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My son was born with esophageal atresia. He is the reason why I started this blog. I want to help other families with my recipes, tips, and natural remedies.

my story esophageal atresia

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.

my story esophageal atresia

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.

my story esophageal atresia

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.

my story esophageal atresia

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 esophageal atresia 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.

my story esophageal atresia

If you have a child born with esophageal atresia 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 other EA-TEF families sharing my recipes and ideas. This is the reason why I started a page on Facebook and now this blog.

my story esophageal atresia

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.

my story esophageal atresia

Categories: My Story, Tips & Advice

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25 Responses so far.

  1. evelyn says:

    Nice post!!thanks for sharing¡¡My firts son had a serious stomach reflux until more and less he was 3 years old..so i can understand a little bit what you lived ….we really needed perseverance ^^but thanks of that disorder the whole family changed feeding habits..so now all of us eat more healthy! ..you have to have another baby to see how easy is feeding babies..sorry for my english .greetings from Perú

  2. Anna says:

    I was happy to see your site posted on the EA/TOF Noises FB page! I’m always looking for new ideas for my 16-month old son (also born with EA/TEF). He gets food stuck often and if he has a cold or any extra mucous, the sticking happens even more. I look forward to more good stuff from your posts!

  3. I will try. Thank you for the recommendation!

  4. Elena Castañeda says:

    Hi, My name is Elena, I am fron Peru in South America, I have a 12 years old boy, Mateo, who was born like your son with EA/TEF. Mateo has reflux and I want to ask you about the aloe vera, I¨v never give him that. How I get that, pills or natural, dosis, please I want everythig natural to end reflux. Thank you for your time. Elena

    • Hi Elena, I am also from Peru! About aloe vera, I buy it fresh and blend it with smoothies (fruits and veggies). Have you tried giving your son probiotics? Look for a good brand and if possible in liquid form. The dosage will be in indicated according to your child’s age. Ginger is also fantastic for reflux! If you want, please subscribe to my blog (the first box in the main page) and you will receive weekly updates including smoothie recipes and other fun food ideas. I am going to post an anti-reflux smoothie recipe soon so that you get an idea of how I incorporate the ingredients. If you have any other questions, please let me know.

  5. Ashley says:

    Thank you for sharing! My son is still in the NICU, but I anticipate him facing many of the same issues your son did. So I’m happy to get some information, recommendations, and ideas ahead of time.

  6. Sue Paul says:

    Hello, my name is Sue Paul and I commend you on what you have accomplished on top of being an EA/TEF mom, a wife, mother to others, and scheduling for a family with multidisciplinary needs. I am the wife of a 46 year old husband born with long gap esophageal atresia. He also went through several pediatric surgeries and after a thorough management of his condition as a child he did not experience many issues until he was in his thirties. I would look forward to further chat with you when you might have a minute or two to spare. Thank you for sharing your story it was informative and inspiring.

  7. […] 7 Natural Remedies That Will Get You Through Cold And Flu Season really work for us. Please see My Story for more […]

  8. Kristi says:

    I’m so glad I found your blog! My son was born earlier this year with EA/TEF. It was so scary at first, and we really had no idea what to expect. Thankfully, he is doing really well now.
    We are just starting to feed “solid” foods (he is still a baby, so they are really pureed foods), but I can’t wait to try some of your ideas as he keeps growing!

  9. Kamin says:

    I want very thank you for this article. My son have the same sicknes. Now he have 1,2 yare and we still fighting for his health. You make my day!

  10. Aparna says:

    Hello komal.. R U from India??

  11. Aparna says:

    Is Ur baby diagonised with vacterl?

  12. AY says:

    Hi, Am a Nigerian, my son had a same birth defect, but due to the condition of my country, no standard equipment to carry out the surgery and they suggested a Gastrostomy tube feeding. They carry out the operation I mean the Gastrostomy tube feeding, but he passed on the following morning after a very high temperature……. this is very painful….but…….

    Thank God for the life of your son. Am happy for you.

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