Born different, branded cursed, but saved by surgery and grandmother's love

 

A team of surgeons led by Dr Odhiambo Bati during a cleft lip surgery at Dreamland Mission Hospital in Kimilili, Bungoma County. [Patrick Vidija, Standard]

"I was angry and furious. I raised my voice in frustration, asking doctors why they had cut my grandchild. At first, I thought that as they were checking whether his mother was due, they had accidentally cut him."

These are the words of Violet Asangire Osangir as she narrates the pain and struggle of caring for her grandchild born with a cleft lip.

She takes a deep breath. Silence fills the air for a few seconds before she gathers herself and continues.

"The doctors looked at me with empathy. They took a white piece of cloth and wiped the area. I was shocked by what I saw," she says, pausing before breaking into sobs. "It took me time to understand that it was a birth deformity because, in my life, I had never seen such a thing."

I had been pursuing an interview with Ms Osangir for some time and, through Smile Train, I finally caught up with her at Dreamland Mission Hospital in Kimilili, Bungoma County.

She sits under a tree, quietly saying a prayer for her two-and-a-half-year-old grandson, Lewis Osangir, who is in the operating theatre.

As a team of doctors works to restore the child's appearance, Ms Osangir reflects on a journey that began in Teso, Busia County, in search of medical help and hope that her grandson would one day live a normal life.

"This is the third surgery being performed on my grandson. The first one was conducted at a hospital in Eldoret when he was only 10 months old. It cost us more than Sh280,000. A year later, we did another corrective surgery, but the results were not what we expected," she says.

After three days of waiting for surgery at another facility, the procedure could not proceed because the hospital lacked the necessary equipment.

"In April, we were referred to Dreamland and since then it has been a journey. Although the hospital caters for all our expenses, including transport and meals, the deformity has caused significant trauma to our family," she says.

The emotional burden was immense.

READ: Where cleft-lip birth defects are a ‘bad omen’

"My grandson became a laughing stock. His grandfather even wanted him to die because he was convinced the child was a bad omen. He became angry when we named the boy after him and refused to associate with him."

Laughing stock

Ms Osangir says her son had a relationship with a teenage girl, a situation that eventually landed him on the wrong side of the law.

"She was in Class Eight. I offered to take care of her until she gave birth. Unfortunately, the baby was born with a deformity. We became a laughing stock because people believed the girl was not mature enough to have a child," she recalls.

"It was shameful. I struggled to take care of him. I used to cover him so people would not laugh at him. But today I am happy for what God has done. I am here to testify that indeed God answers prayers because the little boy is already handsome and doing very well. I know after today's surgery he will be completely healed."

At the same facility, I meet Eunice Nanjala Simiyu, a widow from Chwele.

Ms Nanjala has two grandchildren living with clefts — one aged 11 years and the other four years old.

Her eldest grandchild, Esther, is recovering in the ward after undergoing her third corrective surgery.

"I am a product of a broken marriage. My late husband separated from me in 1992 when I gave birth to a son with a cleft. Not knowing it was a medical condition, he said the child was cursed and would bring bad luck to the family," she recalls.

Eunice Nanjala Simiyu is a grandmother taking care of two grandchildren born with cleft lips. [Patrick Vidija, Standard]

She says the experience left her isolated and vulnerable.

"When I got married, both my parents-in-law had already passed away, so I had no one to defend me," she says.

"It took the intervention of my husband's uncles to convince him that the condition ran in the family."

After months of struggle and mediation involving local chiefs and community elders, she was eventually allowed back into her matrimonial home.

More than three decades later, the painful memories remain fresh.

"When my son later had a child with the same condition, I was not surprised. I encouraged him to stay strong and seek help. That is why Esther is here today undergoing her third surgery."

ALSO READ: As world marks World Cleft Day many still in line

She says her daughter-in-law could not cope with the emotional burden.

"She returned to her family after giving birth to her fourth child and never came back. Esther is now 11 years old and Enos is four."

Nanjala says the support provided by Dreamland Mission Hospital through Smile Train has eased a burden she could never have managed alone.

"I am a widow and old age is catching up with me. How would I have managed? All the bills are catered for by the hospital. It is encouraging to know that good people still exist in this world."

A cleft occurs when certain parts of the face and mouth fail to fuse properly during fetal development. The condition can affect the lip, the roof of the mouth (palate), or both.

According to Smile Train, one in every 700 babies worldwide is born with a cleft lip and/or palate.

The condition can cause difficulties with feeding, breathing, hearing and speaking. Without treatment, many affected children may struggle to eat properly, attend school, make friends or secure employment later in life.

While some endure shame, stigma and isolation, others face years of pain and emotional distress.

Risk Factors

Dr Odhiambo Bati, a cleft surgeon, says the condition remains one of the most common birth defects encountered in clinical practice.

Although the exact causes remain unclear, he says genetics and environmental factors may play a role.

"At this facility alone, we have treated five children from the same family. Sometimes a lack of important nutrients during pregnancy can contribute to complications, and clefts are among them," says Dr Bati.

ALSO READ: Why cleft lip surgery is best done early and by specialists

He adds that alcohol use, smoking, maternal illnesses, infections, and certain medications, including some antidepressants and anti-epileptic drugs, may also increase risk.

"In other cases, antidepressants and anti-epileptics may be contributing factors."

Dr Odhiambo Bati is a cleft lip surgeon. [Patrick Vidija, Standard]

Dr Bati says misconceptions surrounding clefts remain widespread in western Kenya.

"Many people still believe such deformities are the result of witchcraft or bad omens. In many cases, these beliefs have broken families apart."

As a result, he says, many fathers abandon their families, leaving grandmothers to care for affected children.

Despite the challenges, he emphasises that clefts can be corrected, allowing children to live healthy and productive lives.

"The encouraging thing is that these deformities can be repaired and patients can go on to live normal lives."

According to Dr Bati, approximately 10 out of every 1,000 live births are affected, particularly among low socio-economic populations.

He explains that surgeons use the "rule of tens" before performing cleft lip surgery.

"A child should be at least 10 weeks old, weigh at least 3.5 kilograms and have a haemoglobin level of 10 before surgery is considered."

Repairing the cleft lip is often the first step because it plays a critical role in feeding.

"We do not simply stitch the lip. We carefully dissect and repair three separate layers. We raise flaps and tissues to restore a normal lip while ensuring symmetry, including reconstruction of the nose."

Cleft palate repair is usually performed later to allow the mouth and teeth to develop adequately.

"If surgery is done too early, there is a risk of interfering with tooth development. That is why palate repair is often recommended when the mouth has had sufficient time to grow," says Dr Bati.