I want them to hear their mama’s voice

When Nancy Muriuki became a mum to twin girls, it was the happiest she had ever been. Yes, they had been born premature, and spent the first two months of their lives in hospital, but they had caught on fast and were now seemingly thriving.

And as they grew from helpless infants to precocious toddlers, her heart welled with gratitude for the abounding gift that was motherhood.

Health-wise, they seemed to be in tip-top shape. Their milestones were a tad delayed, but who said all babies were supposed to stick to a script?

“They first sat unsupported at eight months – something kids do at three or four months of age. They crawled at 15 months. And walked way later. That didn’t worry me,” she says.

What Nancy did not realise was that her babies – Kenzi Njeri and Kendi Wanjiru – were deaf. She only found out when they were a year and half old. It was Nancy’s sister, while babysitting the girls, who took note of the anomaly.

“I remember her saying that she was playing music but the girls did not seem to respond to it. I shrugged it off and told her the girls were OK.”

But her antenna had been raised, and as days went by, Nancy gave the girls a laser-sharp focus; keen to pick out anything. That’s when she noticed something.

“The twins played about. They made noises. They smiled. They laughed. But they did not respond to my voice – or any other sound. I told my husband that we should take them for hearing tests,” she says.

Like Nancy, her husband Patrick Kirimi hadn’t noticed anything unusual.

At the ENT specialist, the couple was referred to an audiologist. Tests revealed that the girls had extreme loss of hearing. So extremeit was that hearing aids failed to work on them.

The audiologist told the couple that the girls would need a cochlea implant. A cochlea implant is an artificial replacement that bypasses the dysfunctional cochlea nerve and hair cells in the ear.

The cost of an implant, for one ear, stands at Sh2.7 million and the Kirimis need Sh10. 8 million for each of the girls.

The worried couple would go home, digesting this information.

 “What really troubled us is that the doctor advised us to have it done before the girls turned four. We have just under 10 months,” Nancy says.

Without the implant, the part of the brain that interprets sound signals will either be taken over by other senses like touch, sight and smell or will permanently go dormant.

Nancy believes that the twins were not born deaf even though her daughters’ audiologist says that it is highly likely that the girls were born hard of hearing.

Today, during the interview, Kenzi and Kendi, happy little girls, swarm around their mother with a lively energy that permeates the whole house. They are oblivious of their parents’ inner turmoil.

Without the cochlea implants, Nancy and Patrick will have to make peace with the fact that the twins will be deaf forever. That means they will have to go to sign language school.

“I know that sign language is an option. But I do not want to stop trying. Because I don’t want the girls, when older, to ask me why, if there was an option of salvaging their hearing, we didn’t take it,” Nancy says, with Patrick along in agreement.

The couple hopes to raise at least Sh6 million to enable each girl to have an implant in one ear.

If Kenzi and Kendi get the implants, they will embark on a long journey that will likely take years of speech therapy, training and learning to speak.

Communication is an everyday struggle for the young girls, often getting frustrated when their message is not received.

“Our oldest, is seven. She can hear and speak properly. But the babies will swing hands, shake their heads, make angry faces, mime animatedly, and do all they can to communicate their feelings. We do our best to be in tune with them,” says Nancy.

What causes deafness in babies?

According to the World Health Organisation (WHO), causes of hearing loss among children before they are born include genetic factors or infections that occur when they are in the uterus. These include rubella and cytomegalovirus.

During birth, a baby could develop deafness if they don’t get enough oxygen at the time of birth (asphyxia). It can also be brought on by severe jaundice in the neonatal period, low birth weight and illnesses that may require hospitalization at birth.

During childhood, hearing loss might occur due to chronic ear infections (Otis media), collection of fluid in the ear, or infections such as meningitis, lyme disease and chicken pox.

In adults, smoking, chronic illnesses, age-related sensorineaural degeneration, infections of the central nervous system, or accidents leading to brain injuries may all cause loss of hearing.

Dr Dan Wanyoike, a Nairobi based audiologist, and Kenzi’s and Kendi’s doctor says that cochlea implants for children born deaf are best done within the first 6 years of life. But usually, the sooner they are done, the better.

“Past age seven, it is almost futile. A child talks what they hear. Without hearing, they therefore won’t talk,” Dr Wanyoike says.