Wheeler: A family gives thanks for a special change of heart
11/22/2012 12:00 AM
03/31/2015 12:11 PM
With every pump of blood that colors previously blue lips pink, that travels to weakened legs now walking with ease, that restores a young life that was perilously close to ending, the heart inside Lucas Santos’ slim chest whispers in its two-beat rhythm: Thank you. Thank you. Thank you.
Thank you to a grieving family that chose Nov. 5 to donate the heart of a loved one newly lost.
Thank you to Duke Hospital medical workers for 52 days of tender care.
Thank you to God for protection throughout a journey that began 17 years ago when Lucas was born with a heart defect and his parents, Simone and Larry Santos, were told he likely wouldn’t survive.
“God has done great things, and we give him the glory,” Simone says with a smile that never leaves her face. “It’s been amazing how this process unfolded. God provided.”
What the Santos family of Cary is praying that God will provide on this Thanksgiving Day, however, is comfort – comfort for the family of the unknown person whose heart saved their sweet boy.
“I’m so thankful that in the middle of the pain they were going through, they brought life to my son back,” Simone says. “It’s a deep appreciation that’s hard to put into words. I think of the donor’s family every day and pray that God comforts them.”
‘In God’s time’
For more than a decade, the Santos family could almost pretend nothing was wrong with Lucas. With medication, the defective valve in his heart – called an Ebstein anomaly – rarely made its presence known.
Lucas played baseball and basketball. He swam. He rode his bike happily through his neighborhood.
But at age 13, his developing teenage body became more than his heart could bear. Doctors replaced the faulty valve and inserted a pacemaker.
A heart transplant, they said, was inevitable.
“I actually realized enough not to focus on it,” Lucas says shyly from a recliner in Room 5310, his Duke Hospital home from Sept. 25 until Nov. 15. “I just always thought, ‘It’ll come in God’s time.’ Whenever God wants me to go through this, let it be.”
A gradual deterioration preceded the full-blown crisis that landed Lucas at Duke on that Tuesday in September.
After he was forced to give up sports, Lucas had turned his limited energy to making music, developing a deep love and appreciation for its restorative powers.
“It’s very soothing for me,” he says, ticking off piano, guitar and trombone as the instruments he plays. “I listen to all kinds of music, symphonic bands, jazz bands. It just gives me a warm, good feeling.”
What he enjoys the most, though, is marching with his fellow Imps in the Cary High School Band.
During his freshman year, Lucas was able to maneuver through the formations carrying his beloved trombone.
By the next year, his energy was waning. He could participate only by playing percussion in the fixed-place pit.
How to pray
This year, his junior year, he was too weak even to raise a mallet. Forced to sit out the season, his failing heart was also broken.
By Sept. 25, he couldn’t move his legs.
“His lips were blue. He was having severe chest pains,” Simone says. “When I described the symptoms to his doctor, she said, ‘Pack and go to the ER. Now.’ ”
For what do you pray when your child is dying and the only thing that will save him is another person’s heart?
“This is a bittersweet thing,” Simone says. “I started thinking about people needing to be open to being donors. Eventually at some point, everyone will go through this, death. I just prayed that people will become donors.”
“I just prayed this heart would be the perfect heart for me,” he says, pointing to his chest. “And I prayed that He’d be with the family. I knew someone would have to lose somebody, so I prayed that He’d be with them in their time of grief.”
For six weeks, the family waited at Duke for news that a suitable heart had been found. The days that Lucas’ doctor had said “were numbered” kept dwindling.
“God kept me steady,” says Lucas, who politely answers questions with “Yes, Ma’am” in a sweet and serious way. “I knew this would happen when He wanted it to. I felt a lot of comfort, and I knew a lot of people were praying.”
On Monday, Nov. 5, the family got word that a heart – not just an adequate heart or a good heart but a “pristine” heart – was available, and the transplant began.
Monday became Tuesday as Simone and Larry waited with friends from Cary’s First Baptist Church for 12 long hours because Lucas’ old heart – scarred and enlarged – was difficult to remove.
Then, three hours after the surgery ended, Lucas was back in the operating room because of excessive bleeding. The next three days he spent sedated so that the new heart could be under less stress.
“Through this whole process, I’ve felt a peace that surpasses all understanding,” Simone says, quoting Philippians 4:7. “It was a tough journey, but I feel the peace. I don’t think I ever stopped smiling because of Lucas’ situation. God put a smile on my face.”
No greater gift
Today, a week after Lucas’ happy homecoming, Simone will be wearing that smile back to Duke as the family takes gift bags and cards of gratitude to those spending Thanksgiving in Unit 5300.
“God’s put me through this for a purpose,” Lucas says. “That purpose could be to testify to other people. I want to encourage other teenagers.’”
And to encourage everyone to become organ donors.
As I visited with Lucas and Simone at the hospital, Amy Daulton, Duke’s pediatric heart transplant coordinator, popped in – a fortuitous moment that Simone said was God winking at us.
“If they’re sitting on the fence, just come walk around with us one day at the hospital and see the miracles every day,” said Daulton, her eyes filling with tears. “There’s no greater gift that one family can give to another human being than life.”
She turned to Lucas and Simone and praised them for their family bond, for their positive attitude, for their resilience.
“It gives me chills right now just thinking about it,” Daulton said. “We as professionals don’t share our emotions as much as we should, but I’ve cried many tears at home for you, Lucas, tears of hope and joy.”
There is a time to weep and a time to laugh, a time to mourn and a time to dance, Ecclesiastes tells us. With organ donations, the gamut is ours.
Next fall, when Lucas Santos lives his dream of returning to the field with his Cary band friends, he will march to the beat of a drummer. But it will be to the beat of a stranger’s heart that he will forever dance.
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