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Lessons from the heart

Posted: December 17, 2018


Lessons from the heart


For an engineer, East St. Paul's Jessica Vokey knows a lot about the heart muscle.
 
She was a structural engineer in training when her second child, Hendrix, was born three-and-a-half years ago with a heart condition.  It put Vokey, her engineer husband Justin and the rest of their family on a quest to learn as much as they could about the newest family member's heart and how they could make life for everyone the best it could be.
 
"He's single ventricle, double outlet, right ventricle," Vokey said about Hendrix's condition, before putting it into layman's terms.
 
"Basically, in a sense, he was born with half of a heart ... His left side of his heart never developed.  I try to explain it to people that way, that he was born with half of a heart."
 
And perhaps the most important thing they've all learned since Hendrix was born is that despite his diagnosis, he probably has more heart than most.
 
"You would never know that there is anything wrong with him," Vokey said.
 
"He has more energy, he's happy as can be, he has a great understanding of the fact that he has a boo boo heart and he shows it off.  He's aware of it, he talks about it and I think that's a big part of it.  He's special for a special reason ... He's done good.  (He has) more feist."
 
The Vokey's learned at 23 weeks and four days into the pregnancy about Hendrix's heart condition and had three days to decide what to do.  They were told it was very serious, and he may not survive.  He would definitely require the first of three essential surgeries within 24 hours of his birth.
 
They were advised to terminate the pregnancy, she said, and with one daughter already at home, the couple was faced with a gut wrenching decision.
 
"Me and Justin talked, we didn't know what to do ... we had three days to make the decision," she said.
 
"We talked, and thought if you stop it now, you'll always say what if?  If we have one day, we had one day, if he didn't survive the second surgery, we had him for six months.  (We decided) we might as well give him a fighting chance."
 
Hendrix was born at Health Sciences Centre in Winnipeg and immediately flown to Vancouver for surgery.  His second surgery, again in Vancouver, came at six months, and Vokey said he's been a trouper through all of it.
 
His third surgery will be in Vancouver in January or February, and some pre-op stuff was done at HSC in Winnipeg recently.  Vokey wondered how Hendrix would handle the poking and prodding now that he was older and more aware.  She needn't have worried.
 
"He was cooperative, he was ok to be there," she said.
 
"It surprised me like crazy, how much he can pull it together at the right time."
 
The third surgery should be the final one, but Vokey said there could be "small interventions" after that, and if things go wrong, Hendrix would be put on the transplant list.
 
"The three-part surgery, it's not a fix, it's a palliative care type option for these children," she said.
 
"Up until 25 years ago or 30 years ago there wasn't an option for these children, they just didn't make it.  Now they've come up with this three-part surgery that has people living to their 20s and 30s."
 
The travelling to Vancouver is difficult, but Vokey said with the help of family they make it work.  Their family has grown, with Hendrix and older sister, five-year-old Kennedy, being joined by 17-month-old Navy.
 
Grandparents help out and for the first two surgeries, after two weeks in Vancouver they reunited with Kennedy. They'll do the same this time, sticking with the motto that two weeks apart is long enough.
 
It's a stressful situation, but Vokey said it's made the family stronger, and she's always surprised by the care and concern others have for families like hers that have kids with health issues.
 
"You get stronger as you go along," she said.
 
She acknowledged that until you're knee deep in a situation like this, it's hard to understand, but you learn so much about who you are, how strong you can be and how much heart a little guy can have.
 
"Since we've had Hendrix, the situation was so negative but there's been so many positives that have come from this negative situation," Vokey said.
 
"I remember the day he was born and thinking I can't believe (terminating the pregnancy) even crossed our mind.  It hasn't been easy but it's been positive enough that there's been enough good things to come out of it that I wouldn't change a thing in the world."
 

Picture:  The Vokey family, left to right, Jessica, Hendrix, Kennedy, Justin and Navy

 

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