They were 200 miles away from their Charlotte home, staying in a sparsely furnished rental house with no decorations other than some cards taped to the wall. There were few presents, no tree, and holiday dinner was served on paper plates.
But Jane Coulter remembers that Christmas in 2011 as the best ever because Henry was with them.
He was nearly 8 months old, and he’d lived his entire life up to that point at a Charleston hospital, sharing his crib with a mass of tubes that helped him breathe and stay alive before and after his heart transplant.
The day before Christmas Eve, Henry was released. His parents – Jane and her husband, Carrington – took him and his oxygen tubes back to their rental to celebrate with Loulie, Henry’s twin sister, and Carrington’s parents. After months of watching Henry battle back after every crisis, it seemed as if their baby boy had been reborn.
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But two months later, Henry’s heart stopped. And Jane’s broke.
Each Christmas after Henry’s death, Jane would be gripped with anxiety, with a tightness in her chest and with a question that gnawed at her grieving heart: What great thing am I going to do to honor the memory of my son?
On this Christmas Day, as Christians celebrate God’s gift to a hurting world, Jane, now 36, finally has her answer.
‘Praying for you’
In the weeks leading up to Henry’s heart transplant in October 2011, Bird Anderson, a Charlotte banker who traveled a lot for Wells Fargo, started sending postcards of encouragement from around the country to the new parents, Jane and Carrington.
He didn’t really know them, but he felt a connection when he was told about their infant son’s struggle by a minister at Christ Episcopal – the Charlotte church they all shared.
Bird and his wife, Virginia, had a son, Tommy, then 16, who also had a heart transplant as a baby.
They reached out to Henry’s parents by phone. And then, on his business trips, Bird would pick up postcards at hotel guest shops, scribble “Praying for you” or “Thinking of you” and send them on.
When his words of support reached Charleston, Jane and Carrington would tape them on the wall of their rental.
On the day of Henry’s transplant, Bird felt compelled to do more than just write: Ready with a made-up story that he had to be in South Carolina on business anyway, he headed for Charleston’s Medical University of South Carolina.
There, in the waiting room, he found Jane and Carrington, both deep in “the zone” – Bird’s words for the intense focus parents can summon whenever their child is undergoing medical treatment.
As Tommy’s father, Bird had spent a lot of time in the zone.
Struggling for air
Tommy, the second of Bird and Virginia Anderson’s three children, had been born perfectly healthy in January 1995.
But by the time he turned a week old, he was running a fever. A spinal tap and other tests revealed that he had viral meningitis – an inflammation of the membranes covering the brain and spinal cord.
After treatment and a brief stay at a hospital in Atlanta – the family’s home at the time – Tommy seemed to be recovering. He was released.
But a few days later, his parents noticed his labored breathing. Watching him in his crib, they could see every rib as Tommy struggled for air.
By the next morning, back in the hospital, Bird and Virginia knew Tommy had a problem – a serious one – with his heart. The new diagnosis: myocarditis – a disease marked by inflammation and damage of the heart muscle.
After still more tests – EKG, heart catheterization, biopsy – Tommy’s cardiologist told the Andersons, then in their early 30s, that their 2-week-old son would need a heart transplant.
Shock. Fear. Prayers. Tears. Tommy’s parents knew it was real when the nurse came to see them – even she was crying.
They waited for more than seven weeks for a new heart, their prayers complicated by the realization that it would only come with the brain death of another child.
Babies die every day, their social worker told them. What you can pray for is that the family of that child will have the strength to make the choice to help Tommy live.
Then, one Friday night, as Bird Anderson was out picking up a pizza, his pager went off. It read “911” – their code. He whipped into a gas station, put a quarter in the pay phone, and dialed home. This is it, Virginia told him, they think they have a heart.
At the hospital, the surgeon told them he was flying off to somewhere in Virginia to get the heart. If it looked good, he said, he’d be back in a few hours.
Tommy’s transplant surgery started just after midnight at Egleston Children’s Hospital at Emory University in Atlanta. In the waiting room over the next four-plus hours, Bird and Virginia got updates from the nurses every hour – chest open, old heart out, helicopter landed, and – finally – Tommy has a new heart.
Prayers in her dreams
Henry’s story was different.
Jane and Carrington – she’s an interior designer, he’s a financial adviser – wanted kids but had difficulty at first. In 2010, they chose to have in vitro fertilization, and got pregnant – with twins. A boy and a girl.
At 11 weeks, they discovered something was wrong with one of them.
