I have a beautiful and healthy six year old son who was born with a rare birth defect called Esophageal Atresia with Tracheoesophageal Fistula (EA/TEF). It is a disorder of the digestive system in which the esophagus does not develop properly. The esophagus is the tube that normally carries food from the mouth to the stomach.
Esophageal atresia is a congenital defect, which means it occurs before birth. There are several types. In most cases (like ours), the upper esophagus ends and does not connect with the lower esophagus and stomach. The top end of the lower esophagus connects to the windpipe. This connection is called a tracheoesophageal fistula (TEF). Some babies with TEF will also have other problems, such as heart or other digestive tract disorders. Thankfully, our son did not have any other major abnormalities except as a baby and toddler he had a lot of reflux and respiratory problems. Esophageal atresia occurs in about 1 out of 4,000 births.
I didn’t know he had it until the day he was born. A few hours after delivery, the doctors confirmed it and my son had surgery to reconnect his esophagus properly at only 2 days old. We stayed in the hospital for about two weeks and then we were sent home with lots of positive thoughts from doctors that our son will develop normally but will need constant monitoring with food. Doctors also mentioned his trachea was very soft because they had to cut the upper connection he had with the esophagus so we should be prepared for lots of respiratory illnesses and a constant barking cough.
At about six months of age, my son started showing signs of reflux so we had to go to a specialist who prescribed reflux medication. He had to take this medication daily and according to the doctor: for life! His reflux was pretty bad and the medication seemed to help, so we had to buy the idea he will probably be on this med for the rest of his life. At about 9 months of age he got sick for the first time and was diagnosed with bronchiolitis. He recovered in about 5 days but his cough lingered for about 2 weeks. After that bronchiolitis episode, he started getting sick often: fevers, respiratory infections, and a barking cough that seemed to never go away! We were at the doctor every 2 weeks! We will always come out with more and more medications: broncho dilators, steroid treatments, antibiotics, proton pump inhibitors, and pain relievers.
This is when I started to think about ways to boost his immune system and find natural alternatives to cure his reflux and his numerous respiratory problems. I started researching and investigating about nutrition. I then started making my own purees most of the time instead of the processed baby jars. Homemade baby food is twice as nutritious! I started looking into natural ways to cure reflux and when my son turned 1, I started giving him ginger and aloe vera.
We were also constantly dealing with stuck food episodes. My son used to get food stuck in his esophagus all the time. He no longer wanted to eat baby food, he was so tired of eating everything in a puree consistency, so we had to cut everything small into tiny tiny pieces. Vegetables, fruits, and meats were always a problem. We needed to pay close attention to his nutrition to optimize his health. Getting fresh fruits and vegetables into his diet was a challenge because of his difficulty swallowing. His reflux was not getting better and we had to use albuterol and steroid treatments constantly.
Thankfully, my wonderful husband believes in cooking with fresh ingredients and he started looking into ways to prepare healthy meals other than purees, so that my son could manage and enjoy without getting them stuck. He used to make souffles all the time, blending vegetables and meat so our son could eat them without problems. We used our slow cooker a lot because it makes meat tender and vegetables extra soft. I also started giving him fruit and veggie ice pops with added ginger, raw honey, probiotics, and aloe vera for his reflux. Little by little we came up with new ideas as he grew older, like the veggie nuggets, homemade chicken nuggets, and other recipes and ideas I share on this blog. I also made a list of Best Products For My EA-TEF Child and EA/TEF Best Kitchen Tools , check it out!
Now that he is six he can eat a great variety of food without any problems. Little by little he improved in the things he could eat; his esophagus grew wider and his trachea got stronger. We are so happy and thankful with his progress! He still gets food stuck once in a while when he forgets to chew well, but he handles it like a champ. We will always need to closely monitor his esophagus but we are hopeful that with time, he will be able to learn his limitations and eat everything.
He also grew out of his terrible reflux and has not taken any medications since he was 2.4 years old. We need to monitor it with periodic reflux tests but so far, natural remedies are working. Respiratory problems are also history. He has not needed a broncho dilator or steroid treatment in over 1.5 years! He doesn’t get sick often anymore and when he does, he recovers faster. Of course the “TEF Cough” is still present when he gets sick and lingers for a while, but it is something you just have to deal with when you are an EA-TEF survivor.
We do not know what other challenges we will have to face in the future, but we feel a lot more confident because we have an amazing Pediatric Surgeon, Dr. Burnweit, (who saved Matias’ life when he was only 2 days old) and we know that a healthy lifestyle will make a big difference in his development. We take it day by day, enjoying watching him eat things he couldn’t handle in the past, and being thankful for our happy, strong, and healthy little boy.
If you have a child born with EA-TEF you will know how to stay strong and positive. It is not easy, my son has to see more than 5 specialists periodically to monitor his development, but so far he is growing healthy without problems.
I am a huge believer in natural medicine and nutrition. After extensive research and life experience, I truly believe we can improve and most of the time overcome health problems with a natural approach. My husband and I also became more conscious about the foods we eat. We wanted to set the right example with our own food choices, so our son will eat the same meals. As a result, we now eat more vegetables and fruits than we ever did before!
I want to inspire more people to eat healthy and help EA/TEF families sharing my recipes and ideas. This is the reason why I started a page on Facebook and now this blog. Please also see my EA/TEF Resources Page for more information.
Please see My Story Update. If you have an EA-TEF child be hopeful, it gets better. We are now a happy family of 4. Our son reminds us how fortunate we are every single day.