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How exciting to say that BTG is now on its 6th year of “Color it Periwinkle” to raise awareness for EA/TEF.    It is amazing to know that a small group folks who started this movement back in 2011, has had such an amazing and positive impact.   May we continue to grow and raise awareness for our present, past and future EA/TEF children and adults.   I would especially like to thank all the folks who helped this movement of awareness to grow over the past 6 years.  You have all been amazing!

As we ring in the New Year, I ask everyone to please take a moment and join our cause to raise awareness regarding esophageal atresia/tracheoesophagel fistula.

What can you do to help?

The answer to this question is very simple.  Spread the word!   There is no travel required and we are not asking for donations to such a cause.   We strongly believe that by sharing stories, facts and other aspects we can reach the eyes and ears of many.  The more people advocating the greater potential that awareness will increase and that a birth defect that most often elicits a “What is that?” will become “I know what that is!”

Share our facebook event ticket to help raise awareness:

https://www.facebook.com/events/1926369907591208/

 An estimated 120,000 infants in the U.S. are born with birth defects each year. Genetic or environmental factors, or a combination, can cause a birth defect; however, the causes of 70 percent of birth defects remain unknown(1), 

The March of Dimes statement above, is a powerful statement which provokes thought regarding the need for better research and awareness pertaining to birth defects in which there is no known cause.   It is extremely important to promote prevention to ensure all women have a healthy infant; however, it is also equally important to push the envelope, raise awareness and advocate for those infants born with a birth defect which has no known cause.

In the month of January the March of Dimes holds its annual “National Birth Defects Prevention Month”.  This national event insipired my husband and I, in 2011,  to start the First Annual Worldwide “Color it Periwinkle to raise awareness for esophageal atresia/tracheoesophageal fistula”; a birth defect which falls into the category of “no known cause”.

“My child is 1 of the 70%”

I look at this statement and even after 8 ½ years, it is still a hard statement to digest, but also one that has driven me to advocate for my child and many other children born with esophageal atresia/tracheoesophageal fistula (EA/TEF).  We firmly believe that more research means better tools to advance the medical technology and other arenas for children born with EA/TEF and the multitude of additional birth defects that can co-occur with this condition.

Facts about EA/TEF

There is no known environmental cause and/or direct genetic link to esophageal atresia.  It is known though, that more research needs to be done regarding EA/TEF; not only to formulate the cause of this birth defect but to understand the potential lifelong complications our children may face with such a medical disability.  The variations of EA/TEF are so complex however and not every child is born with the same set of circumstances which can make it that more difficult for the medical community to differentiate how it will effect our children in the future to come.  EA/TEF is truly a puzzle that has yet to be put together.

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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?

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.

Continue Reading »

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.

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

001 newsletter (1)

001 newsletter (1)001 collage (1)

11,000 Reached!

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!

001 invite (1)

 

fleurroseEAT is a European charity based non-profit with EAT members from France, Italy, Austria, Germany, UK, and the Netherlands.  Their primary focus is to provide support to both EA families and health professionals. They do welcome associate members from all parts of the world.

EATs 4th International Conference on EA is scheduled for September, 2016 in Sydney, Australia!

Be sure to check out their website for complete information!

Below is a list of EAT member website links:

AFAO (Association Francaise de l’Atresie de l’Oesophage) – France
www.afao.asso.fr

FATE (Famiglie con ATresia dell’Esofago) – Italy
www.atresiaesofagea.it

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Austria
www.keks.at

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Germany
www.keks.org

KEKS (Kinder und Erwachsene mit kranker Speiseröhre) – Switzerland
www.keks.ch

OARA (Oesophageal Atresia Research Association) – Australia
www.oara.org.au

TOFS (Tracheo-Oesophageal Fistula Support) – UK
www.tofs.org.uk

VOKS (Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting) – Netherlands
www.voks.nl

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