Our Unexpected but Blessed EA/TEF Journey

by Jan 17, 2018Advocacy, Special Needs Parenting6 comments

A blessed EA/TEF journey? Who could possibly say such a thing? Guest blogger and new EA/TEF mom, Kristen Horton, that’s who.  She’s participating in EA/TEF Awareness Month by sharing her story with Different Dream readers today. Enjoy! 

Our Unexpected but Blessed EA/TEF Journey

The Anticipation

In mid-February of 2017, I took a pregnancy test. It said “pregnant,” and our lives forever changed. Over the next 8 months, the prenatal appointments went perfectly: the harmony test revealed no chromosomal abnormalities and the sex (a boy), no hypertension, or gestational diabetes.

However all that changed when I was at 33 weeks, 6 days into our “babymoon.” We were vacationing in Florida, and all was fine when unexpectedly my water broke five hours from home. We decided to drive as far as possible to be home for a premature labor. Thankfully, God’s plan was to delay my labor just long enough for us to be admitted to our home labor/delivery ward prior to our son’s arrival. I spent 24 hours in labor. Our son came out perfect, weighing 5 pounds, 9 ounces. He was 19.25 inches long, and born at 34 weeks and 2 days gestational age.


The Shock of Diagnosis

In the span of a day, I experienced the best and worst moments of my life. One minute my baby was in the nursery, and the next he was transported in an incubator to a Level IV NICU at a hospital 30 minutes away, while I remained where I was for 2 more days. The diagnosis was esophageal atresia with tracheoesophageal fistula (EA/TEF). My perfect baby boy’s esophagus had formed improperly, and he could not eat without surgery. At 3 days old, he had an EA surgical repair. Thank God he had Type C EA/TEF, the most common and simplest to repair. Prayers were answered on surgery day, as well as a week later during the swallow test. After 18 days in the NICU, we were home!


The Stricture

All appeared to be going well, until he turned 6 weeks old. He was fine on Friday, but by Tuesday he couldn’t eat anything without choking. Then I experienced the most terrifying day of my life; my newborn son stopped breathing. I started CPR in my living room, praying to God that he would breathe again.  Again, prayers were answered, and God brought my baby back to me! This convinced me that every parent must know how to do CPR on an infant.

Later in the emergency room, a severe stricture at the repair site was discovered. The surgeon performed a balloon dilation to widen the site. The surgeon said the first dilation was “gnarly,” but also successful in widening the site. Four additional dilations later, the surgical procedure only takes 10 minutes total. Our son will probably need to visit the hospital at least 3 or 4 more times. Therefore as his parent, I will do whatever it takes to give my son a mostly normal life so he can eat “real” food in the future.

Even now, while I sit typing at the Children’s Hospital during our latest overnight stay, I am thankful that our baby has come this far. He’s now able to eat 4 ounces at a feeding, and we are blessed.

 

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By Kristen Horton

Kristen Horton lives in Georgia with her husband, Nathaniel, son, Christopher and dog, Winston. In 2010, she received her Bachelor of Science in Electrical Engineering from Clemson University in 2010 where she participated in the ROTC program and was commissioned as a Second Lieutenant. She holds a 2012 Master of Science in Electrical Engineering from the Air Force Institute of Technology. Since her son’s birth, she’s made it her mission to ensure that he receives the best care possible while she becomes as educated about EA/TEF as she can.

6 Comments

  1. Jolene

    Jana, thank you for introducing us to your son. I’m so glad to hear he is healthy, happy, and TALL! Jolene

  2. Jana

    My water broke at 30 weeks but I didn’t go into labour. I was put on bed rest for a month and then they decided to induce me. My son weighed 4 lbs 13 oz. . He was moved to the Children’s Hospital the day after he was born and had surgery the next day. Type c with no other abnormalities. He stayed there for 3 weeks. He never needed a dilatation and was able to eat normally other than throwing up a LOT. Usually every meal, so I had to feed him twice each time. He’s 25 years old now! He’s doing great and TEF hasn’t been an issue or a thought in our lives since he was about 3 (other than his TEF laugh and cough). He’s 6’4′ and handsome:)

  3. Kristen Horton

    Donna, it’s amazing how it just makes you tear up reading stories like this. This is our story (literally) and it makes me cry every time I re-read it.

  4. Jolene

    How is he doing now, Donna?

  5. Donna Johnson

    Makes me tear up as us to had no idea our little guy had the same issues. But he wasn’t repaired til 3.5 months old

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  1. Our Expected but Blessed EA/TEF Journey: A Year Later | Different Dream Living - […] to believe that it was a little over a year ago that I wrote my first blog about our EA/TEF…

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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