BABY MERCY MUTHONI Racing against time TO GET HER HEARING

Two-and-a-half-year-old Mercy Muthoni has known nothing but silence in her young life. While many of her contemporaries are reveling in the joy of discovering the world, she is struggling to make out even the simplest of sounds. Mercy has the chance of a lifetime to get her hearing, but her parents need to raise Kshs 2.5 million before she turns three to pay for a cochlear implant. Her parents, Irene Nyawira and Robert Githinji, shared with WANGARI MWANGI about their daughter’s battle with loss of hearing and the hope of restoring it. 

 When I stepped into Irene and Robert Githinji’s home, their daughter, Mercy Muthoni, came running to me ready to strike a conversation, or so I thought. Like many two-year-olds, she has a lot to say but when she opens her mouth, her shaky and incomprehensible mumbles betray that this is only a desire. She is unable to express herself.

In the absence of her strong and bulky pair of brown hearing aids, Mercy’s world is just but a reel of voiceless scenes. For the last seven months, the lobe shaped brown aids have been her link to sound from silence.

“Without them (the hearing aids) I am not sure she can hear what I say. She will not budge unless you shout or bang the door. I still talk to her anyway,” says Irene as we settle down for the interview.

The genesis…

Irene and Robert, started their nine-month pregnancy journey on a dramatic footing. In her first trimester, Irene was bleeding due to hormonal imbalance, which threatened to bring her pregnancy to a stop. It took a prescription from a gynaecologist to halt the bleeding. At seven months, Irene was back to spotting accompanied by pain and cramping.

“I was immediately put on absolute bed rest at Family Health Clinic in Nairobi West. After further examination and ultra sounds, the doctor attending me said I was due for delivery any moment but because they did not have a facility for preterm babies was referred to Kenyatta National Hospital (KNH),” she says.

Just like the doctors had told her, on the morning of August 4, 2012, she gave birth to a baby girl. Both Irene and Robert were ushered into the world of parenting ill equipped. The baby weighed 1.4 kgs and they would not set eyes on her until six hours after delivery in the newborn unit where she was lying in the incubator. Irene was started on a new routine of expressing milk after every three hours that was fed to her baby using gastro nasal tubes.

Three days after birth, the baby developed severe infant jaundice (a yellow discolouration in new born baby’s skin and eyes). Due to her premature birth, the baby’s liver was not mature enough to get rid of the biliburin in her bloodstream. This by-product of broken down red blood cells caused the baby’s skin and eyes to turn yellow. For it to clear up, she needed to be taken through phototherapy sessions.

“The newborn unit at KNH was crammed at the time and the doctors were on strike. Our next available option was to transfer her to Nairobi Hospital but we did not have the amount of money required to place a deposit. We waited for several days to secure an incubator with phototherapy equipment. In the meantime, the baby was put on drips and intravenous drugs to contain the jaundice,” explains Irene.

Even with therapy, Irene says that her baby’s condition worsened. Due to the high levels of biliburin in Mercy’s blood, a blood exchange transfusion was recommended to save her life and also to prevent brain damage. The baby’s weight dropped to 1.2 kgs and to make matters worse, she became anaemic.

“After the blood transfusion, everything changed. She started to gain weight and her jaundice finally cleared. By the time of discharge from hospital, she weighed 1.9 kgs,” recalls Irene adding that they named her Mercy because God had been merciful to her.

Barely a week after discharge, the jaundice came knocking again prompting her admission at the Mariakani Hospital. This second attack lasted a week then cleared and Mercy was back home. This marked the end of her brief battle with jaundice.

Enter the world of silence…

What Irene and Robert did not know was that the two bouts of jaundice had affected their daughter’s hearing. This side effect remained undetected for some time as Mercy marked various milestones without hitches and with good reports from her postnatal clinics. Her parents had no hint anything was untoward and, therefore, had nothing to worry about. She could sit up without support at six months and crawled and learnt to walk albeit with a little totter at the right time. But when she failed to utter her first words at one year, the couple got concerned.

