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 Atresisa (EA=OA) web search for yourself or your loved one with EA/TEF or OA/TEF, VISIT:
In case you didn’t know: ea=oa, and tef=tof.
Tef is a tracheo-esophageal 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 is 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 plus they don’t know how to help pain in the esophagus.. It’s not easily seen, and often misdiagnosed. A person in the ER comes in with their loved one but they are stuck when it comes to getting care. If the patient doesn’t know what’s wrong, it can be traumatic. Now, If you have your cell phone with you, one click leads you to us. I wish that option were available ten years ago.
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 smart phone, tablet, computer or know someone with one or where one is, we want to and CAN help you. Why? because we can. What do we want, Absolutely Nothing. Solely run by EA people for EA people.
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. There are approximately 3500 births annually depending on where you live, and twenty years ago, EA was just seen as crib death. When EA strikes, it Strikes. Now when it does strike, there are immediately available solutions because of this modern age of medicine + engineering + biotechnology spanning the globe, and bridging the gap from pediatric EA to Adult EA care and support.
Our website, http://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 http://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 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 and YOU have NOW, is what few survivors like Steve, Christy and many others who have lost their lives due to non-existent help, haved paved this bridge. Not having the website when my hubby was looking for surgical intervention options has evolved to the mere fact that having a few friends in the palm of your hand is a blessing, and I for one, am grateful. 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. Who would of 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 aanything 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. 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.
Visit http://www.birth-defect Today. Thank you.
It’s been a while since I’ve blogged. I forgot how important it is to write and utilize the amazing healing tool of writing. My good friend Sara, is a an adult survivor of ea and many other issues probably no-one alive today struggles with. She is a member of our EA Team and since she is so grateful for having the opportunities afforded to her for her mother’s strength in being her advocate to her withstanding many surgical corrections that she overcomes daily, she has volunteered to start a support group for young adults, new parents and old-timers like Steve Wyles and Christy Cook, who tirelessly donate their time and energy to helping you, the seeker of new information, and asking the complex questions I used to sit beside my husband and ask at his hospital bedside. She has now taken on the administration of our new support group.
A decade ago websites like http://www.birth-defect.org and http://www.christyscourage.org did not exist. Fifty years ago most infants born with esophageal atresia and other birth defects simply died, commonly categorized as “Unknown Crib-Death”, because there were not a lot of autopsies performed on babies. The power of the internet, modern research and caring physicians have been paving a bridge to gap the lack of care for ea, tef/tofs, tbm,s and a lot of new acronyms for conditions never before explored are now able to get the attention and multi-disciplinary care never before available.
Times are a a-changing, and just as the industrial revolution changed the world with the invention of machinery, today’s catapult into stem cell research and the bio-printing of body parts is emerging as a solution opposed to a problem. Instead of the old school thought of oh my, I’ve never seen this before, what can we do, nothing? and a baby dies unexplained, not known why? Now a finger can click and at the tip answers are now available. Today I choose to do something. If everyone does something, then together a lot can be accomplished, solutions can be found and shared. It only takes a moment in time to help someone. Life is not a guarantee. We all have today, tomorrow is never promised, to anyone.
Today I’m grateful to be part of a worldwide team, working together to make a difference for EA and beyond. I pray today for all the families looking for support, that you may find the help and direction you need. Please visit our new support group for those Born Unable to Swallow at: http://www.birth-defect.org/#a-support-group
TORN between choices and actions, both of which have different consequences…visit
Please share, please help, we do what we do for others to empower & solve complexity.
It is truly amazing to me the concept of time. I have no sense of time. I am writing now one year following the death of my beloved husband Chris Paul.
I cannot begin to tell you the range of emotions that passed through me, engulfed me, consumed me, nearly destroyed me, but 365 days later, I am emerging from a very lost place to gaining a foothold on some solid ground.
A very good friend of mine told me to always move forward. I have always been a positive, goal oriented, and an extremely determined individual. When I became a life partner and two joined as one, I gained such strength from my husband’s love.
It was if all the songs from the beginning of time had changed their meanings to be “our songs”. We would sing together. His country and my rock and roll. We were a match forged from angels. I had thought I was in love before, as I had prior marriages, and my spouse also had two prior lives. My thought in the beginning was that the next one (someone) would either be three times a charm, or three strikes you’re out. I thank God everyday that for that third charm who made me a better person because of his love and his belief in me.
Now that I reflect that he is in my heart, but not in my bed, I find it still difficult to lay down at night comforted, or be blessed to wake up next to him in the morning. I miss his smile, his touch, his scent, his presence. All though I still see him in pictures and in things I stumble across that we have shared, I am still in love with him, and promised to love him until death do us part. In spite of death, that love does not wane. I have never known a love so great, and even if our time was short, I would not have traded our time together for anything.
I will move forward. I will carry on his legacy, as he died from a birth defect that as an adult there is still no cure I will honor his life and his love with continuing a relentless pursuit of modern treatment options for esophageal atresia, and its common companion tracheoesophageal fistula, known in the USA as EA/TEF or Overseas as OA/ToF. Maybe someday with stem cell research, bio-technology, engineering and science breakthroughs such as bio-printing , genetic causes and effects, maybe we can learn what causes the digestive system to grow abnormally in utero or manufacture a viable replacement esophagus created with one’s own stem cells to avoid rejection.
Please join me in my efforts by visiting http://www.birth-defect.org and http://www.chrityscourage.org and see what you can do today to learn, empower, educate and advocate for so many still struggling with what to do for their loved ones. Thank you.
Take the 1st step and go to where doctors are asking questions to help YOU OR YOUR LOVED one, who was “born unable to swallow”.
Visit http://www.birth-defect.org TODAY. PARTICIPATE IN THE CARE STUDY
Sponsored in part by http://www.christyscourage.org Making a difference for Esophageal Atresia in North Carolina, USA
Columbia University , and it’s talented team of researchers, want to know about your dna. They want to learn what causes the digestive gene to not grow properly when it’s being formed as a fetus in the womb. A baby, growing, but the digestive system goes awry, in many directions, causing Esophageal and other Atresia’s frequently seen beside Tracheoesophageal Fistula (Tef for Americans, and for others its Tof). My husband died from long term complications of EA(esophageal atresia) because there weren’t any answers for him yet.
Contact the team at Columbia, and join esophageal awareness.
Definition of cause 1a :a reason for an action or condition :motive, b :something that brings about an effect or a result , trying to find the cause of the accident; c :a person or thing that is the occasion of an action or state; a cause for celebration, ;especially :an agent that brings something about ; She is the cause of your troubles. d :sufficient reason; discharged for cause; 2a :a ground of legal action; b :case ; They are paid by the cause for their expert opinions.; 3:a matter or question to be decided ; The city council is involved with school department causes; 4a :a principle or movement militantly defended or supported ; the insurgents’ cause ; b :a charitable undertaking ; for a good cause;
Lets talk about CAUSE. Because there are many causes. Dictionary Cause… Thesaurus Cause… Legal Cause…Your Cause…My cause.
Many causes we know. Still there are many we don’t. I recently have worked on my cause, striving to find a solution for long-term care of esophageal atresia to diminish the mortality rate of older adults living with EA and related anomalies. Which brings me back to “the cause”. What causes Esophageal Atresia to Occur? What causes the gene containing the map of which evolution of the digestive system takes its course during the first trimester of pregnancy?????
During the first month of gestation, in humans, the endoderm, from which digestive and some glandular systems will develop. By the third month the embryo digestive system shows activity.
(This timetable Courtesy of https://childdevelopmentinfo.com/child-development/prenataldevelopment/#.WcZf68iGNEY the Child Development Institute: https://childdevelopmentinfo.com/ )
So this is where the gene goes awry, and mutates or is interfered with during the formation to grow into atresia (the absence of) in esophageal connections, tracheoesophageal fistula, duodenal atresia, and other related anomalies. In 1969 when my husband was born with Esophageal Atresia, little was known about EA. Now, with modern ultrasound and related technological advancements in medicine have made EA and other anomalies now detectable and apparent during later pregnancy, but not looked at closely enough to discern or discover what makes things go wrong?
I have partnered with Steve Wyles, 52 year old survivor of Tofs, and founder of http://www.birth-defect.org and partnered with the project director Priyanka Ahimaz, a board certified genetic counselor from Columbia University Medical Center to host their new Care Study. The CARE Study’s team works out of Columbia University Medical Center
visit: (http://www.cumc.columbia.edu/research) The principal investigator of the CARE Study is Dr. Wendy Chung who is a clinical geneticist. The co-investigators are Dr. William Middlesworth, the director a pediatric surgery, Dr. Julie Khlevner and Dr. Joseph Picoraro, who are both pediatric gastroenterologists. You can find out more about the study, it’s purpose, cause, and how it relates to you and your Esophageal Atresia or for someone you love and care for struggling for answers by visiting http://www.birth-defect.org, and scrolling down to the Columbia Medica Center Care Study. Links to the doctors administering the study, and forms of consent and how to get involved with participating in the study and how it can help you discover the genetic cause of what happens to the digestive system growing normally or abnormally.
I wish my husband Chris Paul were still alive to participate. I would really like to learn what causes Esophageal Atresia. Maybe if a cause is found, a cure or treatment can be a possibility. Chris lost in his struggle with esophageal atresia last November 2017. I believe in hope and in helping. What can I do today? I can share what I’ve learned, I can learn more about this condition. I hope that if you have EA or is caring for a loved with EA or related conditions, participate in the CARE study, so together we can work together, find answers and solutions.
Thank you for listening, and please visit http://www.birth-defect.org TODAY. participate in the CARE study. Help the doctors help your loved one.
