Cam-do attitude: Infant stroke survivor on the reboundMOORHEAD – Camdyn Backer’s silence was terrifying. At a time when most parents lament that their babies are too fussy, new parents Alicia and Les Backer wanted nothing more than to hear their newborn son, Camdyn, cry.
MOORHEAD – Camdyn Backer’s silence was terrifying.
At a time when most parents lament that their babies are too fussy, new parents Alicia and Les Backer wanted nothing more than to hear their newborn son, Camdyn, cry. At least that would mean he was responding to his environment and communicating like any other newborn.
Instead, Camdyn was heavily sedated by anti-seizure medication after experiencing a stroke, either right before or shortly after birth. During his stay at the St. Mary’s Hospital and Mayo Clinic in Rochester, their infant son barely opened his eyes or made a sound for days at a time.
So when their baby finally started protesting needle sticks, his whimpers sounded like music to his parents’ ears.
“We were so relieved to hear him cry,” says Alicia.
A few weeks have passed since then, and Camdyn is doing much better. You would never guess his short life started out so dramatically. He has begun to show the faintest sheen of gingery-blond hair atop his head. He has dark blue eyes, which follow people around the room.
Yet there are many unknowns to face. Doctors can’t predict if he’ll have lingering effects from the stroke. It’s possible he could have seizures for the rest of his life.
But for now, the family is happy to be back home in Moorhead with their son.
“He’s back to acting like Camdyn,” Alicia says.
‘We knew it wasn’t good’
Camdyn entered the world May 14 weighing 7 pounds 4 ounces. He was normal in every way, his parents say.
They named him Camdyn because “that’s the only name we could agree with,” Alicia says, smiling.
“It’s a strong name,” Les adds. “It fits him, that’s for sure.”
Just married this winter, the couple was excited to have a new baby together. Les says they already had a “Brady Bunch” family: He is divorced and has three kids – Jonathan, Isabella and Tyson – and Alicia has a daughter, Josie Peterson, from a previous marriage.
“He had a lot to compete with, so I suppose he decided to come in with a bang,” jokes Alicia.
But at 7 days old, Camdyn’s behavior changed drastically. He began vomiting. He became listless and sleepy. And his skin turned pale, almost yellowish.
“Camdyn had no interest in eating or even waking,” the Backers wrote on Camdyn’s CaringBridge website. “He was a completely different boy from the first few days of his life.”
Concerned about possible dehydration and Camdyn’s irregular breathing, the couple took him into the emergency room. Doctors, suspecting stomach problems, ordered blood tests and a chest X-ray.
The Backers wondered why their son didn’t cry, even when nurses drew blood.
Still, the tests revealed little. Doctors concluded he was slightly dehydrated and sent him home.
At home, Camdyn got worse. He had to be force-fed. He was lethargic, “with a sort of emptiness in his eyes,” Les wrote on the website.
Then the baby began having seizures – short, terrifying episodes in which he drooled out of one side of his mouth, turned his head to the right and jerked his left arm in involuntary muscle spasms.
It was “something you never want to see anyone experience, especially for your own child,” Les says.
Doctors ordered a battery of tests, including an ultrasound of his head.
“When the doctor came in, shut the TV off and sat down, we knew it wasn’t good,” Alicia says.
The ultrasound showed a “bleed” measuring 2 to 2½ inches across on Camdyn’s right frontal lobe. The doctor recommended he be airlifted to Mayo Clinic in Rochester.
The next few days were a blur of sleep-deprivation and stress, Les says. At Mayo’s St. Mary’s Hospital, Camdyn was sedated, intubated and injected with contrast dye for an MRI. The MRI showed that bleeding on Camdyn’s right frontal lobe was caused by venous infarction – a stroke.
Infant brains resilient
The Backers learned that if this type of stroke had happened to an adult, it could have been massive, even fatal.
But Camdyn’s very young age saved him. The soft spots in his skull allowed for fluid build-up without putting too much pressure on his brain.
The plasticity of his still-forming brain also will compensate more easily for any areas affected by the stroke, Alicia says.
Doctors attribute the stroke to either an arteriovenous malformation – a tangle of abnormal arteries and veins – or an extremely rare spontaneous bleed.
Strokes are more common in infants than most people realize. In an interview with USA Today, Dr. Donna Ferriero, chief of neurology at the University of California, San Francisco, said the peak incidences of stroke occur in infancy and old age. According to the National Stroke Association, strokes occur in 1 of every 4,000 births.
Unfortunately, infant strokes often aren’t diagnosed until many months later because infants can’t communicate problems and lack muscle coordination anyway, Ferriero says.
In Camdyn’s case, Mayo doctors weren’t sure when the bleed occurred – it could have even happened before delivery.
Over the next six days, doctors monitored Camdyn to see if his brain would begin to reabsorb the blood.
Many expenses to face
In that time, Camdyn received two blood transfusions for low hemoglobin and electroencephalograms (EEG) to check for abnormalities in the electrical activity in the brain.
Alicia says it was scary watching him be hooked up to dozens of electrodes for an EEG, but even worse when they took him off the breathing tube. “I couldn’t even watch it,” she says. “It was so scary not knowing if he would be the same Camdyn we know.”
After a six-day stay, Camdyn was finally responsive and stable enough to go home.
Since then, his life has been fairly normal, although he takes liquid iron for low hemoglobin and the anti-seizure drug phenobarbitol daily.
So far, he shows no neurological deficits, his parents say.
They are relieved that the part of his brain affected doesn’t typically affect motor skills or intelligence. According to the Center for Neuro Skills, the frontal lobes oversee functions like emotional control, personality and facial expression.
A recent checkup and follow-up MRI at Mayo showed promising news: The mass on his brain is stable, and possibly even shrinking.
The little boy now eats and sleeps like he should. And he is calm and good-natured, even when being fed his strange-tasting medications or covered with kisses by his effusive 4½-year-old sister, Josie.
Alicia says Camdyn’s mellow demeanor is fine with them. “We already have one drama queen,” she says, as a boa-wrapped Josie flits and dances around the room.
One area where Camdyn will have to catch up is in size. At 5½ weeks old, he weighs just 8½ pounds. But Alicia says he loves to eat and is starting to form the first traces of baby fat on his legs.
Camdyn’s medical scare has also put extra financial strain on the family. Les says they’ve racked up $50,000 in medical bills.
They have health insurance at their jobs – Les is a general manager for Compliance & Safety Services in Fargo, and Alicia is a physical therapy assistant for Med-Plus Healthcare in Moorhead.
Still, they suspect there will be plenty of expenses ahead.
At this point, the couple is just glad Camdyn is home and doing so well.
“We’re taking it day by day,” Alicia says. “The little things in life don’t seem so stressful now. This has given us a whole new perspective.”
If you go
- What: Camdyn Backer benefit, including full meal, silent auction, bake sale, karaoke and face-painting for kids
- When: 4 to 9 p.m. July 30
- Where: Moorhead VFW, just north of Highway 10 between Moorhead and Dilworth
- Info: Freewill offering. To donate items to the silent auction, call Miriah Sannes at (218) 790-3252. Send monetary donations to Camdyn Backer Benefit Fund, First National Bank, PO Box 688, Hawley, MN 56549.
Readers can reach Forum reporter Tammy Swift at (701) 241-5525