Born Unable To Swallow Support Group
April 10th 2018 this Support Group was Born, on the advice of a Leading World respected Surgeon’s request.
Written By Sue Paul
Hello, EA peeps. I am VERY excited about our new Support Group launched this week. If you have not been added from my friend list, Steve Wyles’ list or through an Esophageal Atresia or Oesophageal Atresia (EA=OA) web search for yourself or your loved one with EA/TEF or OA/TEF, VISIT:
Click on this link below to find this unique run group
In case you didn’t know ea=oa and tef=tof are the same.
Tef is a tracheoesophageal atresia fistula and is commonly associated with a 2nd birth defect, usually accompanying ea, but not always. Struggling with a birth defect is a daily challenge and can be life-threatening. If you need help from an emergency room, and your baby tef/tof can’t speak for themselves or an adult in so much pain they can’t speak for themselves, trust me I’ve been there, and a lot of attending ER physicians need direction of who to talk to and what to do for EA. Advocacy is usually the best route, but not always an option.
When an adult with EA enters the ER they face many barriers to care… first of all the ER doctors don’t know what to do to help and they don’t know how to help pain in the esophagus.. a person in the ER comes with their loved one but they are stuck when it comes to getting care. If you have your cell phone with you, one click leads you to us.
Working between the United States and England, a world-wide access was created for you a few years ago. What started as an idea to share what we know across the pond (aka the Atlantic Ocean), if we can create awareness between here and there, where else can we share? How far can we get our message of awareness and support to anyone that might need it? No matter where they or you are, or whether you have a smartphone, tablet computer or know someone with one or where one is, we want to help you. Why? because we can. What do we want, Absolutely Nothing.
100% of what our team does is volunteered. For EA families by EA families. Whether you are an Esophageal Atresia survivor, or care for an ea baby or are a medical provider searching for answers to help your patients, you’ve come to the right place.
Our website, www.birth-defect.org was founded by Steve Wyles because he’s an old fart with a funny condition that nobody really knew a lot about when he was born in 1962. He was later joined by quite a few others like myself, searching the internet looking for answers to “by the way, what does your husband have again? I often heard this from emergency rooms from New England to Florida anytime my hubby was stricken with issues from his long gap EA. I joined by myself, imposed my way to England, back to Boston, and North Carolina where a lot of answers lead to more questions pacing the hospital floors frustrated that I could not help the one I love with something he’s suffering from, and feeling helpless.
Then we met Christy Cook, of www.christyscourage.org, another adult EA survivor here in our home state of North Carolina. Another EA adult? A woman with EA and she devotes her life to helping other EA families? Wow. Now we’re getting somewhere.
When Steve started the birth defect team, he not only has EA issues as an adult but has a daughter with other rare birth defects he was searching the world for solutions for her as well. We were partnered with another support group, but have since moved from a few members to helping thousands of families around the world. I, in the meanwhile, was talking to any doctor I could access on the computer, and in person (who would talk to me) and explain to me what was causing my husband so much pain, and not a lot could be seen with an X-ray, an EKG or normal emergency room diagnoses. Christy was holding fundraisers to raise money to assist families to get to where they needed to go to help their babies born with EA. Steve works full-time at another job for his family. Christy works a full-time job for her family. I , at that time, worked full time to support my EA hubby and our family. My husband, Christy, her significant other and I networked at the Cracker Barrel Restaurant and we all conversed frequently, from then on, around the world and back, thanks to social media. We also have a new administrator for the group, and she is also an ea plus many other issues, struggled daily as a child, then met us in her teens, nervous about what to expect as an adult looking for medical care not able to be cared for past the age of 18 by her pediatrician. Enter Sarah Boury, who despite being deaf, having ea, only one lung and host of other daily hurdles she contends with as an adult EA, has graduated high school, and attends College, earning honors.
Also, last, but far from the least, is our latest administrator who is a tof mum from Ireland. We sometimes forget what it’s like for the infant ea baby and his or her family, where seconds turn to minutes, and minutes turn to hours, praying trying to wait patiently with their infant in the hands of a surgeon and a team of Neo-Natal Intensive Care, and lengthy hospital hours hoping everything will be ok. Please welcome Madzia Fraszyk, and her perspective keeps this fresh in our minds, that the struggle is real. But what Madzia and Sarah have now is what few survivors Steve and Christy know, and I know from not having the website when my hubby was looking for surgical intervention options that having a few friends in the palm of your hand is a blessing. We also have few caring doctors who support us from many countries. We now are able to ask a question from here in the US or in London, Spain, Poland, New Zealand, Australia, South America, Africa or anywhere and connect. Now. And find answers AND support. Whod’ve thought?
Now, in addition to the website containing what was formerly only accessible in a medical library is now accessible via your nearest device. A medical search of anything wrong, what it is, how can it be helped, and where help is, courtesy of the Birth-Defect Team, and FREE. No cost, except to Steve or Christy who usually foots the bill. Since we are Non-Profit, and we believe that multi-disciplinary care is needed for the survival of many life-threatening conditions, we now have the privilege and support of many doctors willing to take the time and listen to you, actually know what you are talking about, and are available to you here and now, and believe it not, there are actually answers and solutions to what in 1960 was unfathomable. In addition to medical treatment, support is key to survival. Although our support group was only launched last week, in two days we had a few hundred members. This morning we have almost 3,000 in less than a week. That is the power of how one person or a small team can make a difference.
My husband told me before he died, if we can learn from his failed treatment to help one baby, then his life would be worth the suffering he endured from a baby born unable to swallow to a healthy man with kids and grandchildren, a wife and a life. But, not enough knowledge yet to save his life. Today and tomorrow there are new techniques, new discoveries yet to be explored. Hope and Help for the thousands born daily unable to swallow. We hope you can find the information and the resources you need. If you have a question, want to lend a shoulder of support, offer advice on what you need or might have experienced, share your story with us. Tell your friends. Tell your family, tell your doctors and hospitals. Share knowledge. Share Ideas. Get help. Give Help. Today, United We Stand Can make a difference.
EA-TEF Support Group
Oesophageal Fistula and Oesophageal Atresia Support Group
Esophageal Atresia/Tracheo-Esophageal Fistula Support Group
If like me you were born with TOFS (read my Story page) then find a Support Group here