set the family back close to Sh1 million. But they believed the worst was behind them. In that first month, Tayden had to visit a neurosurgeon every week to access his surgical head wound. He also had to see a paediatrician bi-weekly.

Although they got a clean bill of health at each visit, Chantal noticed that Tayden’s wound had some pus. He was also unusually irritable. At the final visit, she shared these concerns with the neurosurgeon but, each time, he said everything was fine. His irritability was chalked down to normal colic.

As soon as they went back home, Tayden’s fever spiked over 38 degrees and he started projectile vomiting. Chantal knew these were symptoms associated with a shunt infection. They rushed him back to hospital where he was re-admitted.

The setback

Tests confirmed that he had an infection so severe it was over the normal scale for which they prescribed daily antibiotics. He was being injected about four times a day. After two weeks, the infection hadn’t cleared. It was recommended that the shunt be removed.

The hospital asked for a down payment of Sh500,000. Meanwhile, their bill for the two weeks had accumulated to almost Sh300,000. All Chantal had in her account was Sh30,000. She called Tayden’s father who worked in Mombasa at the time and told him what was happening. That was the last time they heard from him.

“He tried to support me during the pregnancy. He came to see the baby when he was born. He took loans to offset the first bill. He sent money for the deposit for our second admission. I generally think he did his best. But I guess it became too much. He completely cut off communication with me or anyone from my family. We never heard from him after that day,” Chantal says.

With Tayden in critical condition, Chantal pleaded their case at the hospital’s credit office. They agreed to take what she had and to operate on him while she tried to raise more money. She applied for a bank loan that was immediately declined. Her friends and family set up a fundraising committee and raised almost a million shillings. But a month later, the bill stood at Sh2.3 million. They decided that the best course of action was to get a referral and move to another hospital.

“In the midst of all this, my mum who has been my rock throughout was going crazy researching on the internet. She found a hospital in Mbale, Eastern Uganda named CURE; a non-profit hospital that entirely specialises in neurosurgical surgeries – especially spina bifida and hydrocephalus cases in children. She called them and explained our case. They said as long as we could get there, they would take care of the rest. It was a miracle from God.”

No option

After Tayden was confirmed stable and they were discharged, Chantal and her mother began the journey to Mbale. It was a long exhausting commute involving a plane to Eldoret, a car to the Busia border and a 30-kilometre journey on two motorcycles to the hospital. They got there in the middle of the night.

“Once we settled in, the doctors accessed Tayden. We had our medical reports from the previous hospital but they insisted on conducting their own review. We were shocked to discover that the infection that we’d been told was gone had now festered. According to the surgeon, it was as if his brain was covered in pus. Surgery wasn’t an option for Tayden,” Chantal says.

Angry and confused at first, Chantal fought the surgeon’s words. “I thought we were there to get him a new shunt and put the ordeal behind us. His exact words to me were: I would rather you hate me for letting your son’s head size grow (because of the fluid build-up) than for killing him.” Eventually, Chantal says, she surrendered to the wisdom of his words, and to a higher power.

In the following four months, they travelled between Nairobi and Mbale as the doctors treated Tayden’s infection. Treatment involved draining the fluid manually and then injecting antibiotics into his head.

“By his fourth month of life, Tayden had had five head procedures. As we prepared for his sixth – the surgery to insert a new shunt – I remember feeling completely drained. I had nothing left. I had done everything I could and I just sat there, praying and begging for my son’s life.”

The morning after the final surgery, her prayers were answered. Tayden was discharged from ICU in stable condition. They monitored him for a few days; the shunt was working well so they were discharged.

Moving on

“It’s been two years since the surgery. Aside from his delayed milestones for which he is undergoing occupational therapy, he has had no issues related to the shunt. He has never gotten sick except for flu one time,” Chantal says.

Because of the condition, Tayden finally got to support his head and sit up on his own when he turned one. Openda decided to start him on aggressive therapy three months ago.

“The left side of his body wasn’t quite as active and doctors recommended five days a week. It is painful for him but we can see incredible progress. Doctors say with continuous therapy he will get there.”

Determined to give a voice to hydrocephalus. She teamed up with another mother, Rosalia, and founded the Deserve Foundation.

Although she wouldn’t wish this experience on anyone, Chantal believes it had to happen to her for a bigger purpose.

“I know God wants to use me for something great and I say use me. I’ve always wanted to help people and all I pray for is for his wisdom. We need a cure for hydrocephalus, and more so, we need a solution to the state of healthcare in Kenya –from quality of care to the financial aspect.”