Hand to Hold's Official Blog: Written by Parents for Parents

Advice from a Former TEF Preemie, Now a Preemie Dad

daddy&JMy husband was a preemie and a special needs child. I guess I’d always known that, though I’d never applied “special needs” to anything to do with him. After the birth of our third child, however, I saw that part of my spouse’s past in a new way.

My husband was born as a late term preemie with a tracheal esophageal fistula (TEF). It was a birth defect that required surgery when he was still very small. The repair of that birth defect, and the resulting scars and damage to his lungs, is to this day his self-described Achilles’ heel.

My son was born four months early. He had six surgeries before he left the hospital, and earned a feeding tube a few months later. He, like his father, struggles with chronic lung issues.

My spouse wrote the letter below as a preemie dad and a former preemie. He writes about his continuing struggles, and his perspective on those struggles. He writes to give hope and perspective. Enjoy.

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Dear Parents,

When you are in the midst of the uncertainty of caring for a young child, especially one with a complicated medical history, it is hard to know how to dream about your child’s future. It is frightening to imagine all the worst possibilities, and it seems unrealistic to imagine a “normal” life. Perhaps my story will help you picture the future with some optimism.

When I was born, premature, my mother discovered that I seemed unable to eat, choking up any small amount of food that I was given. It was quickly discovered that I had an incorrectly formed trachea and esophagus, and was brought immediately to surgery. I almost died there,  a small child being sewn together correctly by careful surgeons. My condition (treatment?) was labeled a tracheal esophageal fistula. In order to feed me, they inserted a G-tube. I spent a month in the hospital healing and learning to eat before I went home.

After leaving the hospital I remained a medically fragile child. At one point I stopped breathing and was rushed back to the emergency room. For much of my young life I choked on food so often that the Heimlich maneuver became a part of our normal dinner routine. At age 5 and 6, I became repeatedly sick, racked by normal viruses which would settle into my lungs and be diagnosed as pneumonia, only to reoccur again and again after antibiotics.

It was only when I was brought back to the pediatric pulmonologist that treated me as an infant that we started to get some answers. I had something like asthma due to damage to my lungs from the ordeal at birth. Medication could keep the symptoms under control, and I would have to be especially wary of sickness, since most minor illnesses would settle in my lungs.

For much of my way through school I was a chronically ill child. For a period I was going to school for half-days in 4th grade simply to get more rest, and even into high school and college, I would have periods of serious pneumonia that would set me back for months.

Today, I am a 33 year old college professor, married, with three children. I make a couple of annual visits to a pulmonologist, but otherwise I am a relatively healthy adult, able to enjoy any physical or social activity that I choose. In retrospect, the path to this “normal” life was challenging, but it was a challenge borne most heavily by my parents.glasses

Here is the odd thing: I never thought of myself as a special-needs child, or as particularly afflicted. My parents used to say that everyone had something difficult to deal with, and for me it was my health. No big deal. I slowly learned to recognize the warning signs. I learned to avoid cigarette smoke at all costs. And I learned to be proactive when illness inevitably hit. In short, I slowly learned to manage my own health. Today, my health issues are so minor a part of my life, that only my family and closest friends know any of this story. Not because it is a secret. It just isn’t an important part of who I am.

Two summers ago, my medical history came rushing back to us, as we had a son who was also born premature. While his condition was far worse, our scars, from surgeries at an impossibly young age, match. His breathing challenges and concerns about infection are similar to mine. And so I found myself able to uniquely understand my son. I could tell what he was experiencing when he got sick. We knew how to control his environment, because I had managed these issues my whole life.

And now, remembering my childhood, I understand what my parents did for me guiding me through the tumultuous childhood. I realize that their good attitude and optimism shaped my own attitude, and empowered me to look past my medical challenges and just live.

There are many parents and children that have to deal with medical issues that are far more serious than mine, and many will not ever outgrow their health struggles. For many though, as they grow up, they will learn to manage their own health, and throw themselves into projects, relationships, and jobs that end up being far more important than their health history. That is what I dream of now, for my own son.

Best,

A Preemie Dad

Laura Maikata About Laura Maikata

Laura Maikata (MI) is mom to three fantastically unique children, the youngest of whom was born at 23 weeks due to preterm labor. Within months of finishing a MA in Teaching English to Speakers of Other Languages (TESOL), Laura found herself as a student, instead of teacher, of a different kind of foreign language – the language of medical professionals. In the NICU her son, nicknamed "JAM." had surgeries for a PDA, NEC and AP-ROP. More on JAM's tenacity for life can be found on Laura's blog or on Twitter.

Comments

  1. I was born in England in 1962 with TOF = TEF I run an awareness website for this condition which has gone world wide and has the support of USA leading Dr’s
    http://www.steve-tofs.com I am very interested in making contact The Dad who is TEF and who’s Son is as well.
    Many Thanks
    Steve wyles

    • Steve,
      I am sorry if it wasn’t clear in this post, but our son was not born with a TEF. He was born severely premature, and so he has BPD which is like his dad’s TEF lung issues. Our son also has oral adversion from being intubated for months. He has a scar near his belly from having his bowels resected that matches his dad’s surgery scar. He bears a scar under his left arm from a heart repair (PDA ligation) that mirrors his dad’s scar under the right arm from the TEF repair. If you’re still interested in chatting with us, let me know.
      Laura

  2. My son was born with a TEF w/ atresia. They knew at birth that he may have this due to the lack of fluid in his stomach during sonograms. He is 5 now and has swallowing issues. (He was also diagnosed with Down Syndrome at birth). His diet choices are very limited. I was wondering if you or your parents had any advice on that issue. I am on a waiting list for feeding therapy but in the meantime…….
    Thank you for sharing your story!!

    • Meghan, unfortunately, our experiences with TEF probably don’t help much. When my spouse had his TEF repair, not much was done in his small town for feeding therapy. Not much was known about post-TEF issues. It took nearly a decade for them to figure out how to deal with his chronic lung issues. As a result, he was a skinny kid, and he choked often. As alluded to in the post, choking was a nearly daily experience. His dad perfected the heimlich maneuver and would sweep him in to another room to perform it so his mother didn’t notice. He didn’t come home with a gtube, so oral feeding was his only option. Feeding therapy was never mentioned to them.

      I am sorry I cannot help more. Have you seen the EA/TEF website? I am sure that they would be much more helpful than our thirty-years outdated experience!

  3. pingback: http://www.eatef.org/node/53 and http://www.facebook.com/eatef.org

    Thanks for the inspiring words!

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