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

 

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. 

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:- birth-defect@outlook.com 

 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

For American Residents only

Dear EA/TEF and OA/TOF Community,

We would appreciate your insight on a new project!

The Birth Defect Team at www.birth-defect.org is participating in partnership with the Castleman Disease Collaborative Network (CDCN) and the Chan Zuckerberg Initiative. The goal is to understand 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’d like to join us in this important work, please click the link below to complete the survey as a patient, loved one of a patient, physician, or researcher.

  • ly/repurposingsurvey
  • Expected duration: 15-20 minutes
  • Deadline: October 26, 2021.
  • A Spanish version is available / Hay una versión en español para pacientes

If you have any further questions, please contact project lead Ania Korsunska at ania@castlemannetwork.org or check out our website https://cdcn.org/roadmap.

Thank you so much for joining us in this effort to revolutionize drug repurposing!

Best Regards,
Sue Paul and Steve Wyles

Additional Background: 95% of the ~7,000 rare diseases do not have a single FDA-approved therapy. Since incentives for new drug development for rare diseases are limited, drug repurposing provides a promising way to identify effective treatments for rare diseases faster and cheaper. There are many treatments out there which could be useful for many rare diseases, but to date, there has been no systematic effort to gather such a large and diverse data set of information and experiences, and no centralized resource exists that can help guide drug repurposing. With your support, we can help create it! You can read more about the project here: https://cdcn.org/roadmap

Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One project is committed to uniting these communities in their quest for cures.

FOR MORE INFO ON THIS CLICK HERE

Castleman Disease Collaborative Network Survey (birth-defect.org)

Ea-Tef and Tof-oa

Testimonials

quote

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.

– – Doctor / Surgeon Steven Rothenberg - Rocky Mountain Hospital for Children 2001 N. High Street Denver, Minimally Invasive Surgery at it's best

Another Testimonial

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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.

– – Dan von Allmen, Professor of Surgery, University of Cincinnati

Another Testimonial

quote

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.

– – Dr Cristobal Abello MD Pediatric Surgeon Master in Pediatric and neonatal MIS and Terapeutic Endoscopy Profesor of Pediatric and Surgery North University and Metropolitan University of Barranquilla Colombia. Scientific and team director of the CMIpediatric International Clinic of Barranquilla Colombia

Posted by a UK Mother

quote

This was posted in a group by a Mother from England talking about Stephen Wyles.
Dated 25th -07-2019

He 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

– UK Mother