Feeds:
Posts
Comments

Posts Tagged ‘awareness’

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?

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 »

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)

 

Read Full Post »

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!

Read Full Post »

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.  Wishing you all a happy and safe journey into the New Year!

I am only one of the many faces of EA/TEF. I am only one, with a small voice but great hope. If you love someone born with EA/TEF, please join us in raising awareness in the month of January. While there is no cure for EA/TEF, there is hope, and where there is hope, there are miracles. I am one of those miracles. Love, Brandon (born 4/2007 with Type C EA/TEF and other medical complications).

Click the link below to attend our event, for every 1 attendee , that is one more person who has learned about EA/TEF.  Our goal is to exceed 1,000 attendees by the end of January 2012!

January 2012:  Color it Periwinkle to raise awareness for esophageal atresia (EA) and tracheoesophageal fistula (TEF)

brought to you by Bridging the Gap of EA/TEF

 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 4 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.

2012 Color it Periwinkle Initiative:

As we approach January 2012, we wish to continue our awareness venture in order to educate the public and raise awareness regarding a birth defect that receives very little attention.  Our goals in 2012:

1.  Make available to the public a line of EA/TEF (TOFS) awareness products for sale in which 15% of each sale will be donated to the Esophageal Atresia Treatment Program at Children’s Hospital Boston to aide in much needed research pertaining to the cause and lifelong complications associated with EA/TEF.

2.  Last year we reached 1,000 folks through our “Color it Periwinkle” facebook event.   This year we hope to reach the 2,000 mark or more.  What does  it mean to attend?  It simply means that by clicking “attend” on our facebook event you have prompted others to read your event and perhaps they too will  pass the event along and attend themselves!

3. Through our Bridge of Hope blog, in the month of January we will bring to you 31 stories of hope, love and faith.  Families will offer a glimpse in the window of their lives and what it means for them to have a child born with EA/TEF and the complexities surrounding EA/TEF.

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!”.

Read Full Post »

Hope Lives Here!

Sophia

Evan

Into our lives comes a special person who inspires us; to do more and to be more.   Thank you Kalli, for inspiring me to start Bridge of Hope.  It is my honor to share the remarkable stories of all of our EA children!

Over the next couple of weeks, I will be sharing two amazing stories with all of you.  I am sure that some of you will remember them from our EA Photobook Awareness Contest.  While all of these children were born with the same birth defect, it can come in so many variations.  It still leaves me in awe as to how each story is never the same.

  • Our first story will feature Ms. Sophia.  It is an honor for me to post Sophia’s journey as her mom, Kalli, inspired me to start this blog to share with other families.
  • Our second story will feature Evan.   What an amazing boy and what an amazing mom!

It is not easy to share a journey.  To open your heart and soul for the world to read.  So I thank both Kalli and Anne for their willingness to share their child’s and their family’s story.

I hope their stories can bring a ray of light to other EA families or newly diagnosed EA families. Aferall,

HOPE does live here!

Read Full Post »

We had such an amazing response to our EA/TEF Photobook Awareness Contest!   We are blessed and thankful for all who participated!   What an amazing gift and miracle all of these children are!   The category winners are as follows: Type A:  Gracen and Avery Type B:  Donovan and Ethan Type C:  Krew and Sophia Type D:  Kyle and Simon Type H:  Aiden and Nate Below are the featured category winners who will have a full-page photo feature in the aware … Read More

via Bridge of Hope

Read Full Post »

%d bloggers like this: