MISCOUCHE – “Will that be me?”
CJ Studer remembers asking himself that question over and over again.
He was sitting beside his infant daughter’s incubator at the time, listening to the various mechanic beeps and buzzes in the background of an Edmonton, AB, hospital’s neonatal ward.
He was thinking about the family who’d been in that same room not 24 hours before. They were so excited to finally be bringing their own baby boy home for the first time.
CJ got news that day – the family’s baby had died that night.
So he wondered, “will that be me?”
“Some moms are happy. Next day, mom has lost her kid. And we’re in limbo,” he said, recalling back to that night, more than eight years ago.
For whatever reason – call it an act of God, providence, blind luck or a miracle of medical science – that reality was not something CJ had to deal with that day, nor four years later when he found himself right back there again.
The Studer family of Miscouche is CJ, Kim and their three children: Aisling, 8, Deirdre, 6, Seamus, 4. They are this year’s Heart and Stroke Foundation of P.E.I.’s Heart Month Ambassadors.
February is heart month on P.E.I., a time when the Heart and Stroke Foundation will be canvassing for its cause and raising awareness of good heart health.
The Studer family did not hesitate to put their own story forward when asked to do so for this campaign.
Besides just wanting to do something for what they see as a good cause, they take issue with the old assumption that the Heart and Stroke Foundation is a charity that only benefits older people who suffer heart attacks.
It’s just not true, said Kim.
Two of their three children were born with congenital heart defects. So they can, and do, attest to that.
“It’s because of Heart and Stroke Foundation and the research they do and the advances their research and funding have provided that made it possible to do heart surgery on tiny little newborn babies,” said Kim.
“It’s saving lives right now. Lives like crazy little things like this,” she added, affectionately combing her fingers through Aisling’s hair.
Indeed, the family has been the recipients of more than their fair share of the fruits of that organization’s labours.
Kim and CJ discovered something was wrong with their first pregnancy when they went for their 20-week ultrasound.
Doctors noticed something abnormal with their baby’s umbilical cord; they sent the Studers to the IWK Hospital in Halifax so a specialist could take a closer look.
It was discovered that their fetal daughter had a problem called hypoplastic left heart syndrome, meaning the walls of the left side of her heart are thicker than they should be. This in turn makes her heart chambers smaller than normal, causing a problem with the beating of the muscle.
The Studers had to fly to a hospital to Edmonton when it came time for the birth so they could be near specialists.
But it quickly became apparent that there was more wrong with the baby than doctors originally thought.
“Just because one heart problem isn’t enough,” said Kim.
Aisling had a coarctation, which is a narrowing of the aorta.
That required open-heart surgery.
That was tough, said CJ.
“When she had her surgery … I don’t know what was wrong with my stomach, but I had to take Pepto-Bismol because I literally couldn’t walk (the stress pain was so bad),” he said.
Aisling pulled through, and three months later the family returned home to P.E.I.
Then she developed a blood clot in her leg, requiring her parents to give her daily injections of medication.
It was a rough ride for a couple of first time parents, said Kim, though they had nothing to compare it to at the time.
“We didn’t know any better. To us, that was standard. We had nothing to base it on, so you just did what you had to do, because we had no choice,” she said.
A couple of years later, the Studers had Deirdre without incident.
“We couldn’t believe it. Day three, you leave the hospital, the baby doesn’t have to be plugged in,” laughed Kim.
Their doctors had told them that Aisling’s condition was extremely rare, basically a fluke, so a couple of years later they had a third child.
But again, doctors noticed something in an early ultrasound. And again it turned out to be hypoplastic left heart syndrome.
They repeated everything all over again. Seamus even had a coarctation like his sister, requiring an even more delicate version of the open-heart surgery she’d had.
It was difficult to deal with, said CJ, but at least they knew what they were getting into the second time around.
“Yeah it was hard, but I didn’t need Pepto-Bismol to walk this time,” he said.
With two out of three children born with heart conditions the Studers put the brakes on that large family of four or five kids they’d wanted.
They couldn’t risk going through that again, they said.
But thankfully, they’ve made it through OK so far.
Seamus and Aisling are healthy, though they make regular visits to their cardiologist for checkups.
Their long-term prospects are good – though there is always the risk of complications.
But CJ said, he just keeps hoping that the kids will make it one more day without having a problem – because that’s one more day of research and technological development that could help them survive.
Anyone who’d like to know more about the Heart and Stroke Foundation, or Heart Month, can go online to www.heartandstroke.pe.ca.