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Posts Tagged ‘tracheosophageal fistula’

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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This is the journey of Evan, through the eyes of his mom, Anne.   Thank you for sharing Anne!

“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.”  -Joseph Campbell, author. 

This quote has been on my refrigerator for the past 10 years, ever since my son Evan was born.  I’m not sure it would have meant anything to me if not for the birth of my beautiful boy.

My husband Mike and I were married on September 4th 1999.  We were anxious to have a baby because I was older and we didn’t know if we would even be able to have children.  Sadly I had a miscarriage in February of 2000 but we were willing to try again when we could and I became pregnant again in June of 2000.  Evan was due on March 3rd, 2001.  My pregnancy was uneventful and all signs pointed to a healthy baby.  Unfortunately I developed pre-eclampsia at 30 weeks.  3 weeks of bedrest followed and on January 18th, 2001 at 11:41 a.m. Evan entered my world and my life has never been the same. No one seemed overly concerned at OSU that he was going to be 7 weeks early so we weren’t either. During the c-section the doctor commented on the fact that he had punched his hand out and he had an extra thumb.  I was devastated!  My baby was not “perfect”.  What were we going to do?  Little (more…)

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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…)

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