Relating to the mama bird that’s afraid to blink

As an SMA parent, I know what it's like to be always on the alert

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by Helen Baldwin |

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My husband, Randy, and I celebrated our 12th anniversary in 1986, eagerly awaiting the arrival of our first baby the following month. In addition to eating healthily and walking regularly, my job as a teacher of children with orthopedic and multiple handicapping conditions provided constant action. My maternal instincts were ready for the real test!

Matthew was born three days before his due date in the middle of summer. Exhaustion from new parenthood — especially after resuming teaching duties — defied description, but I loved it. Placing the bassinet beside our bed made it easy to check on him frequently during the night. The first time Matthew slept longer than usual, I awakened in a panic until I could see his chest rise and fall, over and over.

Three summers later, our second baby was due. Baby Katie dallied eight days past her due date, necessitating my unintended presence at teacher meetings in the stifling mid-August sauna that was Columbia, South Carolina. And whereas the labor and delivery for Matthew was relatively calm and predictable, labor with Katie meant “NOW!” as I seemingly skipped right to the pushing part (she arrived 10 minutes after we checked into the hospital).

Katie’s dramatic entrance provided a fitting grand finale to our family expansion. It was complete!

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A move, a surprise, and a whammy of a shock

In the final hours of 1995, our family shifted some serious gears and moved to the magnificent mountains of North Carolina, smack dab in the midst of cow pastures, wild turkeys, and Christmas tree farms. After we stopped pinching ourselves, living in a slice of heaven required little adjustment; we were blessed and knew it.

Less than 18 months after our move, we received a bonus blessing with a third — and surprise! — pregnancy. The only holdover baby item was the crib Matthew and Katie had used, but my optimistic self felt confident that I’d be ready.

Jeffrey was beautiful and a dream baby, adoring everyone in the family almost as much we adored him. He had such an easy temperament that I pondered what we’d done to deserve such good fortune!

Not once did it occur to me that there might be an explanation for our little guy’s “cute” cough, weak cry (when he did cry), sleep during almost every nursing session, and wiggle-free reaction during diaper changes. Matthew and Katie were healthy; nothing to the contrary regarding their baby brother was on my radar.

The diagnosis of spinal muscular atrophy (SMA) when Jeffrey was 2 months old gave “blindsided” new meaning.

Empathizing with a mama bird

We are privy to all kinds of wildlife in our rural surroundings. The birds are particularly entertaining and can be noisy. Sometimes they carry on until it sounds like we live in a jungle.

Several support posts on our old farmhouse have just enough space at the top for a bird’s nest. The nest most frequently (and currently) claimed sits on top of the column closest to our primary door. The panes in the door’s upper half render this location an easy way to watch all the goings-on; however, when mama bird is in the nest, she’s always on the alert. Our peeking out the door’s windows, not to mention turning the porch light on at night, spooks her off her perch to supervise from afar until she deems it safe to return.

I’ve never seen the nesting mama bird with closed eyes or remotely close to a relaxed state. My heart aches for the exhaustion I imagine she must feel in her quest to keep her babies safe. She seems afraid to blink.

I know that feeling. After the pediatric neurologist knocked most of the props away with the SMA diagnosis, he finished the job with the prognosis: probable death by 4. I couldn’t blink; the tears were gushing too fast and furiously.

Downward spiral of SMA and being afraid to blink

Over the next few weeks of our active SMA duty, this insidious disease chipped away at Jeffrey’s ability to suck, swallow, and move, and we found ourselves in increasingly precarious situations. On one errand, Jeffrey’s mouth opened with no sound coming out, like a fish out of water, gasping. Myriad frantic efforts accomplished nothing, but a diaper change worked. Two weeks later, I opened the car door to get him out of his seat after errands and noticed he was turning blue. I thanked God for the suction machine.

Then there was respiratory arrest and an overnight hospital stay after a pulmonologist’s unfortunate experiment, followed by Cheyne-Stokes breathing patterns (slow breaths, slower breaths, no breaths, repeat), followed by failure of the generous morphine and suctioning protocol to provide any comfort.

There wasn’t much sleep, and as the inevitable end to this assignment loomed, I, too, was afraid to blink. The thought of Jeffrey’s final breath was unbearable enough, but I didn’t want him to take it alone. And he didn’t.

Try to rest, sweet mama bird. You don’t always know what’s coming.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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