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Archive for the ‘Awareness’ Category

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?

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In the age of social media, it is a wonderful place for people to be able to connect with others who are going through similar circumstances.    These Facebook groups have allowed us to connect with many families of a child born with EA/TEF, as well as discuss some of the other birth defects that can co-occur with EA/TEF.

Some of the support groups on Facebook are Open groups, which means that when you post in the group, not only does the group see your post but it also is shown on your personal Facebook timeline.  Other groups are closed groups, which means they are confidential and only the people within that specific group can see your post.

Below is a list of of some of those groups classified by whether they are an Open group or a Closed group:

Open Facebook support groups:

Closed Facebook support groups:

This is a small list of some of the Facebook community support groups out there.

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In honor of awareness month, I created some new awareness fact sheets regarding EA/TEF that can be more easily shared.

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EA Ribbon 1In just 5 days we have reached an average of 11,000 people with our Color it Periwinkle event, Bridging the GAP facebook site and our Bridge of Hope blog!   That is an exciting milestone and we thank ALL of you for your continued help in raising awareness regarding Esophageal Atresia!

The month of January is birth defect prevention and awareness month.  We ask you all to continue to “Pass the Ticket” to Color it Periwinkle for EA/TEF.  While someone may not join the event itself, know they are sharing the event, sharing items from our Facebook site and sharing items from our Bridge of Hope blog.

When you “Pass the Ticket”, you could potentially be reaching a mom or dad who has just started on their journey and is looking for support, an adult EA/TEF looking for resources or support, or even possibly a doctor’s office or hospital who is going through their first case of EA/TEF looking for resources/supports for family members.

One voice may reach several, while thousands can reach many!   It takes a village!  Thank you to everyone!

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10167924_10153140274806718_979895640252057223_nDo you ever have a hard time explaining your child’s condition to them, to other parents, to school teachers and/or friends?   The book “An EA/TEF Story Inside and Out” by Vanessa Munsch is a wonderful resource to use.

An “EA/TEF Story Inside and Out” is geared towards explaining what EA/TEF is.  It incorporates ‘sharing time’ into its theme and can be used as a conversation starter to talk about how EA/TEF affects your child specifically.

This book is a great resource for family members, local hospitals, doctor’s offices or schools.  Proceeds go back to help Ea/Tef children worldwide and is available for sale at www.eatefbooks.com.  The book is available in American and British English (TOF), French, Italian and Spanish.

Host an EA/TEF “Sharing Time” at school

001 invite (1)For Awareness month, I am going to print out some “Admit One” pictures, attach them to Vanessa’s book and distribute to my son’s school and pediatrician offices!

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“Great thoughts speak only to the thoughtful mind, but great actions speak to all mankind.” – Theodore Roosevelt

Social media can be such a powerful tool in connecting people who are looking for others going through similar situations or just simply looking for thoughts, suggestions and ideas.

In 2007, when our son was born with EA/TEF there were very little resources on the internet regarding esophageal atresia/tracheoesophageal fistula.   It was not until 2010 that we met some amazing fellow EA families online via social media.  It was an AMAZING feeling to be able to meet some of these families face to face and know we were not alone in our journey.  Our group was small at first, with families from Massachusetts, Connecticut, Rhode Island, New Jersey and California.  It is these families who helped inspire and create “Color It Periwinkle to raise awareness for esophageal atresia”.

The birth of this awareness campaign started with these families in 2011 and has continued to grow 6 years later with more amazing families throughout the world!  The campaign and ribbon we created has special meaning to our families as we continue to grow.   It is a tie that binds us together as a community  The colors we chose have specific meaning:

Periwinkle signifies eating disorders, esophageal cancer and GERD.  All items for which EA/TEF children can be at risk for.

The white signifies the innocence of our children.

The passion these families had, and continue to have today, is always such an inspiration to me.   You are all an inspiration everyday and I thank you for everything that you do!  THANK YOU!

Leave a note of gratitude for the person(s) who inspire you!

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On the day you were born……

We were told you would probably never eat by mouth.

We would be lucky if you survived through the week.

That our lives, as we know it, would be changed forever……

On the day you were born, you proved to be a fighter.

On the day you were born, you changed our lives for the better!

“Every 4.5 minutes in the U.S. a child is born with a birth defect”

In 2012, Utah parents of children with birth defects in collaboration with the National Birth Defects Prevention Network created a powerful PSA regarding “On the day I was born”.  The PSA was funded by a private organization.  www.endbirthdefects.org

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On the day I was born PSA

January is National Birth Defects Prevention month and we use this month to raise awareness regarding EA/TEF and the numerous birth defects associated with EA/TEF.  To Learn more visit the National Birth Defects Prevention Network.

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