Julia was born just shy of 41 weeks’ gestation after an uncomplicated, easy pregnancy. She was perfectly healthy and beautiful in every way.
Before leaving the hospital, Julia received the standard newborn hearing screening, which she passed on her left ear and referred — they won’t say “failed” — on her right. The nursing staff assured my husband and me that their machine was touchy and that this happens all the time.
The physician that rounded at the hospital when we were there was on the board of the American Academy of Pediatrics. He told us the odds of having a baby with hearing loss were minimal. We were told to have the test again one week later, which yielded a second referred result on Julia’s right ear. At this time, we were told by our primary doctor to see the audiologist. He informed us that having hearing loss in one ear is uncommon and in his 10 years of practice he never had a patient with deafness in just one ear.
After two visits with the audiologist and a referral to our local (non-pediatric) ear, nose and throat (ENT) specialist, we decided as a family to get a referral to audiology at Children’s Hospitals and Clinics of Minnesota’s Minneapolis campus. At this point we had heard every excuse as to why she wasn’t passing tests; faulty equipment, tiny ear canals, etc.
At 2 months old, Julia had an auditory brainstem response (ABR), which showed her to be profoundly deaf in the right ear with normal hearing in the left. Talk about a void in the pit of your stomach; I couldn’t breathe. The room began to spin, and I got tunnel vision. I started crying, like sobbing crying. I couldn’t believe she was deaf in one ear.
This couldn’t be happening to us. We did everything right.
The test had to be wrong. Every other test Julia had done had been wrong. There always was a reason for her to not pass, right?
Our audiologist assured us that the test wasn’t wrong, that our baby was still healthy and beautiful and could have a perfectly normal life. She just didn’t hear from one ear. We would need to do short follow-ups on her left ear and maybe wear a hearing aid in her right ear, but she would be just fine.
At her first follow-up three months later, Julia no longer passed the sensitive hearing test on her left ear. We were told to see Dr. Abby Meyer to check her ears. Dr. Meyer spoke to us kindly and made us feel that no matter what, everything would be OK. We had to do a sedated ABR and CT scan to verify the amount of hearing loss and check Julia’s anatomy if we decided to give her cochlear implants. This time the ABR revealed her to be profoundly deaf in both ears, but her anatomy was ideal for the implant surgery.
After finding out that Julia was deaf, we had a few other appointments. We saw a pediatric ophthalmologist, geneticist and had a lot of blood work and other tests run. Julia was perfect!
We met with Mignon Miller, SLP, and Michelle Eibensteiner, SLP, for a speech evaluation before Julia’s implant surgery when she was 8 months old. I remember seeing the results of their observation and crying. I cried because I knew Julia was so smart and these two women, who didn’t know Julia and how smart she was, judged her based on a 50-minute exchange, I thought at the time. How could she do well on a speech evaluation when she doesn’t have access to hear the sounds she is to imitate?
I know now that it’s part of the process; it wasn’t to be cruel. It’s meant to show the baseline for where Julia is before she starts her hearing journey. There’s so much information that’s given throughout this process that we didn’t absorb. I’m sure they explained this to us in detail. Our world was spinning and had been for months.
Two weeks later, Julia met Chelsea Kimlinger, AuD, and Lisa Zagar, AuD, in audiology to discuss our implant choices and have her last audiology testing done.
Two months later, Julia saw Dr. Meyer and a team of wonderful operating room staff at in Minneapolis for her cochlear implant surgery. It was about a six-hour surgery, which is terrifying, but Dr. Meyer was sure to keep us updated throughout the process, and that helped a great deal.
The surgery was successful, but Julia was a sight for sore eyes when it ended. She was swollen from lying on her side for so long. We ended up spending the night at the hospital because her stats weren’t well enough to go home. We were grateful to be around medical staff for questions that would come up throughout the night. Everyone was wonderful to us, making sure that my husband and I could sleep in the same room with Julia for her comfort (and ours). We went home the next morning, and the healing process began. Dr. Meyer told us that the hard part was yet to come.
She was right.
After surgery, Julia had recovery time for three weeks before we took her to her exciting activation appointment, a day now known as her “hearing birthday.” It was beautiful and amazing, overwhelming and emotional. Julia responded to sound; she even cried when a noise was too loud.
After activation, Julia had many more appointments requiring travel from central Minnesota to Minneapolis and/or St. Paul. She had implant adjustments, speech therapy and surgical follow-ups. Now she has speech therapy three times a week with our local school district.
We have become a bilingual home (as if Julia didn’t have enough on which to focus), learning American Sign Language through the Deaf Mentor program. She has been doing incredibly well. Here we are, approaching one year post-activation, and Julia couldn’t be doing better at 21 months old. She has been working hard in her young life to make up for lost time. She signs nearly 100 words, speaks more than 60 words and uses three-word sentences, too! We will travel back to Children’s Minnesota in February for Julia’s one-year follow-up evaluation with speech and audiology, hoping to show everyone how far she has come.
As parents we couldn’t be happier with our choice to give Julia the gift of hearing. If we could go back in time, we would do it all the same.
Nikki Fargo is the mother of Children’s Minnesota patient Julia Fargo.