“Most of her peers had already made progress with their speech but Mercy could not utter a single word. The thought of taking her to an Ear, Nose and Throat (ENT) specialist crossed my mind but my mother urged me to give her more time explaining that some babies took longer than others to develop speech,” Irene recalls.

Mercy had still not uttered a word by the time she was one and a half. If anything, she became easily irritable, especially when she went out to play with other children because they could not understand her. Her parents also found it hard to follow her cues whenever she wanted something and when her demands were not met she would get agitated and cry.

“We relied on guess work to understand what she wanted as she would cry pointing at objects or directions that gave some clues. My starting point was always checking her diaper, followed by a check to see if she had a fever. If these failed to give me a clue, I would give her a drink, food or a toy. If that was not what she wanted, she would throw it away and the drama would continue until you got it right,” says Irene.

Irene finally took Mercy to a pediatrician when she turned 20 months and she was referred to a child development specialist for further tests. Initial tests ruled out Autism, which is also known to cause delayed speech. A hearing test revealed that Mercy’s cochlear had been severely damaged by jaundice. She had lost 80 per cent of her hearing ability in both ears.

“That hearing test at Danica Hearing Centre really dampened our spirits. As it turned out, Mercy had severe-to-profound hearing loss. The specialist told us the hair cells in the inner ear (cochlear) were damaged, making it difficult to transmit sound to the brain for interpretation. What made us even more sad was the delay in this diagnosis which, with proper testing, the specialist reckoned should have been diagnosed by the time she was six months old,” Irene explains.

Mercy’s inability to hear greatly interfered with her capacity to talk thus confining her to a world of silence. Irene explains that the lack of exposure to sound meant Mercy could not capture different words hence could not repeat them in order to say them in the form of talking. The reprieve was that Mercy still had a chance to salvage her hearing by undergoing a cochlear implant before her third birthday.

Efforts to salvage her hearing…

After the diagnosis all attention moved to doing more research to find the best ways of securing their child’s hearing. The couple took a loan of Ksh 110,000, which they used to buy the child some hearing aids. Although it was difficult adjusting to them at first, it made a big difference when she got used to them – but this is only a temporary measure. The couple also signed her up for a weekly speech therapy at the Agha Khan hospital which costs Ksh 4,500 per session.

“Her progress was immediately noticeable after she started speech therapy. Within a short time she was able to relate objects to their sounds, for example, moo to a cow. As helpful as these therapy sessions were we could no longer afford them and in September last year she dropped out. She is currently being helped by an audiologist using my husband’s medical card to pay half of his charges while we pay the balance in cash,” says Irene.

The couple got a partial scholarship and has enrolled their daughter at Jabali Kindergarten to help her learn interaction skills. This school has many children with various learning difficulties so Mercy is not alone. She has improved very much in terms of expressing her needs as a result of the care she is receiving at Jabali.

The other focus now on the couple’s mind is to have their daughter get a cochlear implant before she turns three, and the clock is ticking. The procedure entails the insertion of an electronic medical device that amplifies sound signals before they are transmitted to the brain. The couple says they have settled on Fortis Hospital in India, which is the cheapest option they have found.

“Our main impediment to giving our daughter a chance to hear and therefore talk has been raising enough funds for the operation. Out of the Ksh 2.5 million that is required, we have only managed Ksh 500, 000.We have tried looking for organisations and donors to help fund the remaining balance and we remain hopeful help will come before she turns three in August this year,” says Robert.

All parents want the best for their children, and the couple is no different. All they want is for their daughter to be able to hear, and thus talk.

“We have set up a Facebook page, www.facebook.com/BabyMercyMuthoniTreatment, and a Paybill number 891300, Account number 3177, in an effort to raise enough money for the operation. We hope for nothing less than our daughter getting treatment before her third birthday,” concludes Robert as he playfully tosses a ball to his daughter.

wangari@parents.co.ke