Logo courtesy & copyright protected by:
No reproductions nor copying of logo permitted without written consent from Columbia University
In Loving Memory of Chris Paul,
November 18, 1969 until November 4, 2017
and other esophageal atresia patients who have lost their life in the pursuit of help, understanding , and the search for quality of life through knowledgable and modern care.
TIME has many meanings, both in the dictionary and beyond. Perception of time can be easily manipulated, but never contained. If you speak to a child, he or she might not have learned to tell time. If you speak to someone who doesn’t like their job, time seems to distort into what seems like never-ending. If you speak to a pregnant woman, or a teenager, time seems to halt to almost a standstill…”When will it be time for me to…..? And if you ask a senior citizen who wishes for more time, they will tell you that time goes by in a blink of an eye. Time can be mathematically measured, and there might be the “one atomic clock” that is supposedly the most accurate, but time, although dependable, is able to be manipulated and perceived to be immeasurable.
How long does it take? To make a new friend, maybe a few moments, maybe a few years. To master a craft could range from hours to years. To a teen waiting for his or her age to arrive and become eligible to drive, an eternity. To a loved one waiting outside an operating room for the outcome of a surgery, also an eternity. The length of time to perform one task or another, will vary based on ability or skill. The length of time to get from one destination to another depends upon the distance and the mode of transportation.
Mathematical equations can be used to measure distance, rate, time .When I went to school and was taught that you could find the answer to distance (d), Rate (r) and Time (t) with the formula: d=rt, meaning with this formula you could input an exact amount used on one of the variables, and get an answer to how far? how long does it take?, and how fast?
“Scientifically the question remains: Is this the longest day in Earth’s entire history? (today being June 21, 2017. the summer solstice,) and according to this VOX article, courtesy of:
Is this the longest day in Earth’s entire history?
Probably not, although it’s close. And the reason why is quite interesting. Joseph Stromberg did a fantastic deep dive into this topic for Vox a few years back, but here’s the two-minute version.
Ever since the Earth has had liquid oceans and a moon, its rotation has been gradually slowing over time due to tidal friction. That means — over very, very long periods of time — the days have been getting steadily longer. About 4.5 billion years ago, it took the Earth just six hours to complete one rotation. About 350 million years ago, it took 23 hours. Today, of course, it takes about 24 hours. And the days will gradually get longer still.”
So, since the beginning of time, the measurement of time has changed and is still changing. Does that mean that there is no “set Time” of time? According to the experts, measurements have changed, perceptions have changed and personally, I have no sense of time. So, no matter who you speak to about time, each person has his or her own perception. For me, sometimes one minute seems to last an eternity when I am waiting for it. Sometimes hours can go by when I am reading or researching, and can’t explain how that much time elapsed so quickly. I am chronically late, and you are either on time or late. That’s not a grey area.
I think the time has come where many more people are accomplishing many more things incorporating doing as much as they can in the shortest amount of time to get more time to do more.
My personal goal, and this is shared by my EA4A team, is to take the time to spread awareness to the lack of options for Esophageal Atresia Survivors. Study Long Term Outcomes, Learn more, Do more. The time is now to see what we can do together, to evolve, United We Stand.
In Loving Memory of Chris Paul , 11.18.1969-11.4.2016
The American Gastroenterological Association is the premier journal in the field of gastrointestinal disease, delivering up-to-date and authoritative coverage of basic and clinical gastroenterology and hepatology.
Not only does the AMERICAN GASTROENTEROLOGICAL ASSOCIATION aka AGA publish the latest in gastroenterological advancements in treatment, medicine and a source of innovation for health care providers nationally and internationally, it also supports research. The AGA Research Foundation is the foundation of the American Gastroenterological Association (AGA), is the leading professional society representing gastroenterologists and hepatologists worldwide. The mission of the foundation is to raise funds to support young researchers in gastroenterology and hepatology.
AGA members interested in learning more about participating in the work of the foundation are encouraged to contact firstname.lastname@example.org.
The American Gastroenterological Association is the trusted voice of the GI community. Founded in 1897, AGA has grown to include more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology.
I am VERY fortunate to work with an AMAZING team of Esophageal Atresia Adult Survivors and some very special doctors who believe that it’s time to evolve EA treatment past pediatrics forward into Adult Care. The staff of doctors and researchers at the University of North Carolina @ Chapel Hill and it’s Center for Esophageal Diseases & Swallowing is on EA’s side. They are just as perplexed about the issues yet to be solved regarding treatment of Adult EA, and in being so, dedicated to go the distance by taking the first steps in learning what happens in EA as patient age. From this research will be the open doors to the future of EA care post pediatrics.
There are many factors associated with EA in the initial stages of early infant surgical repair to enable those born unable to swallow a connection between their throat and stomach that they were born without. Not only does the EA infant need surgical intervention, but they also require a LIFETIME of maintenance ensuring constant care and careful close monitoring of what the eat to ensure a minimal amount of complications. Sometimes no matter how careful a parent is or how hard they try to be preventative, issues still occur.
