Newborn Screening Family Stories: Layla's Story - Minnesota Dept. of Health

Newborn Screening Family Stories:
Layla's Story

Image of LaylaAfter the birth of our first daughter, we knew just what to expect when our second daughter was born. They are only 19 months apart and we were still in "baby" mode. The new room was ready, the car seat securely fastened, and monitors were strategically placed throughout the house.

My easy pregnancy led to a beautiful birth and before we knew it, we were holding a perfect little plump baby girl. A couple of fingerprints, pokes, and tests and we'd be ready to return home to our cocoon! All seemed good except for a failed hearing test that the staff suggested was probably just fluid in the ears. Before we knew it, we were happily at home cooing with our baby.

A week later we followed up to recheck Layla's hearing. This time an ABR confirmed that Layla had moderate-to-severe hearing impairment. In that moment, the world ground to a halt. The air we were breathing felt like molasses and nothing I was hearing made sense.

All I felt was fear of the unknown.

What if this was just the tip of the iceberg? Did she have other disabilities we had not yet detected? Even if it were just hearing impairment, would it cause her to struggle in school? Would kids tease her because she couldn't follow along? Would people stare at her? Would she be left out of sports? Birthday parties? I even wondered whether she was destined to a lifetime of short hair because long hair would make hearing aids squeal.

Every insecurity I felt as a child raced through my head. I found myself begging the universe to please, please spare my baby girl from the cruelties I had begun to imagine. I quickly realized that taking the next smart step was all we needed to do. I had been looking up this huge mountain trying to imagine what the peak would look like and, instead, I needed to look at the path right in front of us. So, at 3 weeks old, Layla was fitted with her first pair of loaner hearing aids from the Lions Infant Hearing Aid Program.

A few months later, we had a team of Minneapolis early intervention specialists working with our family. They played games with Layla, taught us Cued Speech to help her distinguish between sounds and gave us tips for keeping hearing aids in a toddler's ears; not an easy task. Our audiologist, Dr. Janet Hanson, kept us on an every-two-month new ear mold schedule and snuck us in to her busy schedule when Layla needed a hearing test or ear maintenance.

Before long, months slipped into years. And with time, my fears also slipped away. Busy birthday parties came and went. A schedule of Chinese lessons, swimming class and piano during the school year turned to summer camps, sleepovers, and play dates during the summer. Her dark brown hair grew to form messy curls that swept her shoulders (apparently long hair doesn't make hearing aids squeal). Layla is now one of the happiest and most confident 8 year olds I've ever met. Everything seems to come easy for her—from piano to math to friendships. She recently announced that she has decided that when she grows up she is going to be an aerospace midwife… knowing her, she'll make this the next big profession!

(Note: Genetic testing revealed that Layla has a recessive genetic mutation called Connexin 26. Connection 26 is asymptomatic and is the most common cause of congenital sensorineural hearing loss.)

An interview between 8-year-old Layla and her mom

Tell me what it is like to have hearing loss.

It is fun, exciting, and a tiny bit scary. If I ask myself why is it scary, it's because when you go into public I worry people will react in a way that makes me uncomfortable. But, it is fun and exciting because you have something different from other people. It is really nice being unique. I still make lots of friends easily and I've never had anyone ever tease me.

What are the best parts of having hearing loss?

It is fun to have a unique part of your style. Not everyone in the whole entire universe has hearing loss. I think hearing aids go really well with my unique style. Also, when someone is saying something I don't want to hear, I can just turn off my hearing aids. That is kind of funny!

What are the hardest parts of having hearing loss?

Taking care of my hearing aids, cleaning them and changing my batteries is a lot of work. Also, if I am in a loud place without an FM system it is really hard to hear.

What do you do when other kids ask you about your hearing aids?

When kids ask me a lot of questions it gets kind of annoying. If I'm not in the mood to explain I tell them, "I'm not in the mood to talk about it right now." Otherwise if I am in the mood, I explain it like this, "When I was born I had hearing loss and to help me hear better I got hearing aids. I wouldn't be able to hear you right now if I didn't have my hearing aids."

When you get a new teacher, what are some of the things you tell them?

I explain to them my hearing loss and tell them what they should do for me to understand them. For example, I ask them to talk clearly so I can understand their words. Also that they need to be facing me when they talk so I can see their lips. It really helps a lot to wear the FM system at school.

Image of Layla playingIs there anything else you would like to share?

I really enjoy having hearing loss. It is fun, easy, and most of all I love being different from other people in my family.