After the delivery of our baby Jeffrey, I failed to notice his abdominal breathing. My husband, Randy, possessed both an eagle eye and the presence of mind to ask the doctor and nurses about it. No one on duty seemed concerned, perhaps because Jeffrey had arrived two weeks early.
A few days later, I was holding Jeffrey when my father called to check on us. As our new little one pulled to a standing position, I commented to Dad that it looked like he was going to be as strong as Matthew and Katie, his older siblings.
He never pulled up again.
Two months later, Jeffrey’s abdominal breathing, weak cough and cry, and lack of movement were attributed to spinal muscular atrophy (SMA). According to the pediatric neurologist, he would be gone before turning 4.
The geneticist halved that projection. She said quietly that most babies with type 1 don’t see their second birthday.
Matthew’s son, James, just turned 2. He is a dynamo in all ways, keeping us on our toes not only with his perpetual motion, but also with his language skills, manners (“pease,” “tan-koo,” and “sawry”), and unwavering patience in tower building. He has memorized our most beloved stories, and especially delights in reading his favorite line in “Don’t Let the Pigeon Stay Up Late!” (“I not tired!”). He can’t resist running, jumping, and skipping whenever and wherever he can.
He loves construction vehicles, but when his big sis, Clara, calls for assistance in the play kitchen, he’s right there. He loves his wheels, but he loves his “Sissy” more.
James is a bright, sturdy little fellow with a full-fledged gusto for life. He has an easy, slightly mischievous grin that reminds me of my dad, and an incredibly generous heart (usually!). His bear hugs are the best.
Because they looked so much alike as newborns, I can easily picture Jeffrey in James’ place, doing all of the above. He just couldn’t do it here.
James seems to be doing enough for both of them.
Jeffrey’s diagnosis of a “severe case of the most severe type of SMA” meant that our assignment likely would be brief. No one suggested it would be uneventful, though, and with good reason. While there were moments of sanity and even laughter, unforgettable highlights were neither sane nor humorous: firing up the suction machine for the first time, watching Jeffrey fall into respiratory arrest three times within a very short span, his teary balking at the subsequent BiPAP machine, and the increased episodes of respiratory distress as SMA took the final lap.
Watching our sweet guy struggle to breathe was the worst.
In March of last year, James developed a croupy cough. Recommended at-home treatments did nothing. After an official diagnosis of croup, he was prescribed a regimen of oral steroids and breathing treatments.
During the wee hours of April 1 (April Fool’s Day and a Monday), James’ breathing became a mix of labored and shallow, with stridor. Arriving early at the pediatrician’s office, blood was drawn for testing. He was diagnosed with severe croup and given steroids by injection and a breathing treatment. He was closely monitored.
Neither office treatment helped, so the doctor instructed Matthew to take James to the nearby hospital. As there was no time to make the 60-mile round trip home, Matthew took James — and Clara and me, both tagging along out of necessity — to the hospital. When our daughter-in-law, Jill, arrived, Clara and I went home: fun time for her, wild imaginations for Randy and me.
Thinking about our sweet grandson’s struggles to breathe was a terrifying blast to the past. And I hated not being able to relieve his exhausted, worried folks.
The little patient returned home two days later. When he awoke from a nap with a fever exceeding 103 and a return of shallow breathing, his weary folks were instructed to take him immediately to Brenner Children’s Hospital, 90 miles away. It surely felt like 9,000.
Brenner, a teaching hospital, was where James would receive more sophisticated treatment that would help turn things around.
Brenner also was where Jeffrey had been diagnosed almost 22 years earlier. That visit turned things around as well, but in a vastly different way.
James is fine today, and I believe wholeheartedly that Jeffrey is, too.
I have a feeling that they’ve met.
I also have a feeling that James is not the only one running, jumping, and skipping.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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