SERIES PART 1: TRACHEOESOPHAGEAL FISTULA – OUR PERSONAL STORY – NICU THROUGH TWO

PREGNANCY AND DISCOVERY

***Please be advised. This story contains medical descriptions.

When our son was born with a pair congenital defects called tracheoesophageal fistula (simply known as TE Fistula or TEF) and esophageal atresia, we had no warning. My husband and I found out the day he was born, and we were offered little more than surgical plans.

Desperate to know what this diagnosis meant for our son’s future, we scoured the internet for real-life stories. What we found couldn’t even be considered a hand full, but they were our life-line.

With hopes of providing peace to families who are, or will, find themselves in a similar situation, I am sharing our story through a series of posts called, Tracheoesophageal Fistula – From NICU to Two

If you, your child, or loved one has gone through this diagnosis, I encourage you to comment, ask questions, and share your experience. Your stories matter.

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My pregnancy was riddled with complications. I begin our story here because many of these complications disguised themselves as common conditions that do not indicate TEF. Looking back, it is now clear that I had a very specific combination of factors resulting from our son’s defects.

In my second trimester, I was diagnosed with a case of placenta previa. Initially, the condition was described as mild enough to correct itself. So when I began hemorrhaging at twenty-six weeks, it surprised me and my OB.

Needing constant observation, I was prescribed hospitalized bedrest. While hospitalized, I had numerous ultrasounds. None of which detected TEF.

As my pregnancy progressed, I also began leaking amniotic fluid. Although concerning to my doctor and nurses, I had an unusually large volume of fluid, so they assured me our baby was safe.

The danger of too much fluid, however, lies in the fact that it can cause the uterus to expand too fast. This expansion caused my placenta to begin detaching from my uterine wall. This detachment caused my bleeding to become more frequent. And my frequent bleeding led to an emergency C-section at 34 weeks.

In utero, babies practice swallowing by “drinking” amniotic fluid. TEF meant that our son’s esophagus did not connect his mouth to his stomach, so he could not practice this developmental step. This lack of practicing caused fluid to build up, and led to severe bleeding. This is the warning that was missed.

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I was anesthetized for my emergency C-section. Due to risk of severe bleeding, I could not have a spinal block and my epidural made me sick. Not being numbed enough, I felt the first cuts into my abdomen, and I begged to be put under.

The first thing I remember after waking, was a nurse telling me I had a beautiful baby boy with sandy blonde hair. She was kind and smiling, and assured me that I could see my baby soon.

Though feeling hazy, it didn’t seem too long before my husband was allowed to enter post-op. Joined by a nurse (or two) we were brought to our son. Still laying in my hospital bed, I was wheeled through the halls to the NICU. I remember feeling disappointed that I wasn’t awake to greet my son, but so excited to hold him for the first time.

Being wheeled in on a bed drew attention, and I was uncomfortable feeling every eye on me as we entered the NICU. But then I saw him. Lying on his tummy, in his incubator, beautiful as could be.

Because of my complicated pregnancy, we knew he would be premature. We were previously prepped by NICU nurses, and his IV, mass of cords, and beeping monitors didn’t scare us. But I still remember shaking while reaching through the incubator hole to touch his sweet baby back as gently as possible. I remember telling him that he was perfect.

There was a full team of nurses surrounding us and our baby. A few in scrubs, and one in office clothes. Given the circumstances, the amount of people didn’t seem strange. But then the woman in office clothes started talking.

I am paraphrasing today, because the next several minutes were honestly a blur. But she said something to the effect of, “We need to talk. There has been an unforeseen complication.”

Her face was serious. Her words were frightening. Still recovering from anesthesia, her words came at me as fractured bits and pieces.

“You can’t hold him right now.”

“We couldn’t get a feeding tube down his throat.”

“He needs more tests.”

“Tracheo…fistu…”

“He’ll need an operation.”

“We don’t know… We don’t know… We don’t know…”

“Time to go back to your room. The surgeon will be in to see you.”

With only moments to spend together, I told my son I loved him, and he was still perfect. Then, confused, heartbroken, and expecting the worst, I was wheeled back to the maternity ward without him.

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For TEF SERIES PART 2: DIAGNOSIS AND DESCRIPTION, visit:

https://believableshe.com/2021/06/08/series-part-2-tracheoesophageal-fistula-from-nicu-to-two/