Devastating Diagnosis 

Dr. Gelvez knew something more was going on due to the cloudiness of the spinal tap, so he prescribed multiple antibiotics for Adalyn. An MRI revealed she had experienced multiple seizures and a series of mini strokes. She was diagnosed with a rare strain of bacterial meningitis and transferred to the PICU. Most antibiotics were resistant to the strain Adalyn had so doctors put her on a wide variety. 

“She went down very fast,” Alexa said. “We are so thankful Dr. Gelvez ordered the spinal tap so we could get a quick diagnosis. Initially we were in shock and trying to comprehend it all. It felt like whammy after whammy with no good news. I was begging for her to live hour by hour and that turned into day by day.” 

Alexa said the doctors knew just how to talk with parents of a sick baby. Blake Nichols, M.D., pediatric specialist in the PICU, took the time to explain every detail of Adalyn’s treatment plan. 

“I remember they really wanted us to understand exactly what was going on with her and it felt like she was in the very best hands,” Alexa said. 

Audiology Emergency 

After a couple of days, they noticed that Adalyn was not responding to voices anymore. 

Bacterial meningitis comes with a high risk of varying degrees of hearing loss. Twelve days after being admitted, Adalyn underwent hearing tests. 

“Anytime we have a child with bacterial meningitis, we consider it an Audiology emergency and the child’s hearing is tested quickly,” said Lisa Vaughan, Audiology program manager at Cook Children’s. 

Patricia Purcell, M.D., MPH, pediatric otolaryngologist at Cook Children’s, said catching it in time is vital – a month after the diagnosis the cochlea hardens, and implants are not possible. 

Adalyn underwent her first hearing test and results were consistent with severe to profound hearing loss – the infant’s only option to be able to hear would be cochlear implants. 

Finding Funding for Cochlear Implants
Pediatric Otolaryngologists Dr. Purcell and Allison Chisholm, M.D., specialize in cochlear implants at Cook Children’s. In 2023, they performed 27 implants and since the program started 17 years ago, more than 600 implants have been inserted. 

The FDA has not approved cochlear implants for infants under 9 months old, so private insurance does not cover the procedure or devices. Vaughan quickly sprang into action, and within 72 hours, funding was secured. The cochlear implants, procedures and all related costs would be covered by generous donors through the Cook Children’s Health Foundation and the Cook Children’s Health Plan. Alexa’s three children have always used the Cook Children’s Health Plan, and Alexa said it has streamlined everything in the Cook Children’s network. They have also learned about resources to help Adalyn such as a deaf and hard of hearing teacher who now comes to their house. 

“Having it all under one umbrella has made a night and day difference,” Alexa said. “It has not only taken away the financial stress but has helped us with booking appointments through our healthcare manager. We are so thankful to have that stress taken off us.”
 
Dr. Purcell came up with a plan before Adalyn was discharged. She had another MRI to be sure she was a candidate for implants, and after a month in the hospital, Adalyn was on the way home.

“We really appreciated that they were on the ball and proactive in giving us information so we could prepare,” Alexa said. “We had come so far from where we started not knowing if she was going to make it. We were ready for the next challenge, and I was already looking up how to learn sign language.” 

Adalyn’s Chance to Hear Again 

A couple of weeks later, at 6 months old, Adalyn was wheeled to the operating room for her first implant. She would need two procedures – one for each ear – due to inflammation from an ear infection in her left ear. 

During the procedure, Dr. Purcell had to be careful not to damage adjacent structures to Adalyn’s brain, facial nerve and carotid artery. Dr. Purcell said technology like CT scans allowed for preoperative planning and a safe procedure. After three hours, the implant was complete. 

“Adalyn was a trooper the whole time,” Alexa said. “She wasn’t sick at all and healed quickly.” 

“We absolutely love Dr. Purcell. She went above and beyond and always returned our calls herself. She took time to clearly explain everything.” 

Home for Christmas

One week later, Dr. Purcell performed the procedure on Adalyn’s left ear, and she made it home just in time for her first Christmas. Alexa said she will never forget the holidays that year.
 
“We didn’t have much time to think about Christmas with Adalyn being in the hospital,” Alexa said. “Cook Children’s had gifts waiting for all of us, including our boys Brandon and Levi, and we were so grateful.” 

Alexa said that when they took Adalyn home, it was like having a newborn all over again. 

“Before Adalyn got sick, she could fully roll over and hold her head up,” Alexa said. “We were starting at ground zero again.” 

‘We had our Smiling Baby Back’ 

On January 12, less than a month after Adalyn’s procedures, Kristi Reed, Audiology program clinical coordinator at Cook Children’s, turned on the processor for the first time and initially activated the implants. She spent time with Alexa going over all the equipment.

Within a few hours of adjusting to hearing again, they had their babbling and smiling baby back. 
“It was like a switch went on, and we saw her personality again,” Alexa said. “We felt relieved and joyful to have overcome that first big hurdle.”
 
