When an EA TEF baby is born, so is an EA TEF parent. Different Dream is ending EA TEF Awareness Month with a post from Kamaile Hiatt. She’s the mother of Kanani, born in 2001. Kanani’s EA TEF was diagnosed and repaired on the day of her birth. Today Kamaile tells about her rebirth as an EA TEF parent and what’s she’s learned in this new role and new life.

An EA TEF Parent Is Born

I’ve had a recurring thought that we typically congratulate families, focusing the attention one the new babe, when in reality, with each new child born, so is a new mother and a new father.

An EA TEF Parent in the Early Years

With Kanani’s early arrival, our lives were completely up-ended. Not only were we first time parents, we learned within hours that we were brand-new-first-time-parents-of-an-infant-with-immediate-medical-needs. What a scary prospect that was.
Within hours of delivery, our new infant daughter was transferred to the neonatal intensive care (NICU) because her oxygen levels kept dipping. Her EA TEF was discovered when they tried to suction her and the suction tube would not go down as far as normal.

Not knowing any better, we assumed that the surgical correction when she was one day old would be a minor speed bump. Business, our lives, and our family would proceed as usual. We would carry on without a care in the world. Looking back, recovery from the corrective procedure seemed straightforward. But Kanani’s feeding and growth was problematic from the start and proved to be chronic. We sought the advice of a feeding clinic and they recommended g-tube placement. After carefully looking at our options and long term goals, we decided to follow that recommendation in hopes of eventually establishing good oral eating habits.

When Kanani was four months old, we learned her esophageal tissue was not as robust as is seen in healthy children. She suffered an injury during surgery when her paper-thin esophagus tore. The second repair to her esophagus took considerably more time to heal and additional stitching due to a pinhole leak that would not close.

An EA TEF Parent in the Toddler and Early School Years

One day, I watched Kanani let spit pour out of her mouth, not something she typically did. I gave her a drink from a water bottle and after a few swallows, the water came right back up. I waited a little while and offered her more water. When the same thing happened again, I took her in to the hospital. This was the first time we had something lodged in her esophagus above her repair stricture that required removal along with a dilation, or stretching of the stricture. From then on, she needed weekly dilations from October through December until food and liquid could pass without pooling and funneling through her narrowed scar tissue.

An EA TEF Parent in the School Years

Eventually the frequency of Kanani’s dilations slowed to once every six months, and then to once a year until she was eight. She had one foreign body removal at age 11, but the surgeon opted not to do a dilation due to the poor integrity of her esophagus. She will be 15 years old this year.

Future Expectations of an EA TEF Parent

We have learned the complications of repeated injury and chronic reflux early on means that Kanani has poor esophageal motility with flaccid and over-stretched tissue in the top half of her esophagus. In the lower portion, spasms that occur during peristalsis which can sometimes stop the movement of food down her esophagus.

We’re teaching her to take good care of her esophagus by sitting straight up when she eats and by chewing her food well so that she can reach adulthood with the her esophagus intact. There are not many options available if her esophagus continues to be injured.

On paper, this may sound tragic and scary and more. But, as a mother of a child with EA TEF, I have learned, and am continuing to learn how to be a good parent. I have learned that esophagoscopy and dilations are minor procedures. I’ve learned how to encourage good meal time behavior. My hope is to see her happy, eating a broad range of foods, intuitively and proactively using strategies to help food move through her esophagus so she is comfortable and healthy.

Your Response?

Depending on whether you are or aren’t an EA TEF parent, your response to Kamaile’s story is either one of instant familiarity or amazed bewilderment. Either way, your comments are most welcome in the comment box.

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