Our family consists of my husband, Yoav, and our two daughters, Maya and Leila. Our youngest daughter, Leila, was born with congenital cytomegalovirus (cCMV) and has unilateral hearing loss as a result.
Our beautiful girl was born without complications on a wonderful February day in 2014. The only niggle was that she failed her newborn hearing test a couple of hours after birth. “That’s not uncommon”, said the midwife, “she probably just has water in her ear from the water birth.” We were sent for a further test the following week, which again, she failed in her right ear. “She probably still has some water sitting there”, they said… but this time they referred us elsewhere again for more in-depth tests and a consultation.
After several hours in a soundproof room, the consultant broke the news that Leila did indeed have moderate to severe hearing loss in the mid to high frequencies in her right ear. The cause at that point was unknown but further tests would be carried out on her urine and blood to see if they could determine the cause. Several possible reasons were given and the consultant began to talk in percentages about the likelihood of each. She then mentioned congenital cytomegalovirus and told us not to ‘Google it’ under any circumstances.
Obediently, we waited, and a couple of days later I received a call from the Centre. The consultant regretted that Leila’s tests had returned positive for CMV – the virus was the cause of her hearing loss by irreparably damaging the hairs in the cochlear region. What we quickly became aware of was the plethora of other disabilities that can be caused by cCMV – including cerebral palsy, seizures, ADHD, autism, developmental differences and learning delays or visual impairment to name a few.
From there began a long road of hospital visits and a leap into the unknown. We agreed to treat Leila with a 6 month brutal course of valgancyclovir, a retroviral drug used to suppress the viral load of the virus with the hope that her hearing loss would not deteriorate and no other further damage would be done. Thankfully, she tolerated the regimen well and the weekly, then monthly, blood tests showed her viral loads were dropping rapidly. At the tender age of 6 weeks, Leila underwent an MRI scan. I think that was the first moment that this diagnosis really hit me. The doctors were checking for brain abnormalities and calcifications which can be typical of CMV. Seeing my little baby swaddled in what looked like a glass coffin was heart-rending. Thank G-d, Leila had only very minor alterations in her brain structure and we breathed a sigh of relief.
Leila is now a bubbly and bright 3 year old who has been engaged in regular physio, speech therapy, eye, ear tests and neurological development consultations up to this day. Other than her hearing aid, which she wears proudly, as yet, she displays no other obvious symptoms of cCMV and has caught up to her peers beautifully. We feel so fortunate that Leila has only been mildly affected – being part of online CMV parent communities made us realise just how many people have been touched by this virus – many of whom have suffered miscarriages or lost babies and children at young ages, or are facing far greater challenges than ours on a daily basis. The one thing we all seem to have in common? None of us had heard of CMV before…
A common feeling among mothers of CMV children is of guilt that their unborn child has been affected by a virus that we unwittingly contracted during pregnancy and passed on. There are preventative steps that can be taken to prevent the transfer of the virus, but knowledge and awareness is key. We all know there are many things to avoid during pregnancy, certain foods, alcohol, nicotine… why shouldn’t we be taught that sharing your toddler’s utensils or cup, or kissing them on the lips, could have far-reaching consequences? It is not scaremongering to provide information. Current research suggests that the window of efficacy is small with the treatment of CMV by medicine – it must be started by 4 weeks old. We were just on the cusp of that limit because of the waiting time between the different hearing tests and the time a urine test was finally taken. What took so long? CMV Action is on the case in this country and needs support.
Thank you for reading.