Adalyn was back to giggling and playing peek-a-boo – her favorite. 

During the first six months after surgery, Adalyn visited Audiology frequently as they increased the range of the implants. Adalyn mapped soft and loud noises and quickly made progress. She also saw an Audiology verbal therapist who specializes in working with children who have experienced hearing loss. Alexa learned how to facilitate language and listening at home.
 
“I’m amazed at how far she has come,” Alexa said. “Before the implants, a jet plane could take off and she wouldn’t hear it. Now, she even hears the shaking of a bell and can tell where it’s coming from.” 

A Thriving Toddler

Seven months ago, Adalyn graduated from feeding therapy and started baby food. Now 17 months old, Adalyn continues weekly auditory and verbal therapy and physical and occupational therapy as well as in-home physical therapy and sign language lessons.
 
“From the beginning I said she was our little warrior, and she is showing us every day how strong she is and continues to work toward and achieve her milestones,” said John, Adalyn’s dad. 

Alexa said they look forward to their visits with Physical Therapy at Cook Children’s in Mansfield where they come up with new ideas to try at home. Adalyn has made significant progress the last couple of months and now rolls all over the place and is working toward crawling. Her joyful personality continues to inspire those around her. Alexa said she babbles all the time and as soon as they put on her “ears” in the morning she lights up and smiles.
 
“It’s a miracle to sit back and see it all unfold,” Vaughan said. “This changes the trajectory of these kids’ lives forever.” 
 

A great way to help children learn to listen and talk is reading aloud. Reading aloud to that growing baby in utero is a jump start to listening, talking and future reading. Reading aloud to children of all ages has huge benefits.

Research on reading aloud to children tells us that it:

• Is the single most important thing to help a child get ready to read and learn.
• Helps a child learn more, unique words. Children who know more words do better when starting kindergarten.
• Helps a child’s brain develop. Language development is vitally important from birth to 3 years.
• Helps a child love to read.
• Helps a child learn.
• Helps parents bond with their child.
• Sets an example for children that reading is important and fun.

The first three years of a child’s life is the most important time for learning. Reading aloud to children boosts their vocabulary, listening and talking skills.

Will watching TV help my child learn?

A parent may ask, “My child loves to watch TV for several hours a day! What is wrong with that?” Watching a little bit of TV isn’t a bad thing. It’s what a child misses by watching many hours of TV. It can cause problems. Children may miss playing games, drawing, hobbies, playing outside and talking with friends or family. Those activities help children learn about getting along with others, problem solving and having fun. Playing and having fun are main ways that young children learn.

Watching TV doesn’t require any interaction with others. It is passive, not active. The American Academy of Pediatrics says no more than 10 hours a week of TV, and no TV for children less than 2 years. This is based on research. When children watch more than 10 hours a week of TV, school scores start dropping.

How long should read aloud time be?

Families lead very busy lives in today’s world. It’s very easy to hand over smart phones or tablets to children for easy, engaging, digital entertainment. Children may learn to swipe screens before learning to turn a page. Reading becomes less important. There is not a set amount of time to read aloud to children. Even 15 minutes a day can make a big difference. Here’s a great example of how reading aloud can affect a child during the first 5 years:

15 minutes every day x 365 days x 5 years = 27,375 minutes OR 456.25 hours of reading aloud. That means the child hears reading aloud 456 hours before starting kindergarten. That’s a great jump-start to being a good reader.

Some ideas for fitting reading aloud into your day and week:

• Visit your local library. Get a free library card for you and your child. Check out books weekly. It’s FREE!
• Visit read aloud story time at the library.
• Read aloud at breakfast time.
• Keep books in the car to read while waiting at appointments.
• Make bedtime book reading a family tradition.
• Have a family story time every week.
• Keep waterproof books in the bath tub for a quick read during bath time.
• Read together as a family every day.
• Have older siblings read aloud to younger siblings.

Reading aloud should be FUN and FREQUENT! It is never too early or too late to start reading aloud to your child.

Resources:

1.Jim Trelease on Reading: www.trelease-on-reading.com

2.Read Aloud 15 Minutes: www.readaloud.org

3.Reach Out and Read: http://reachoutandread.org

4.Reading Rockets: www.readingrockets.org 

References:

1.Anderson, Richard C., http://files.eric.ed.gov/fulltext/ED253865.pdf

2.http://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Pages/Media-and-Children.aspx.

3.www.trelease-on-reading.com/rah-ch9.html

4.http://www.wonderbabiesco.org/UserFiles/File/Graven%20and%20Browne%20Auditory%2008.pdf

About the author

Becky Clem, MA, CCC-SLP, LSLS Cert. AVT, is a Rehab Services education coordinator at Cook Children's. Cook Children's offers four types of therapy plans, and tailor them for your child's individual needs. Cook Children's services and specializations include:

• Audiology
• Cochlear implant
• Occupational therapy
• Physical therapy
• Speech therapy
• Transitional care
• SPORTS