The Purple Ribbons of Perseverance: How Does EA/TEF Affect the Patient’s Daily Life?

We all know that each individual looks different on the outside. But some babies look different on the inside, too. Yearly, one in 2,500-4,500 children are born with esophageal atresia and tracheoesophageal fistula. This is a condition that causes abnormal development between the esophagus and stomach. There are 5 different ways the anatomy of the stomach and esophagus in an EA/TEF patient can look. 

A full EA/TEF includes an abnormal separation between the stomach and esophagus (food pipe) and an abnormal connection between the esophagus and the trachea (windpipe). However, sometimes there may be only the separation or only the connection. Sometimes, there is even a double connection or a connection at the top instead of the bottom. Though there are a number of ways this condition can present itself physically, there are an infinite amount of ways it can affect patients mentally and emotionally. No EA/TEF experience is the same. 

Many EA/TEF patients develop heart or lung problems and have weaker muscles or lower physical ability. Babies who stay in the hospital for an extended period of time, particularly from a very young age, miss out on critical physical milestones due to the environment in which they are developing. Lying still for a long period of time with many tubes and other obstacles prevents babies from moving around as much, and as a result of this, it is difficult for babies to learn to move properly. Additionally, various respiratory and cardiac problems can cause patients to be limited in their physical ability. Physical and occupational therapy help increase strength and ability in patients experiencing such difficulties. Because of these factors, physical ability is an obstacle for many EA/TEF patients. 

Some also need the aid of feeding tubes or certain food restrictions to grow because of their delay in eating. It can take a while for EA babies to be able to eat and because of their digestive systems, they may have trouble eating and swallowing, so they use feeding tubes and medications to boost their growth and help them learn to eat at their own pace. One final example of the effects of EA/TEF is reflux. EA/TEF digestive systems do not develop property before patients are born, and even after surgeries, their systems do not work the same as that of other people. As a result, it may take patients longer to digest their food after a meal, and sometimes they experience reflux. Digestive reflux means that food, drinks, saliva, or other fluids swallowed are not fully digested, so they come back up. Some people spit up after eating because of this. Spitting up may seem similar to throwing up, but the fluid never reaches the stomach, it does not contain bodily acids or chemicals, and it does not mean the person is sick. Reflux occurs in people with EA/TEF after meals, and if it collects acid, it can cause heartburn. However, reflux and spitting up alone are not signals that a patient is sick and are not contagious. Patients use pillows and wedges to help them digest their food at night and avoid reflux. They may also take medication for heartburn and acid reflux. 

EA/TEF is not contagious, it is something someone is born with caused by an underdeveloped digestive system. Accommodations such as physical and occupational therapy, feeding tubes, medications, and special pillows or wedges can be helpful, but they are not always necessary. And the examples above are not the only side effects or treatment options. EA/TEF affects each individual in their own way. Those with medical differences deserve to be seen as individuals, and receive support in a way that makes them comfortable. If your friend has a medical condition, ask them what they need from you, and let them know you are there for them, as a helper but also a friend. Respect people for who they are, not what they look like, what their medical file says, or what they do or don’t want help with.

And remember: very few people are educated about EA/TEF. But spreading awareness and supporting the EA/TEF community does not end here. It has just begun.

For more information check out the article titled The Purple Ribbons of Perseverance