EA/TEF Awareness Month: Call Me a Romantic

by Jan 26, 2015Advocacy, Special Needs Parenting6 comments

If you’ve visited DifferentDream.com lately, you know January is EA/TEF Awareness Month. Once again, the parent of a child with this condition will share her family’s story. Guest blogger Maggi Gale’s story is one of global proportions as you will soon see.

EA/TEF Awareness Month: Call Me a Romantic

Call me a romantic, but I had pictured the scene months before the baby had arrived. My mental picture was based on our sunny, Saturday afternoon visit of the maternity ward in the East African Government hospital. I would sit in the corner of the room in a low chair, cradling the baby. Then her dad and sister would arrive. Phoebe would hold her little sibling for the first time.

Being well acquainted with life in Africa, it seemed natural to stay for the birth, rather than uprooting our family to stay with family or friends back in the United Kingdom. Sure, the hospital wasn’t exactly state of the art, but this wasn’t my first baby and I’m made of fairly tough stuff. So my line of thinking went.

Ah, yes, the scene I visualized was sweet and cozy.

EA/TEF Awareness Means Facing What Really Happened

So what really happened? Reality was a far cry from my daydream. After a long labor, my daughter Lois was born without a cry. She was whisked away as I lay waiting for stitches. But why did I detect a determined, rather fixed smile on the midwife’s face?

And what was the pediatrician doing in the room? “There’s nothing to worry about, Mrs. Gale,” he began.

Instinctively I knew that he was wrong, and my world had changed forever.

That evening, a doctor friend had come to visit. Although she didn’t tell us, she wasn’t comfortable with the diagnosis. After seeing Lois, she went home to do research. The next morning she came back to chat with the pediatrician, explaining she was a doctor with pediatric experience.

From that point on, we were on a roller coaster. The doctor wasted no time in advising us. “You need to leave the country. Go to South Africa or the United Kingdom.” I walked out of the hospital on automatic and caught a taxi home to pack. As my husband decided on the UK, organized flights, accommodations, and an ambulance, I mechanically seized the scissors and cut the sleeve off baby gowns so that Lois could wear them with her drip in her arm. Despite my stitches, I flung suitcases around and packed for us all.

EA/TEF Awareness Means Letting Go of Preconceived Ideas

The only question on my mind, the only question that mattered was, “Will she make it?” We had arrived at the bottom line, oh so suddenly, oh so unexpectedly. All emotions were suspended as my spirit continually cried, “Please God, just let her live.”

I wrestled with my preconceived ideas. It wasn’t supposed to happen this way. We were the blessed ones, the ones God showered his grace upon. So what was this? Where had we come to? I didn’t know this scary place.

Back in the UK just 48 hours after her birth, our surreal experience began to be given names, forms, and explanations. The surgeon sat down with us and explained that Lois had been born with tracheoesophageal fistula (TEF), a condition which affects one in 3500 babies. For some unknown reason, her esophagus had not been properly formed. The top part stopped short of her stomach. The bottom part, came from her stomach was somehow attached to her windpipe. Consequently, she was totally unable to swallow or make any sound.

Surgery was absolutely essential, but the full extent of her problem couldn’t be known until she was opened up. There were many variations of TEF. Some requiring a single operation. Others requiring multiple surgeries. No guarantee of success was offered, either.

EA/TEF Awareness Means Dangling in Space

So, on the afternoon of May 26th, 2003, we perched on our friends’ settee, but  we were not really there. Emotionally, we were dangling in space. Waiting hour after long hour for a call from the hospital to tell us if the operation was a success. That call eventually came. Words can’t convey the feeling of relief that swept over us, that allowed us to breathe again, feel our bodies again, and slowly begin to come out of automatic mode and to process what had happened, emotionally and mentally.

EA/TEF Awareness Means a World Changed Forever

Yes, my world changed forever, when my daughter was born. Along with my visual image of those first few days being shattered, some of my preconceived ideas were also shattered. What had gone wrong?

It took me some time to understand that it nothing had gone wrong. It had just gone differently. My preconceived ideas had been wrong. My assumptions of what God, in His grace, allows His children to experience had been wrong. The remarkable thing was that He is with us in it, as He demonstrated in the coming weeks, months and years of our EA/TEF experience.
But that’s another story. Or, perhaps, more than one.

Questions about EA/TEF Awareness Month for Maggi?

Do you have questions for Maggi about EA/TEF or their family’s experience? Leave them in the comment box.

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By Maggi Gale

Maggi is British, but currently lives with her family in the Middle East where she is an art teacher.  She is wife to Russell, and mother to Phoebe and Lois.  She has spent many years in Africa, and it was there that EA/TEF baby Lois was born.  Many life lessons were learned through the experience of bringing up Lois in a beautiful but often challenging environment.  Over the past few years, Maggi feels she has come up for air and rediscovered some balance in life.  However, she is vividly aware of the path others are still treading.  Therefore, she longs to encourage others through the challenging circumstances of raising chronically ill children. 

6 Comments

  1. Wendy

    Thanks for sharing this. My son has a genetic condition and a simple cold just had us in ICU last week at the amazing Children’s hospital 8 minutes from our home. Reading this was such a reminder of the comfort that we live in…even though it feels difficult.

    Your Lois sounds like an amazing girl!

  2. Jolene

    Jonathan, what Maggi said is so true. The first years with an EA/TEF baby are so hard, but it gets better. My son had months of dilations as a baby, and his cough remained for several years. Eventually it went away. He’s now 32, married, a daddy, and living a full life. But I remember how long and dark the first few years of his life seemed. They were the longest years of my life. As Maggi said, hang in there. It gets better!

    Jolene

  3. Maggi Gale

    I’m so sorry to hear what Leia has been through. I don’t want to whitewash anything – it was very tough for several years for Lois. But she is a now a strong 11 year old girl. Yesterday she was in a swimming gala, and her team won! The cough has completely gone in Lois’s case, for which I thank God very much. Keep supporting your daughter and facing one day at a time. There really is light at the end of the tunnel.

  4. Jonathan

    My daughter Leia is turning 2 in May and was born with a TEF, major surgery when she was born (I wasn’t there I was overseas, active duty Air Force) but when I got to her and we moved to a new base in Florida the fistula had reoccurred and had another major surgery followed with countless dialations so it’s been rough, how is your daughter now? Does she still have that cough?

    Jonathan

  5. Jolene

    It’s easy for those of us who have parented EA/TEF kids to forget that it’s not widely known. I’m glad EA/TEF Awareness Month reached you, Sylvia!

  6. Sylvia Phillips

    Wow! What a harrowing start to life for precious little Lois! I had never heard of this condition until now! Thanks for sharing your story with us!

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

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