Since the implementation of surgical repairs for infant born with EA with or without a TEF (Tracheo-Esophageal Fistula) the introduction and life saving colonic & jejunal interpositions, gastric pull ups, Nissen and Fonduplication procedures, the Foker Method, Magnetic stretching, along with other not so successful attempts at surgical repair, the mortality rate of infant EA deaths has decreased to an all time low, but the survival rate of Adult EA survivors is at all time high, of not surviving much past the age of 60. Survival is not always pleasant as aging parts cease to work. The struggle of going to physicians who do not know what to do for Esophageal Atresia complications. Emergency rooms all over the United States and the world, are a little freaked out about a condition that (a) they are not familiar with, nor (b) know how to treat. The pain and complexity of strictures, tortuosity, bezoars, increase in frequency while the quality of life in the aging EA adult is a constant vigilant fight to ingest non threatening foods, and be lucky enough to be able to eat and not be a the mercy of survival based on tube feedings.
Now there are the emerging generation of EA adults, looking for solutions and options. The older generation prefers to be left alone and not attempt a surgical repair as an adult, as they have managed to survive thus far and don’t want to rock the boat of wellness.
My mission is to implement multidisciplinary care for Esophageal Atresia in the Adult. My mission started over 15 years ago, when I observed my husband’s condition reflected an anatomy not pictured in any medical book that I know of. I was fascinated and empathetic at first. The lack of knowledge and studies for EA in the Adult astounded me, in this day and age of modern medicine. This is the age of stem cell research, engineering, science and medicine merging forward and advancements are made every day. I think it’s about time that doctors need to learn what happens, and discover new options in multi-disciplinary patient centered care. The thought of a surgical intervention at the age of 45 was a risk was my husband was willing to take to surgically to mechanically repair his aging and tortured colonic interposition. The lack of knowledge of what to do for him cost him his life.
He said if going through what I am going through can help one child not to have to grow up to suffer like him, it was worth it. In honor of you Chris Paul, and others who have not survived Esophageal Atresia, doctors are listening now.
One step forward is all it takes to make progress. I made one step forward with the help of a team of believers that there is something better out there, lets find out together what we CAN do, together, and not be stuck in I can’t do anything to make change. United We Stand. An idea was forged in 2012 between a handful of EA survivors and family members of TOF children who plead their sufferings to a team of doctors willing to listen, and the first World EA Survey was born.
I owe a lot of gratitude to those that believed in my husband, me, and esophageal atresia. Steve Wyles, Adult EA survivor and best known via his efforts of founding http://www.birth-defect.org, a website of EA awareness and empowerment of knowledge to over 60 countries worldwide; Bev Stark, Tof Mom (TOF= England’s translation of Esophageal Astresia/TraceheoEsophageal Atresia as OA/TOF-Oesophageal Atresia/Tracheo-Oesophageal Fistula) founder of the largest EA support group worldwide (Secret FB with over 3000 members-Secret for the anonymity of families of EA from birth to 75 and beyond “Born Unable to Swallow”, and Christy Cook, Adult EA survivor, and founder of Christy’s Courage Foundation (www.christyscourage.org) . These non doctors voluntarily met with an altruistic team of doctors who also volunteered their valuable time and now a few years later were chosen to present the results of their data collected and showcased at the prestigious DDW (Digestive Disease Weekly) in Chicago May 2017.
Without the collaboration of patients and doctors, issues cannot be solved. Working together as a team gives more ideas and ability to brain-storm what the next steps are in Esophageal Atresia Treatment advancement. I could never have come this far without my team. With my team, I have seen what can be accomplished. Dreams and ideas for better treatment can succeed.
You don’t have to be a doctor to help. All you have to do is want better for your condition or your loved one’s.
This year has been a huge one for esophageal atresia, and is already showing promise of a better future in study with shared knowledge. Knowledge = Empowerment. Learn what you can do today to spread awareness of Esophageal Atresia. Visit the following websites:
Regarding the citations & the links to the above articles & data, Click to read RED LINKS or copy and paste to your browser:
Eluri S, Kochar B, Reed CC, Paul S, Wyles S, Meyers MO, Dellon ES. High Burden of Persistent Gastrointestinal Symptoms and Ongoing Morbidity in Patients with Esophageal Atresia and Tracheoesophageal Fistula. Gastroenterology. 2017; 152 (Suppl 1): S431-S432 (Sa2049). Poster presentation at DDW, 2017.
Many thanks to the University of North Carolina @ Chapel Hill,
Nort Carolina, USA
The Center for Esophageal Disease & Swallowing
Eluri S, Kochar B, Reed CC, Paul S, Wyles S, Meyers MO, Dellon ES. Factors Impacting Patient-Reported Health-related Quality of Life in Adolescents and Adults with Esophageal Atresia and Tracheoesophageal Fistula. Gastroenterology. 2017; 152 (Suppl 1): S741-S742 (Mo1656). Poster presentation at DDW, 2017.
I am Super excited to announce that on May 6th & May 8th, some VERY IMPORTANT NEWS for Esophageal Atresia was released!! Esophageal Atresia is a birth defect that occurs during the formation of the digestive system and babies are born without an esophagus, and it is also accompanied by other anomalies such as a tracheoesophageal fistula (TEF=USA/ToF=UK and worldwide)
Many advancements have been made to repairing EA babies at birth, but what happens when those babies grow up?
THERE IS NO TREATMENT FOR ADULT ESOPHAGEAL ATRESIA.
EA adults, teens and children born unable to swallow are for the first time being heard by doctors willing to research their lifelong complications in dealing with EA/TeF (US) and OA/Tof (UK) . Our team is dedicated to the furthering of EA research, technology and advancement. Now, for the first time , Esophageal Atresia will be presented from the results of the First World EA Survey and it’s data at the world’s LARGEST Esophageal Conference in the world, the DDW, Digestive Disease Week FMI visit www.ddw.org
IT IS THE First & Foremost GI Event in the World !!!!!!!
Held Annually, this year the best of the best in the latest gastroenterological advances, technology and studies were held in Chicago, ILLINOIS, USA from May 6-9, 2017
The survey and study , written by myself (Sue Paul) and co-authors Steve Wyles, Bev Stark along with a phenomenal team of talented gastroenterologists who practice medicine and believe in ongoing research for their patients, at the University of North Carolina @ Chapel Hill. After gaining IRB approval* (see below for definition), The study was presented online and hosted by http://www.birth-defect.org and also shared in all social media support groups related to esophageal atresia to utilize the many people around the world with their knowledge and experience of their conditions. The results were analyzed by an accredited University who gave it’s IRB approval for it’s scientific, medical and ethical value. The results were submitted to the DDW (Digestive Disease Week) and was chosen out of approximately 1500 submissions for two poster presentations at the largest gastroenterological conference in the world.
See Video Highlights from DDW TV 2017 :
On May 6th and May 8th, Digestive Disease Week (www.ddw.org) honored our team of Gastroenterological doctors from http://www.med.unc.edu/cedas/ The Center for Esophageal Diseases & Swallowing with two poster presentations chosen from thousands submitted, the EA survey written by a very small team of myself, Steve Wyles and Bev Stark of England, and of course the doctors, but these doctors are beyond special. They believed in me, and out team, and our ideas towards a relentless pursuit of knowledge and empowerment for relief from crippling complications of a condition most of the world does not understand, and they genuinely wanted to help my husband Chris, and agreed to work with me & my colleagues across the pond for the greater purpose of what can we learn? and what can we do? Together.
I am still excited about a search I just performed at the DDW Website. This screenshot photo is of one paper out of two, obtained from the World’s First Ever Esophageal Atresia Survey. Written by those who believe that something needs to be done to study and effectuate modern treatment options for Esophageal Atresia in Adults.
Surgical repairs are usually performed within the first year of being born with Esophageal Atresia, with or without a TEF (Tracehoesophageal Fistula) , but children are fixed and repaired, but not quite cured. Much attention is needed to study long term effects of EA.
This is a first:
Meet Dr. Evan Dellon and Dr. Swathi Eluri from the Center for Esophageal Diseases and Swallowing located at the University of North Carolina @ Chapel Hill
http://www.med.unc.edu/cedas/ posing proudly at one of two poster presentations.
An idea was born in 2012, when I was searching the world for answers and found two people in England who not only did what I wanted to do by raising awareness for EA issues like my husband & I were struggling with, but they had brought the awareness of EA over there, across the pond in England and around the world to a world wide level with information and support from all over the world grew to over 70 countries, and over 3,000 members.
I met Steve Wyles, founder of http://www.birth-defect.org, and Bev Stark, Tof Mum and operator of the largest EA support group in the world ” Born Unable to Swallow” while I was walking the hospital corridors watching my husband suffer, and listening to doctors, scratching their heads, and trying to figure out what to do for him suffering with pain that morphine would not comfort.
I thought to myself, I am not alone anymore. I wonder what if we collaborated our ideas, worked together, how far could we go? Well, caring for a loved one, someone who doesn’t understand his condition himself, nor do the majority of doctors around the world, how about changing the world? I know personally, if I don’t understand something, I research it. I guess I’m not the only one who thinks that way.
Along this journey, I also met for the first time, another adult survivor of EA, Christy Cook, Founder of Christy’s Courage Foundation, a charity specifically for EA patients and families. Christy joined our small team and we have been working together since.
FMI please visit: http://www.christyscourage.org
Then I started bugging doctors. If I don’t know what to do for my husband, and they don’t know what to do for him either, just maybe we can we work together and find out what is wrong, and figure out a way to do something for it. Imagine not being able to eat, and every time you do eat, it hurts. ALOT.
Without modern treatment options, EA, with or wthout a TEF (Tracheoesophageal Fistula) can result in death. My best friend Chris Paul, the man I loved and said “I do” to, fought beside me until his last dying breath to bring awareness to EA. He worked with Steve Wyles. It was his idea that when the survey was launched, he said “Swallow your pride, Take the survey” Chris was a proud man, and grew up with a lot of embarrassment about his condition that he did not understand. He said ” if what we are doing can help one kid, grow up and not have to deal with what he is going through , then it’s worth it”. He lost his battle on November, 4, 2016.
Then , the conversation came between Me, Steve Wyles and Bev Stark, and our idea of a survey from a patient’s perspective. We talked among ourselves, “if we had the chance to ask doctors any question we wanted to know about EA?”, and then asked other EA patients and their families what did they want to learn from doctors? Wouldn’t it be something if we could create and run the World Survey? The idea was born. I brought the idea to my husband’s team of specialists at UNC CEDAS, headed by Professor of Medicine Evan S. Dellon, MD, MPH, and approached them with the idea. They liked the idea, Dr. Dellon allowed Steve Wyles to host the survey on his website, being that http://www.birth-defect.org’s platform is the largest in the world. We got together via the phone and the internet, and we (out little team and The University of NC @ Chapel Hill worked together for almost a year. It took months of running the survey, then a few months of interpreting the data, then from the results emerged two sets of data. These were submitted to the DDW, (Digestive Disease Week) and are being presented at the world’s biggest Gastroenterological Conference, visited by hundreds of doctors, scientists and pharmacological companies striving for the latest in medical innovation to solving esophageal diseases to help their patients. In other words working to help you.
If esophageal atresia occurs one in every 2500 births annually, and approximately 95-97% are surgically repaired shortly after birth, and have been shown to have complications their entire life, isn’t it reasonable to expect some sort of learned care as infants grow up to be teens and eventually adults? Take 2500 X 10 years = approximately 25,000 young adults that need treatment. When my husband was born in 1969 the mortality rate for infant survival of EA was 10% or less. Now the survival rate is 95 %. Do EA kids just grow up and out of the condition? No. They are often secluded, subjected to test after test after test, and repeating their medical anomaly to doctor after doctor. Their condition interfering with every aspect of their lives. I think that’s a significant number of patients in need of help. My husband died due to complications from experimental surgical intervention went awry. If EA treatment was available to adults, this might not have happened.
This is 2017. The age of bio-engineering , bio-printing, and stem cell progression, how can I get someone to look at EA, and what happens when children get repaired surgically at birth, grow up with issues, and now what?
This is why I fight for advocacy, awareness and further exploration on evolutionary treatment, as this is the greatest era of medicine that is merging with science, engineering, bio-printing and stem cell growth.
This effort was done voluntarily by people who care deeply about EA.
May 8th, 2017 Digestive Disease Week Poster # 2
These poster presentations are chosen out of (15-17,000 entries to the DDW (Digestive Disease Weekly) visit http://www.ddw.org/home, and see the idea that was born in 2012, between a few people searching for answers as adult survivors of Esophageal Atresia, and families who care about their loved ones born unable to swallow.
My husband Chris Paul, was born in 1969 unable to swallow with Long Gap Esophageal Atresia. His first operative report didn’t even have his first name on it when the proedure was performed at the tender age of 2 days.
Not a lot was known about Esophageal Atresia in 1969, but some pretty smart doctors knew what they were doing back then, when the saved my husband’s life as an infant. Enabled him the gift of being able to eat with the introduction of a piece of colon between his throat and his stomach, and is what’s now known commonly in pediatrics as a colonic interposition. He didn’t have a lot of major problems until he became an adult.
For children nowadays, The first ever Esophageal Atresia Treatment Program has evolved care and medicine in Boston under the talent of Dr. Russell Jennings, and for the best known care and maintenance of the children born every year with this congenital defect. FMI please visit:
Although, many advancements have been made for children born with EA/TEF (OA/TOF), there has been no advancement, study or treatment for Adults with EA.
IMAGINE, FOR ONE MINUTE, NOT BEING ABLE TO EAT.
For most it’s a forgotten luxury taken for granted every day. For those born with Esophageal Atresia
IMAGINE, FOR ONE MINUTE, NOT BEING ABLE TO BREATHE.
Breathing is a gift to those with EA/TEF or OA/ToF, but to every day people like you and me, it’s really hard to imagine not being able to eat or have difficulty being able to breathe your whole life. With a TEF, stomach acid can leak into the lungs causing aspiration, and chronic lung infections.
When my husband was born in Wilmington, North Carolina, his initial doctors attempted to repair him, but he suffered from anastamotic leak, which means that there is a leak at the attachment(s) between either the throat and stomach for gastric pull up, or when a piece of colon is used as a “replacement esophageal conduit” named a colonic interposition. In my husband’s case both the proximal and distal anastomoses were leaking, and his father brought him the University of North Carolina for help, and not only did UNC Hospital save my husband’s life, they cared for him from an infant until he grew into a pretty healthy teen.
