My Daughter’s Sudden Deafness: Abby’s Story

Imagine waking up one day and trying to talk to your child, only to find out they suddenly can’t hear you. That was the beginning of 7-year-old Abby’s hearing journey. Abby’s mom, Jamie, shares their story.

——-

My name is Jamie Cloud. My husband Phil and I are the proud parents of Abby and Emma who is 1 ½ years old. Our two girls are our breath of fresh air—they are our life.

Abby turned 7 years old on September 20, 2016. She loves fashion, art, music, and ballet, and started her first ballet class when she was deaf without her cochlear implants. On top of that, Abby loves playing with her baby sister, Emma, who arrived just one month after Abby experienced sudden deafness.

And Suddenly, There Was Silence

On January 4^th, 2015, I woke up to hearing Abby telling our dog that her head felt funny and she couldn’t hear the TV. I looked at her and asked what was wrong and she just gave me a blank stare and calmly said “Mommy, I can’t hear you”. I quickly woke my husband up and we rushed her to the local Pediatric Emergency Room.

After sitting at the E.R for 3 hours the doctors told us she had an ear infection and the draining was affecting her sounds and balance. After coming home, Abby was very dizzy and could barely walk on her own. The next day, Monday evening, I had a follow-up appointment with her Primary Care Doctor and after several evaluation tests, the doctor immediately admitted us to the Children’s hospital downtown Cleveland, Ohio. At this point, I knew it was serious but continued to keep faith and calm.

Losing Hope

However, more symptoms began to make me nervous. Abby couldn’t walk without me holding her hand and was very weak. She also then gained a left side facial palsy. After many tests, 10 to 15 MRIs, 2 spinal taps, steroids injected into ears, countless blood draws, allergy tests, and one week in the hospital, we still did not have any answers. My husband and I both talked to many Neurologists, Rheumatologists, Ear Nose and Throat doctors, Infectious disease specialists. I was starting to lose hope. At one point, an oncologist walked into our hospital room and wanted to check for leukemia and lymphoma. I refused to leave Abby’s side the entire week in hospital. The only four walls I saw were next to her hospital bed, unless we were being taken somewhere for a different test.

Finding a Solution

After the week of being in the hospital, the most amazing neurologist, Dr. Mark Scher, sent us home. He was concerned for my well-being as I was 8 ½ months pregnant at that time. After going home, Dr. Scher continued to call us every day to check on us and let us know that he and the other doctors were still continuing research. Everything they tested Abby for was coming back as negative.

Abby began seeing an Ear Nose and Throat (ENT) Doctor who referred us to an amazing Otolaryngologist to talk about cochlear implants as a solution to her sudden deafness. He became her cochlear implant surgeon, and even though he is very straight forward, I had complete trust in him.

For a little girl who had 100% hearing for 4 years and lost it overnight, we never questioned if cochlear implants was the right choice for Abby. We knew it was the right choice to take the chance and see if we could help her to hear again. Our little girl was able to hear before and our goal was to restore that hearing, even if it was through her implants. The only concern we had was if it would work, as we still did not know why she had sudden deafness.

The Search Continues

As a mom, I wish I could just take everything away from her and put it on myself. Nobody, let alone a 5 year old child who was always healthy, deserves what Abby has been through. Abby now regularly sees an amazing Rheumatologist regularly who is treating her with medication for an “unknown auto-immune disease”. After 2 months of putting Abby on steroids, Abby was walking on her own and running! This was the best feeling ever as a mom, after having seen Abby so weak since losing her hearing!

Bravery at Just 5 Years Old

Prior to Abby receiving her implants, the most amazing feeling was watching her running around with her cousins and friends. No one would ever know that, 6 months later, she wouldn’t be able to walk or hear.

I tell everyone that Abby helped me stay calm and strong throughout this entire ordeal. Abby never complained, cried, or questioned anything that was happening to her. If a 5 year old can be strong through all of this, then I knew I had to be strong too! Abby was always happy and had a smile on her face at all times. We did EVERYTHING we could to make this experience less scary for her.

As a mom, seeing your daughter go through all of these tests and not knowing what is going on was very difficult. To date, it is still difficult that we do not have a diagnosis, but I have complete faith in the doctors that are on her case even after 2 years. I knew I didn’t have a choice but to find answers and to help my child.

Our Support Network

We have the greatest support system—faith, family, and friends! Not only did my husband and I have each other and Abby, but both of our extended families were there with us every step of the way. We also have friends that supported us and helped us in any way possible. We couldn’t have asked for better friends and families. I also looked to Abby’s team of doctors for support.

Fast Forward to Life Now

On February 13, 2015, shortly after Abby lost her hearing, Abby’s little sister was born. Seeing Abby being a big sister today is amazing. She is always teaching her sister—who is now almost 2, letters, numbers, colors, and new words. Abby had her first surgery in April 2016 and her second in August, later that year. Abby started her first year in public school as a first grader and has many friends she loves to play with.

We live our life just the way we were living it before. We make sure anywhere we go we have batteries and her remote and we are good to do whatever we want! A child should get to experience everything, whether they can hear or not.

Since Abby received her implants, she regularly sees the audiologist for her mappings, and sees a private speech therapist twice a week. We work with Abby at home and trying to make sure she is up to par with all other first graders. I homeschooled Abby for kindergarten as we were going through this journey of finding a solution for her sudden deafness. Although it wasn’t easy because she was 100% deaf, it helped our communication and we learned sign language together. Every night we learn sight words, read books, math books, etc.

Besides the many tests and biopsies, I would say we lived every day to the fullest. Even though we went through a lot and was always on our way to an appointment, every day was a blessing for us. I never questioned our next step, it was never a choice. I did everything for Abby.

My Advice For Others

Smile for your child. If they see you scared, then they will be scared. Don’t be afraid to discuss different details with your doctor and even family and friends. You have to talk about it or you will stress yourself out and become depressed.

Keep faith and pray. Follow your heart and don’t give up. If you need a second opinion, then get one—don’t think the doctors will be offended. Don’t be afraid to ask for help or support.

Thanks for sharing your family’s story, Jamie!

Subscribe to the MED-EL Blog by entering your email below to get exclusive guest stories just like this sent straight to your inbox weekly!