Feeds:
Posts
Comments

Posts Tagged ‘tracheomalacia’

Almost all children born with EA also have some form of mild to severe tracheomalacia.  In less severe cases of TM, the child will typically outgrow signs or symptoms by the age of 2.  In more severe cases of TM surgical intervention will be required.   Children’s Hospital Boston’s website has a great explanation of just what tracheomalacia is:   Tracheomalacia

Our son was born with Type C EA/TEF which was repaired at day 2 of his life.  At about 2 1/2 months old he was also diagnosed with tracheomalacia.   It took a while for the doctors to determine the cause of our son’s blue spells as most often in children with EA/TEF some of the signs of TM can mimic reflux caused by EA/TEF.   Also, during the course of his 2 1/2 months, he was intubated or sedated so the normal stridor you would hear was hidden by other aspects that were going on.  Because our son was having severe blue spells or death spells by simply sucking on a bottle, we had to explore surgical options to assist with the problem he was having with his tracheomalacia.  We were presented with two options for our son’s case:   aortopexy or tracheostomy.  We researched both options and discussed them at length with our son’s primary doctor and the nurses.  We asked the nurses to bring in the trach items so we could take a look at them and learn what it meant and what would  need to be done.  We asked a LOT of questions regarding the aortopexy and whether or not our son would be a strong candidate for that method.   We were fortunate to have such a great team that was willing to explain, teach and provide resources for us to look at prior to deciding which route we would try.

In the end, we opted to go with the aortopexy.   While I can’t say it was a magic bullet, it definitely eliminated the more severe blue spell episodes associated with his severe tracheomalacia; which in itself was a very good thing!   I think it is important to understand that surgical options were needed but equally important to remember that it is not going to eliminate some of the other underlying problems associated with TM right away and will take time just as mild forms of TM require.  Just as with EA/TEF, there are questions you should ask before you move forward with your surgical option for TM:

1.  How severe is my child’s TM?

2.  Does my child’s TM require medical intervention?

3.  How many TM surgical interventions have you performed and what methods have you used?

4.  What are the success rates for that type of repair?

5.  What are the potential long term complications or outcomes?

6.  Does my child have any other abnormalities in the airway that may be compounding the TM such as recurrent fistula, cyst in airway or other aspects?

7.  Can you connect me with other families that have had this procedure so I may ask them questions regarding their child’s repair and outcomes?

While we opted for the aortopexy, we still had to contend with stridor (noisy breathing); but heck I’ll take that over a blue spell any day!   At times, Brandon would sound like Darth Vader or a barking seal which is a normal part of TM.   We would get a lot of stares because of his stridor noises but we also learned to just go with the flow.  Simple colds during the first 5 yrs for Brandon would result in respiratory distress since Brandon’s airway was all ready floppy and compromised and pneumonia would set in since he was not able to remove mucous as successfully as a normal child.  It was also discovered at the age of 18 months that Brandon had developed a rare cyst in his airway from frequent intubation as an infant.   This cyst was blocking 85% of his airway.   The cyst was surgically removed, twice, because it was so large it started to grow back.   Essentially, on top of the TM, Brandon was now also diagnosed with subglottic stenosis.  So you can imagine the hard time he had with colds from an airway that was comprised from the TEF repair, the severe tracheomalacia, residual cyst growing in his airway and now subglottic stenosis.

In a lot of cases, doctors not familiar with TM would mistake its attributes for croup, asthma, reactive airway disease or even cystic fibrosis.  We learned the hard way, through trial and error that asthma meds were not his friend.   Asthma meds have a tendency to relax the airway to allow for better breathing; however with TM children because their airway is all ready floppy, relaxing the airway can compound the problem.   Over the years we learned what treatments work best for Brandon with his TM and it has made the world of difference.   I can say that the best friend you will ever have regarding your child’s TM is a GOOD pulmonology specialist.   The PS can help you develop a plan for your child to minimize emergency room visits and be more proactive in preventing full-blown episodes of distress or pneumonia.

Was your EA/TEF child diagnosed with TM?   What type of treatments did your pulmonologist recommend?

Advertisements

Read Full Post »

Copyright 2010 Bridging the Gap of EA/TEF: A Family to Family Support & Resource Network. All rights reserved

When first told of the diagnosis of EA/TEF, almost all families have those two BIG questions:  1.  What is EA/TEF and 2.  What does this  mean!    Under our sister site Bridging the Gap of EA/TEF, we were very honored to have Dr. Foker submit a write up for us to share with families.  This write-up contains the aspects of what EA/TEF is and some of the important questions to ask that lay ahead.

Initial Diagnosis of EA/TEF

Written by: John E. Foker, MD.
PhD

The figures in the picture below coincide with the article below.

(more…)

Read Full Post »

Sophia’s diagnosis

esophageal atresia, tracheosophageal fistula, tracheomalacia, reactive airway disease, gastroesophageal reflux disease, congenital nystagmus, anisocoria, Horner’s syndrome, strabismus, ptosis, congenital esophageal stricture, heart murmur, dimple on spine, sleep apnea, oral aversion, global developmental delay, and two pneumothorax!  Sophia has had twenty surgeries all together including ligation of tracheosophageal fistula, esophageal atresia repair, G-tube placement, distal esophageal stricture repair, tubes in her ears and 16 esophageal dilatations

My Sweet Sophia

On May 19, 2009 after ten hours of hard labor my daughter, Sophia,  was born.  After birth, I was able to hold her for about ten seconds before she was taken away to the NICU.  About four hours after she was born my husband flew in, he was stationed down in Florida at the time.  We went to truly meet our daughter for the first time.

I will never forget the first time I saw Sophia.  She was hooked up to so many tubes and wires.  That baby in the NICU couldn’t be my baby, how was this possible?  Sophia had some problems in the NICU, including a code blue, which means she stopped breathing just hours after her initial surgery.  Throughout her stay in NICU she continued to have problems with gaining weight and having to be continuously suctioned. (more…)

Read Full Post »

%d bloggers like this: