Born Unable to Swallow
Our Medical Survivors and Little Heroes
This Website has been Endorsed by Leading USA Surgeons and seen across the World by other Surgeons we have contact with.
United We Stand
Ea-Tef and Tof-oa
What Stephen Wyles has been doing since having this website built in 2013, he has linked up families with trusted Surgeons around the world with the help of other world leading Surgeons. places like: Mongolia, UK, USA, Canada, Philippines, South Korea, Libya, India, Nigeria, Pakistan, Counties in Europe, Bangladesh, Indonesia, helps to link up Families in same country building local supports groups, So Parents can Support each other, this website is seen in 193 countries, the Facebook group linked to this website is also very unique to, having Dr’s, Surgeons, and Nurses recommending this site and the Facebook group, to their Patients.
Stephen Wyles also has been posting out as a Car Stickers, the logo seen under here, to Families around the world, paid for by himself as seen on pages on this site, bringing awareness for this condition for the children born like himself.
Awarded by Camilla, known as Queen Consort here in England
In July 2024 Stephen Wyles was asked by the Authors of Pediatric Surgery in Tropics (PST) – aims to improve scientific communications among pediatric surgeons, to write something about his life.
Stephen Wyles with the help of his Sister, who was an ICU Staff Nurse and went though Covid on a ward in England, put their heads together and came up with more of Stephens memories, which has now been Published in the Pediatric Surgery in Tropics (PST) Journal.
This write up consist’s of things not written on the page found on the menu – Stories on this website, it is written on 2.5 pages of A4 size paper, pages 196 – 197. (Born unable to Swallow)
Click on this link below on the banner, then click on the page link saying (Read the Current Issue)
We added Colours to each of the letters to help recognize the different types. E is also known as H
If you would like to download the single letter, and colour, of your pre operation, click on this link below, or look in the menu at top of page.
Born unable to swallow Ea-Tef or Tof-Ao five colours for five operation letters
Please Read
It needs to be said that at no point do our website team know the identity of any child or family members, in Hospital, no personal details are shared
(unless our team finds Parents looking for a surgeon and his or her team) This would be the only time we know a name.
To date, this has never been asked for by us or passed on by any of the medical staff we talk to.
All involved follow a strict rule of professionalism of a very high standard.
A Facebook Frame Header (Click to save it)
Ea-Tef and Tof-oa
We have been granted the use of this American hospital’s logo which is normally covered by copyright law.
As we have dealings with this outstanding team of Doctors
Ea-Tef and Tof-oa
PARTICIPATE IN A STUDY
WE ARE INVITING FAMILIES TO PARTICIPATE IN A GROUND BREAKING RESEARCH STUDY THAT INVESTIGATES GENETIC CAUSES OF EA/TEF.
To participate, the study team will require a blood or saliva sample from children and/or adults with EA/TEF and their parents (if possible). Medical information about the person with EA/TEF in your family will also be obtained.
Participation in the study is completely free and families from all over the world are eligible to take part.
Interested families can be enrolled and kits can be mailed to your home to enable you to give your sample for the study.
LOOK DOWN for more INFO
Ea-Tef and Tof-oa
TRACHEA-ESOPHAGEAL BIRTH DEFECTS
Esophageal atresia (EA) and tracheoesophageal fistula (TEF) are the most commonly diagnosed birth defects related to the esophagus and trachea. These conditions occur when the trachea and esophagus do not fully separate during fetal development. EA causes the esophagus to not fully form, and as a result the esophagus does not connect to the stomach as it should. In some patients, a TEF can develop, which is an abnormal connection between the esophagus and trachea.
Trachea-esophageal defects, such as EA and TEF, occur in about one out of every 3,000 live births. These types of birth defects may prevent proper breathing or feeding in newborn infants, but can be corrected with surgery (with a survival rate of over 90%). Conditions like EA and TEF may cause patients to experience health issues, such as difficulty swallowing or breathing problems, later in life.
It is not yet well understood how these birth defects happen. There is compelling evidence that suggests there is a genetic cause, but specific genetic mutations are only known for 12% of trachea-esophageal cases worldwide. The goal of the CLEAR Consortium is to better understand the genetic causes of trachea-esophageal birth defects, and to improve the health outcomes and quality of life of patients.
Click here to visit the Centers for Disease Control and Prevention (CDC) fact-page on Esophageal Atresia.
For more details or to participate please contact us at: [email protected]
Contact Info To Enrol on Study, taken from letter above to help you.
Click on link below to set up your email
[email protected]
Researching the cause and treatment of trachea-esophageal birth defects
The CLEAR Consortium is a collaborative research program dedicated to discovering the genetic causes of trachea-esophageal birth defects, such as esophageal atresia and tracheoesophageal fistula (EA/TEF).
Funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, our goal is to better understand the origin of these conditions, enhance diagnosis and improve treatment.
Purchase your Medical Tags, Lower Down Page
Don’t let the world change your smile.
Make your Smile Change the World.
This website has been running since around 2013 and is personally owned, it is not run by any Charity.
Stephen Wyles was born in 1962, unable to swallow in England, when his best friend, his Nan died in 2011-12 she left him money in her will, with a note saying, Stephen go change the world.
He gave it some thought, and as he had never got to personally thank the two general Surgeons that did save his life, and the nurses, he put this website together to put something back for others, so that their efforts to save his life did not go to waste. He would also like to thank the teams of Doctors and Nurses in the NHS, here in the UK, who over the years have looked after him and this condition, and without the Nurses and their pure dedication, his life could have been much different. Life is all about teamwork.
Over time this website has grown in size, it has also been Endorsed by top leading Surgeons in this area of medicine, and Stephen has earned the respect of the Worlds Surgeons, who in turn help him to help you the parents, and adults. After 4 years Stephen meet Chris Paul from the USA, via the internet and became good friends, and got to know Chris Paul’s Wife, named Sue Paul after Chris died from Ea-Tef Stephen invited Sue to join him in bringing about better awareness for this condition.
Since that date, Stephen and Sue came up with an idea that earned them as Co-Authors TWO USA Medical Papers. Plus both of them were personally named on a 3rd ongoing medical paper that they are involved with, before any of the charities.
This site holds a huge amount of info if you would like to help add more Email:- [email protected]
And one of the volunteers linked to the team will pick it up.
Click the link below to meet the team, and find the Support Group details, run linked to this Site.
Our Group is slightly different than most, we have Surgeons within it, one mother asked to join, on her answers as to where she found us she wrote – our Surgeon told us to join because he was already in it.
Ea-Tef and Tof-oa
On the right-hand side, you see our Metal Badges, printed on stainless steel, made in England, these were given away in our 2021 sticker post out, more about this can be seen lower down, funded solely by Stephen Wyles.
Note all our logos etc are FREE to copy and use.
We are a small team, with BIG ideas. Together, we are making a difference for families and providers.
We are connecting and networking around the world to get answers to YOUR medical and social needs. Our mission is simple: Solutions.
Why? Because it’s time, and we know the struggle is real being born unable to swallow. Let us work together.
United We Stand
We are supported by the leading innovators in esophageal solutions. Pioneers such as Boston’s Children’s Hospital, Columbia Medical Center, The University of North Carolina at Chapel Hill. Plus our team is linking up with the Surgeons at the world-known Johns Hopkins All Children’s Hospital (JHAC) for us, it is exciting times ahead in 2021.
If you go to the Menu – Support page, you will find other world Hospitals that can be found on this site, showing support for this site. Plus a list of World Surgeons we have talked to, like – (Professors Dr. Evan S. Dellon & Dr. Michael O. Meyers at the University of North Carolina @Chapel Hill, North Carolina, the USA who worked with us on the Two Medical Papers Steve Wyles and Sue Paul are down as Co-Authors on)
At the bottom of this page, you can see this site holds 3 Endorsements, Doctor / Surgeon Steven Rothenberg – Rocky Mountain Hospital for Children USA. Dan von Allmen, Professor of Surgery, University of Cincinnati USA. Dr. Cristobal Abello MD Pediatric Surgeon, CMIpediatric International Clinic of Barranquilla Colombia.
Doctors dedicating themselves, and their groundbreaking techniques to us, because they care.
We care. We are 100% Non-Profit.
Our research efforts have resulted in published studies and together we are making a difference. We provide education, resources, awareness posters, and who we are connected to our medical professionals paving the road to esophageal solutions. If you have a medical question, if you need to travel to get to a medical provider, if you think you are alone and need support, WE ARE HERE. We have answers and solutions. We know because we are EA survivors, who fully understand how hard it is to get difficult questions answered.
We are The Birth-Defect Team.
Also in September 2020, their full names were added to a third Paper – European Journal of Human Genetics – with their names showing before the EA Charities from around the world, a total honor, the Email read:-
Dear Sue and Steven,
I hope you have both been well.
I wanted to share the good news about the CARE study. Our paper on the genetic analysis of 45 families was accepted for publication in the European Journal of Human Genetics and both of you were acknowledged in the article because your help was truly invaluable.
Thank you again for your support of the study!
Regards,
Priyanka
The link to the article is below:
https://www.nature.com/articles/s41431-020-0680-2
(CDCN) and the Chan Zuckerberg Initiative
The team at birth-defect.org has helped support recruitment for survey which is a part of the ROADMAP project, run by the Castleman Disease Collaborative Network. This project is focused on understanding the state of drug repurposing in rare diseases and create a shared, free resource that will make it easier to pursue successful drug repurposing. If you participated in the survey, we would like to thank you for your time! You can read more about the project here: https://cdcn.org/roadmap.
For our website to be asked to be involved was a great honour for our small team.
As we are not a charity we got the none profit charity – Christy’s Courage run by an Adult living with – Ea-Tef – involved
Helpful Links
READ about our Medical Tags
Medical Dog Tags for EA – TOF – VACTERL
A Book about the story behind the story Lachlan
Written By MUM Lovely book well recommended
Renee’s Story, A very small number of babies with Edwards' syndrome (about 1 in 100)
Born also with Ea-Tef
FREE TO COPY AND USE
Awareness Posters – Flyers – cards
Car Stickers – FaceBook state Ribbons
Tof etc
Print off at Home
Supporting parents with special needs education
Advising Parents on educational matters in England
VIDEO Page
Understanding with Video what being born unable to swallow means Ea-Tef – Tof-oa
She is 17 and attending Wingate university
Lillie was born with EA/TEF in her words living, life with this
School Meals Form
Written for Ea-Tef & Oa-Tef by a Mom and Former Teacher
New Groups From around the World
Groups run by Parents For EA-TEF – TOF-OA Feingold
Dr. Steven Rothenberg Thoracic Surgery at its Best
Saved baby born prematurely at just 23 weeks unable to swallow
Stories from Adults and Parents
Ea-Tef – Tof-oa Stories from around the world
For NEW Parents to Read
This page has been set up for Parents of Pre Birth to Babies, to help you understand
Gastronomy and Tubes a Few helpful tips
Understanding Fundoplication and Gastronomy and Tubes etc
Ea-Tef and Tof-oa
Testimonials
This site provides a valuable resource to patients and families who have EA-TEF & TOF-OA and associated anomalies. Not only does it provide information on diagnosis and treatment, but it provides valuable insights and networking for patients and families who may feel isolated or lost in dealing with the complex issues they may face. It is a great resource to get information and support.
Another Testimonial
Happy to endorse the site. It is a great service to patients, families and caregivers of children with complex esophageal and airway anomalies. You have created a wonderful virtual community for people to gather and share the frustrations, challenges, and victories associated with living with esophageal atresia.
Another Testimonial
Soy testigo del grandioso esfuerzo que ha hecho Steve de conjugar una enorme información para la orientación de la comunidad mundial de familias y de niños nacidos con AE y FTE . No existe otro espacio en el
Mundo que llene tanto vacío existente alrededor de este gran problema , convirtiéndose en el sitio por excelencia para renacer la esperanza de madres y familias desesperadas , convirtiéndose en esa tabla de salvación para conocer , orientarse y tomar las mejores decisiones .
Gracias Steve y Sue por este gran aporte a esta necesitada comunidad.
Posted by a UK Mother
This was posted in a group by a Mother from England talking about Stephen Wyles.
Dated 25th -07-2019He didn’t know me but when I reached out in desperation because my baby was born with oesophageal atresia and trachea oesophageal fistula, he was there.
He helped me learn about a whole new world.
Every day we chatted via messenger.He gave me hope and assured me I was doing a good job.
Steve your nana would be so proud.
Nearly 2 years on and we are still in contact.Hopefully one day we will meet X
