On May 24,2019, I casually bought a pregnancy test at Walmart after my husband joked, I might be pregnant to my surprise it showed a faint positive even though we already had three young boys. I felt anxious but excited about adding a fourth baby to our lively household. At the first ultrasounds seeing the tiny baby turned my worry into joy and curiosity about who they would be.
The excitement was short-lived, sadly. During my anatomy scan, the technician found fluid in the baby’s ventricles. The baby was diagnosed with mild ventriculomegaly, and I was devastatedI was overwhelmed with worry and fear, constantly searching for answers and losing sleep. The uncertainty followed me for the rest of my pregnancy.
Malaika was born healthy but soon showed brain problem brain problem and very small head size. Later tests confirmed he had moderate to severe hearing loss.
His doctor still could not find a cause for his arising symptoms, so I ran to the internet again. Google, support groups, anything I could to try and find a cause for what was going on with my little boy. After coming up empty-handed from hours of google searches, I reached out to a local support group for ventriculomegaly. One of the members asked if he had been tested for Cytomegalovirus/CMV and said his health issue fit. I was clueless and had no idea what that was, but I reached out to Malakai’s pediatrician the following day. She was hesitant and didn’t feel it was CMV, but because we were at a dead-end, she agreed testing him wouldn’t hurt. A week later, she got the results back, and sure enough, he tested positive for CMV.
Cytomegalovirus is a common virus that acts like a common cold in adults and children, but when a pregnant woman contacts CMV and passes it to her unborn baby, it can be life-altering and, in some cases, deadly. In Malakai’s case, it was affecting his hearing and brain. I was beyond devastated. I had spent countless hours reading on CMV, and all the harm it could do from attacking a baby’s hearing, vision, brain, and nearly all other organs. I saw there was no cure or vaccine, and he was over the age to receive any medication that would help lessen his symptoms. I felt like I was at a dead-end, barely touching the surface of what was going on with him. I worried for my son’s life, worried about him dying. I worried there would be new problems we hadn’t yet discovered. All the horrific possibilities because I contacted CMV during my pregnancy and passed it to him.
Malakai was sent to many specialists, and doctors confirmed he was born with congenital CMV. He started therapies and antiviral treatment to support his brain growth and quality of life.
At 6 months old, he received his hearing aids, and initially, they helped. He was responding to sounds he had never responded to but around the time he turned 8 months, his speech therapist, audiologist, and I all noticed his hearing seemed to be declining again. That meant our next step would be to test his hearing. I recalled the struggle he went through the first few times we had his hearing tested.
As soon as his ABR was finished, I got the results. He was completely deaf in his left ear, and profoundly deaf in the right ear. I wasn’t as heartbroken this time, because I had seen a steady decline in his response to sound with his aids. I knew in my heart this was coming. If anything, I was excited for him. With cochlear implants, he’d hear without distortion. He’d have a better chance at learning how to talk coherently because his hearing would be virtually perfect. When his team of doctors went in to talk to the cochlear implant committee about Malakai’s case, he was immediately approved for bilateral cochlear implants. On December 7, 2020, he went in for surgery to implant the receiver. The surgery lasted a total of 6 hours with little to no complications. He will be activated on December 22, 2020.
I felt guilty and overwhelmed after my baby got CMV, but I chose to stay positive and fight for him. I focused on helping him grow raising awareness about CMV.
Malaika life now included daily medication therapies and frequent doctor visits, but he keeps proving how strong and resilient he is. Being his mother has made me stronger me to fight for all my children and to focus on the positive moments despite challenges
