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Apr8WedWith the love of his family, the support of his church and the dedication of medical specialists, a young boy battled a killer heart condition. April 8, 2015 by Diane Stark
So much pain and brokenness, Lisa Anstey reflected, as she held the necklaces in her hands. The necklaces were comprised of coloured beads received as part of the Bravery Beads program at the Hospital for Sick Children (SickKids) in Toronto, in which children can collect a different bead for each medical procedure they go through.
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They represent each child's unique journey through treatment. The necklaces in Lisa's hands belonged to her son, Jacob, who had already been through so much in his short life.
Lisa grew up in The Salvation Army—her parents, Majors Rene and Wanda Loveless, are the pastors at St. John's Temple, N.L. In August 2004, she married Jon Anstey and in January 2009, they became the proud parents of a baby girl named Georgia.
In 2012, the couple discovered they were expecting again. They didn't anticipate any complications, but a routine ultrasound told a terrifyingly different story.
“Your baby has a rare heart defect called double inlet left ventricle,” the specialist at Janeway Children's Health and Rehabilitation Centre in St. John's said to them.
“What does that mean?” the couple asked.
“Basically, your son only has half of his heart,” the specialist replied. “He may not survive long enough to be born.”
He went on to describe the odds of long-term survival and the many complicated surgeries their baby would face. “Sixty percent of couples whose babies have this diagnosis choose to terminate the pregnancy,” the specialist concluded.
Lisa and Jon immediately insisted that termination was not an option.
“That day is forever etched in my mind as one of the most painful days of my life,” Lisa says. “But I chose to remember that God is in control. I knew that if I lost sight of that, this journey would be too much to bear.”
A few weeks later, Jacob was diagnosed with another heart condition called complete heart block, which disrupts the signals between the chambers of the heart and prevents the atria from beating in rhythm with the ventricle. “With this additional diagnosis, our pediatric cardiologist told us to prepare for the worst-case scenario,” Lisa says. “It was devastating.”
A Little Fighter
Jacob was born on April 4, 2013, via caesarean section at SickKids in Toronto. “He weighed eight pounds, five ounces, and he was beautiful,” smiles Lisa. “It made the diagnosis seem that much more unfair and impossible to understand. How can a baby who looks so perfect on the outside be so sick on the inside?”
Jacob underwent his first open-heart surgery on April 9, and there was a 20-percent chance he wouldn't survive. “Handing Jacob over to the nurses in the operating room was one of the hardest things I've ever had to do,” Lisa says.
The surgery lasted eight hours and went well, but the next day, his reconstructed archway developed a kink, and a second emergency heart surgery was necessary. This procedure successfully repaired the archway, and a third surgery later implanted a pacemaker into the 20-day-old baby.
Over the next several weeks, Lisa and Jon endured a roller coaster of emotions. Jacob's condition would improve and then deteriorate, then improve again. Throughout, Lisa clung to the Bible's Psalm 46:1,7, which says, “God is our refuge and strength, an ever-present help in trouble.... The Lord Almighty is with us; the God of Jacob is our fortress.”
Her pastor introduced her to another encouraging verse that also included her son's name: “You are my King and my God, who decrees victories for Jacob” (Psalm 44:4), a reference to the biblical patriarch.
“It seems Jacob was a good name for our strong little fighter,” Lisa says. “Despite the setbacks and scary moments, we knew we had prayer support coming from all over the world.”
Mending a Broken Heart
After spending the first 56 days of his life in hospital in Toronto, Jacob was finally returned home to Paradise, N.L. While Lisa, Jon and Jacob were in Toronto, four-year-old Georgia stayed with Lisa's parents. “Being away from home, and especially away from my daughter, was incredibly difficult,” remembers Lisa. “I was glad to be home.”
When Jacob was five months old, he and his parents returned to SickKids for a third open-heart surgery, where his pacemaker was replaced with a larger one with a longer battery life. Lisa's own heart aches for her little boy's suffering. “Time and again, I have looked to God's Word for strength,” she says. Her favourite verse is Psalm 147:3, which says, “He heals the brokenhearted and binds up their wounds.” At first, Lisa clung to this verse for the physical message, but now, she says, “My focus on that verse has shifted from physical healing to thankfulness to God for healing my own heart, which was broken by the emotional trauma of Jacob's diagnosis. I've come to understand just how God was present in this journey.”
Jacob is now an active and happy toddler, with verbal skills advanced for his age.
Today, when Lisa looks at Jacob's bravery beads, she doesn't just remember the pain and suffering they represent. “Each bead was a stepping stone to the miracle of God bringing Jacob to this point,” Lisa says. “His broken heart has been patched, and each day is a gift from God.”
At the time of Jacob's diagnosis, the family was attending The Salvation Army's St. John's Citadel, N.L., but in September 2013, they transferred to St. John's Temple in order to be closer to their family. “The prayer support and spiritual encouragement from both churches has been ongoing since day one,” Lisa says. “Jacob remains on prayer lists all over the world.”
The churches have offered financial support as well. “Our church family has held multiple fundraisers to help us through the financial hurdles that travelling for Jacob's care has presented,” Lisa goes on to say. “Whenever Jacob hits a rough patch, we know that we have a whole community rallying around him and lifting him in prayer. It makes a world of difference.”
(Photos: Courtesy of the Anstey family)