As an adult, my hubby was often misdiagnosed, and it wasn’t until he started having major issues that a lot of medical professionals could not figure out what was wrong with him, and he ended up being hospitalized 4 times a year or more from 2011 until we met a wonderful gastroenterologist in Maine, Dr. Andreas Stefan. He began the research effort toward trying to solve how to help Chris Paul get properly diagnosed and treated, and Maine led us to Boston, with Boston’s brilliant medicine, a sugical revision was performed by the now Chief of Thoracic Surgery Dr. Raphael Bueno, on my spouses failing colonic interposition. Chris went from being hospitalized 4 times per year, to none for 18 months. For a short while, Chris could eat without trouble, but eventually the aging colonic interposition starting breaking down again. It had been doing a job it was never intended to do for 40+ years.
After being repaired in Boston, Chris & I moved to North Carolina to be near to our grandchildren, and we both felt safe knowing his health care would once again be served by UNC Hospital and staff.
In 2015, Chris colonic interposition developed diverticulitis, had tortuous angulations, twists and turns due to it’s non muscular structure, frequent restrictions and the same problems returned with a vengeance. A surgical repair was scheduled in August 2015. It was supposed to be a long & dangerous operation, but should be ok, and an approximate three week hospital stay would follow, and Chris would be repaired and better and home soon.
Hope turned to tragedy when approximately two weeks after his operation, the attachment in his neck leaked, eroded his carotid artery and he suffered a MASSIVE stroke, and a three week hospital stay turned into a nightmare of 3 months after stroke rehabilitation @ UNC Hospital, Chapel Hill, NOrth Carolina, USA.
This university is a teaching hospital known all over the world for their dedicdation and constant strive of innovation , cutting edge research and development in the future of medicine. I am thoroughly grateful for the assistance of Dr. Evan Dellon and his team. You may see more about the authors, including Dr. Dellon & what his team does at the Center for Esophageal Diseases and Swallowing at: http://www.med.unc.edu/cedas/
Thank you for reading and supporting EA Awareness.
You may see more about the co-authors,
Evan S. Dellon, MD, MPH, and can be reached through: http://www.med.unc.edu/cedas
For comments or questions about this blog or further efforts of ongoing research projuecdts, Contact Sue Paul, Project Director of EA4A Esophageal Atresia for Adults
via email: email@example.com, via blog: https://sueea4a.wordpress.com/
and on FB https://www.facebook.com/EA4A2015/
You can reach Steve Wyles at: http://www.birth-defect.org
and you can reach Bev Stark at : https://www.facebook.com/bev.stark.9
- *(IRB= An institutional review board (IRB), also known as an ‘independent ethics committee’ (‘IEC’), ‘ethical review board’ (‘ERB’), or ‘research ethics board’ (‘REB’), is a type of committee used in research in the United States that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans. They often conduct some form of risk-benefit analysis in an attempt to determine whether or not research should be completed. The purpose of the IRB is to assure that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in a research study. (Definition courtesy of Wikipedia)
Roads traveled. Paths crossed. Life moves forward, whether we like it or not.
I am at a new crossroad in my life. I was a wife it seems likes yesterday, but today I’m a widow, still a mother, grandmother and student. I am 51 years old and should be planning for retirement. I’m raising my son, an 18 year old with Asbergers (High Functioning Autism) & ADHD, along with two grandsons, aged 5 and 6. The house I live in is being foreclosed upon and a sale date has been set for April 6th. Today is March 3rd. Not a lot of time to do something. I just registered for school. I don’t qualify for social security benefits. I need a more lucrative earning capability. I want to work smart, not hard. 🙂 I also want to do what my late husband asked me to do. Continue to raise my family and help other adult esophageal atresia patients find resources and care. I believe that I can go back to school and learn how to study effective treatment methods for EA and share this information with others.
I’ve tried furthering my education a few times in my life, but life seemed to have a different plan for me. I am not giving up, I’m starting over. Instead of succumbing to grief, sadness and inability to cope, I am blessed with strength I never knew I had. I have travelled many paths, some with treacherously rough terrain. I’ve learned to adapt, switch gears, tuck and roll or hold still at an instant’s notice. I really want to slow down & take a deep breath. Breathe for a moment and think about what I want to do and where I want to go.
