Cincinnati Children's Blog
  • Y&H Podcast
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • Y&H Podcast
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us
HOME/Rare and Complex Conditions/Down Syndrome and Tracheal Rings: Lessons My Daughter Has Taught Me

Down Syndrome and Tracheal Rings: Lessons My Daughter Has Taught Me

November 1, 2016
Tasha Barreda
1 Comments

My daughter Emma is a bright, funny and loving three-year-old girl. She’s also observant, quiet, and slightly reserved. And she has Trisomy 21 (Down syndrome), complete tracheal rings and laryngeal cleft.

She’s taught me many lessons in her short life, starting when she was about 2-3 months old:

Lesson #1: Her Condition Doesn’t Define Her

I was worried about her health and everyone would tell me that what she was experiencing is typical for babies with Down syndrome. She was congested and her breathing sounded really noisy – almost like a train.

Emma started getting sick a lot and spent longer and longer periods of time in the hospital trying to get over it.

So when she was due for a hearing check, I asked our doctor in San Antonio to also check her airway since she would be under anesthesia anyway. During this procedure, the doctor learned that Emma had complete tracheal rings. I was not familiar with this condition at the time, but later learned that most people’s tracheas are shaped like a “C”, and Emma’s were shaped like an “O,” which meant that her tracheal rings were not growing with her and her narrowed airway made it difficult to breathe.

Just because she has Down syndrome doesn’t mean that she can’t have something else going on.  Categorizing people by their special needs or conditions is limiting and doesn’t allow for the bigger picture to be seen.

Lesson #2: To Trust My Instincts

After learning how potentially fatal this condition was, I began writing letters to find a doctor that could help Emma. I was standing in a department store doing my Christmas shopping when Dr. Rutter called and asked how quickly I could make it to Cincinnati. It felt like Christmas already happened – all I wanted was for someone to look at her and say “Yes, I can help her.”

Dr. Rutter performed a slide tracheoplasty to widen her trachea, and she did great for about a year. She was able to breathe, gain weight and began walking.

He said that without that procedure to alter her complete tracheal rings, Emma wouldn’t have survived. I’m so grateful I trusted my instincts. 

Lesson #3: It’s OK to Speak Up and Ask Questions

Even though I was told that her noisy breathing is typical for babies with Down syndrome, I still asked her doctor to check her airway. I thought, what’s the harm in double checking?

Asking questions, if nothing else, will give me peace of mind. 

Lesson #4: To Never Give Up

She taught me to always have faith in her, no matter how much the odds are against us. At one point when Emma was in the hospital in San Antonio, her oxygen saturation dropped down to single digits. The doctors did everything they could for her and at one point were all standing around her and praying together.

Emma eventually pulled through and I promised that I would never give up on her, no matter the odds. 

Lesson #5: To Believe in People Again

This last year we spent more days in the hospital than out. We had a lot of bad days. People I didn’t even know were praying for her. Random strangers came to see us and brought gifts. People sent us food. At her last hospital stay in San Antonio, her room was completely filled with toys and balloons.

She was so sick and yet it was a happy room filled with hope. It renewed my faith in people.       

Lesson #6: To Celebrate the Small Victories

Having a child with complex medical conditions means that we’re in this for the long haul. We hope to eventually have more ups and downs but until then we’re stopping and appreciating where we are in the moment.

While Emma’s trachea looks great right now, she’s still a work in progress. Because she was so sick for so long, she has other problems going on, like lung disease.

We’re hoping that her lungs will get better with time, but until then, we’ll take each day as it comes and celebrate the small victories.

We are available to help answer your questions. To make an appointment or speak with a staff member, please contact our Division of Otolaryngology.

Related Articles

 

Meet Jack: Lover of Sports, Friendships and Hide & Seek
 

10 Things I Want You To Know About Down Syndrome  
 

Parents: Beware of Button Batteries During the Holidays
 

Woman with Down Syndrome Marks 20 Years of Employment at Children’s
TAGS:
  • airway reconstruction
  • complete tracheal rings
  • down syndrome
  • laryngeal cleft

About the author: Tasha Barreda

Tasha Barreda is a single parent of three amazing children. She is a United States Army Veteran and currently works for a company called AHMSA in inside sales. She has also been trying to finish a law degree. She loves singing out of tune, dancing out of step and making her kids laugh.

Write A Comment

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Comments

Annnnd, we’re back! – Really Really Much January 18, 2017 at 9:10 am

[…] sweet little Clementine’s story (which I’ve read at least a dozen times) and a recent video on our hospital’s website, there are no other personal stories out there.  My hope is to document our journey so there is […]

Topics

  • Cancer and Blood Diseases
  • Child Development and Behavior
  • Childhood Obesity
  • Chronic Care Networks
  • Cincinnati Walks for Kids
  • Featured Faces
  • Fetal Conditions
  • Fitness and Nutrition
  • Food Allergies
  • Ghana 2012
  • Health Care Public Policy
  • Health Care Quality
  • Health Care Reform
  • Healthy Living
  • Heart Conditions
  • Hospital Operations
  • Learning and Growing
  • Nurses Week 2012
  • Patient Family Experience
  • Patient Flow
  • Patient Safety
  • Pin of the Week
  • Rare and Complex Conditions
  • Research and Discoveries
  • Safety and Prevention
  • Share Your Story
  • Technology
  • The Young & Healthy Podcast
  • Uncategorized
  • Vaccines
  • Volunteerism
  • What's New
See All Topics
See Less Topics

Subscribe

Subscribe today to our family newsletter for tips, blog posts, podcasts and more.

Subscribe Now

Popular Posts

  • 6 Questions to Ask When Your Child Complains of Chest Pain 1.1k views

  • Lean, Purple Drank, Sizzurp: A Dangerous Teenage Drink 800 views

  • Stuttering In Young Kids: When To Be Concerned 648 views

  • Family Finds Heart Care Needed for Complex Condition 548 views

  • Social Media: What Effect Is It Having on Kids? 303 views

  • How To Increase Calories In Your Underweight Child’s Diet 288 views

About

The Cincinnati Children’s blog features thoughts and perspectives from our experts on all things pediatric health. This blog does not provide medical advice, diagnosis, or treatment. Learn More »

Contact Us
  • 3333 Burnet Avenue, Cincinnati, Ohio 45229-3026
  • 1-513-636-4200 | 1-800-344-2462
  • TTY: 1-513-636-4900
  • socialmedia@cchmc.org
Connect With Us
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us

© 2009-2022 Cincinnati Children’s Hospital Medical Center