I’ve been stuck in a rut since I lost my best friend Chris. Felt lost, alone, and scared of tomorrow without him. But that was temporary. I didn’t realize how hard it would be to say goodbye to someone you love so much and don’t want to say goodbye. So I didn’t say goodbye. We said to each other “until we meet again my love”. After there wasn’t any life left in his weakened body I panicked. He had been the reason for me being who I am today as a better person for having known my soul mate. He would not want me to lie down. Can’t wasn’t in our vocabulary either. As a matter of fact, he’d tell me to get up off my fat ass, stop my whining and get’r’done! Well today, I’m getting up and moving forward. I read two VERY interesting articles this week on EA. One is about a new device, the 2nd new hope. You can find more info about these articles on my facebook page, EA4A Esophageal Atresia for Adults : https://www.facebook.com/EA4A2015/.
The first article I read is entitled “New Hope For Babies born without an esophagus”.(Please visit: http://www.click2houston.com/news/new-hope-for-babies-born-without-esophagus ) It is about exciting new advances in bioprinting a polymer esophageal “sleeve”, and artificial device opening doors to the solution of thousands of EA patients born without an esophagus, and long-term complications like life long recurrent strictures or restrictions at the connection point of surgery at the time of birth. It is designed to wrap around where the esophagus connects to the throat or the stomach. Adjustable to any size patient, and self dissolving so no need for a 2nd surgery after its insertion. It is out of this world AMAZING. There is no replication on record of an artificial esophagus. There are a few transplant attempts, and only 1 believe confirmed implantation of a donor esophagus. If the numbers are correct, one in 3,5oo births annually by say 50 years…that’s about 175,000 esophageal atresia patients that can be helped. That is a HUGE contribution and advancement for EA. Where pediatric advancements in EA repairs has impacted patients so much, that the mortality rate for infants born in the 1960’s and was at a scary 90%. Now the mortality rate is 5% or less. While the evolution of EA treatment has come so far, it is just as far as pediatrics. What happens when an EA child is born, repaired, grows up, and then what?
You go to doctors who don’t understand what you have. You go to “specialists” who do not know what to do for you. Although most doctors today know of at what esophageal atresia is, they do not know how to care for the condition, as to many disciplines needed for continued care. In cancer care, a team approach of different disciplines are utilized and its a team approached, patient centered care. Where a lot of different types of medicines machines and methods not available to except the most dire of cases. With EA, life can be dire. It’s pretty simple, how long do you think you can live without eating or drinking? Yes now there are artificial substances like boost or ensure that can be introduced to the human body via a tube inserted into their stomach or intestine, let me tell you firsthand, that is not easy, and seriously affects your quality of life. I’m excited that at todays’ age of medicine+science+engineering equals hope.
The second article I read from : https://www.audreysarmy.com/, posted on facebook from Audrey’s Army last week. Please watch the attached video for a very informative powerpoint presentation from Dr. Shaun Kunisaki MD, MSc. He practices at CS Mott Childrens Hospital in Michigan USA. Their first esophageal repair was in 1941, and their hospital is one of the country’s best in the midwest for esophageal repair and care. https://www.facebook.com/AudresArmy/videos/1441010005910788/
These advancements give me hope. If these opportunities were available last year, my husband might still be here.
Today I can do something. Today I am able to do something towards my goal. Effectuation of modern treatment for adults with esophageal atresia (EA USA or OA Worldwide).Today I will Get a goal. Set a plan to achieve that goal. Take steps in my plan. Manage my plan and achieve my goal.
Step one. Know your goal. Keep it realistic. Don’t fall into visions of grandeur. I believe in can. “I can” got me to 51 and still hoping for tomorrow. If I can dream it, I can do it. I dream of a world with treatment centers with solutions for individuals who need care and treatment without judgment or lack of understanding or limits. Decisions actually made by a doctor for the patients benefit, not what benefit it gives to the institution or the insurance companies. The distance between patient and provider is greater than it has ever been or intended to be. Step 2. How can I get from A. Step one to B. Step Z (goal). Make a map. Start at the beginning where you are, and one step at a time, list what you’ll need to do to get there. How long will it take? How much will it cost? Can I do this by myself or do I need a team. I definitely need a team! Where do I want to go? To whatever means necessary. Step 3. Get”R”Done . Reach goal, and maintain planned course. There will probably be a few speed bumps along the way, but don’t let them stop you.
I received a correspondence all the way from England. It was from a woman who has fought for 34 years to get her EA son help. She told me that when she read my husband’s story it made her cry. She told me about her frustration and her son’s frustration that they have tried and tried for years to get help for her son’s condition. Believe it or not, as I am writing this, my fb messenger dinged, and it was from him, her son, Steven, teaching me about a new messenger service that he uses. It was really strange to be writing about him. I’ve never met nor spoken to him, but we are connected. People meet for a reason.It truly boggles my mind that one moment, one second, people can communicate across oceans instantly, but there isn’t any treatment for adult esophageal atresia.
I am privileged to find that there are others out there searching for the same answers. The distances traveled to get the latest care, the much-needed money for research of long-term care and options for the children born unable to swallow, repaired, but far from cured. New variants are being discovered every day, and so much more funding is needed for research. This is the age of stem cell options, bioprinting, and the emergence of genetic discoveries .
Hope Changes Everything.