Doctors eventually told them that Henry would be born with hypoplastic left heart syndrome. Also known as HLHS, it’s a birth defect that leaves the left side of the heart unable to effectively pump blood to the body.
HLHS babies require surgery in three stages – the first soon after birth.
After doing some research, Jane and Carrington decided that Medical University of South Carolina would be best for their babies, who they knew would be born small and premature.
The parents-to-be found a rental house in Charleston, and on May 1, 2011, Jane went into labor and delivered Henry and Loulie. Three days later, her son, weighing 5 pounds, 2 ounces, underwent open heart surgery.
Just before the operation, Henry was baptized. The Rev. Lisa Saunders, who had driven down from Christ Episcopal, sprinkled his forehead with water from a Styrofoam cup.
Other surgeries and complications followed. Henry was a fighter, but he wasn’t growing and he couldn’t survive without the ventilator.
Through it all, Jane prayed with an intensity she’d never experienced before. Prayers even crept into her dreams.
But she stopped when doctors told her and Carrington that Henry would need a heart transplant. How could she pray that another child would die so hers could live?
Devastated, angry, losing faith, Jane explained her feelings to a cardiologist, who told her that making something good out of something awful was worth praying for. His words restored her hope.
As they waited, Henry’s condition worsened. His heart was failing, and it was getting harder for the hospital to reset its rhythm. His parents knew they were running out of time.
“Last night was very hard,” Jane wrote Oct. 12 on CaringBridge, a personalized website to share health information with family and friends. “We have always known we could lose him at any time but last night seemed to be the end. We said our goodbyes and waited. We hugged and kissed his little body. I held his little hand and tapped it on my face like Loulie likes to do. The doctor said he is living on the edge. We need to keep him as stable as possible and hope, hope, hope for a heart.”
It was during this low point that Henry and his parents got a visit from the Rev. Chip Edens, rector at Christ Episcopal. When he got back to Charlotte, Edens posted a photo of the sign in front of the Charleston hospital on his Facebook page, with the message: “We need a miracle here.”
Just hours after his visit, at 10:24 p.m. on Oct. 20, the call came, waking up Jane and Carrington. We have a heart, the cardiologist told them. A 2-year-old girl – known to them as Baby A – had died in a car crash in Kentucky.
The news was bittersweet. But soon, thanks to the generosity of another family, Henry had a new heart and what felt to Jane like a second chance.
Jane and Carrington expected their stay in Charleston to last maybe three to five weeks. It turned into nine months.
Soon after their perfect Christmas with Henry in 2011, they returned to Charlotte with the children.
They’d bought two fishing tackle boxes to separately store all of Henry’s medicines – including 30 different syringes. Jane never slept more than two hours at a time, getting up to deal with monitors, anti-rejection drugs, a feeding tube and an oxygen tank.
Meanwhile, Carrington, who was working full time, logged countless hours on the telephone, battling with insurance companies.
But every time they saw Henry smile, they felt grateful for the gift that had saved his life.
Those first weeks of 2012 also were a time for daily strolls in the neighborhood, for playtime with Loulie and her smiling brother, for getting love from grandparents, cousins, and the family dogs, and for capturing special moments in picture after picture.
Harried but happy, Jane and Carrington set about trying to get used to their new life.
They also grew closer to Tommy’s parents. By then, he had lived 16 years with his new heart. Jane would ask Tommy’s mom, Virginia, questions about ways to care for Henry and about whether this or that had happened with Tommy.
It also was clear to Virginia that Tommy’s success gave Jane hope that Henry, too, would grow up and thrive.
Then, on Feb. 29, 2012, during a routine test back in Charleston, Henry’s heart just stopped. As Jane watched, a roomful of doctors and nurses worked frantically to try to bring him back.
After saying goodbye to Henry many times, only to have him rally, this time he was gone.
Touched by Henry
Henry’s funeral service at Christ Episcopal Church drew several hundred people.
Many of them had never known Jane and Carrington but were touched by their son’s struggle and, like Bird and Virginia, had showered them with supportive cards, letters, emails and phone calls.
“I imagine Henry’s arrival in heaven,” Rev. Saunders told those gathered at the church. “God does not say, ‘Henry, why are you here so soon?’ but rather ‘Well done, my brave and loving servant. Because of your courage and prodigious will to live, because of the expert and devoted care you received, because of the persevering love of your remarkable parents, grandparents and extended family, because of the web of grace and prayers knit together by folks around the world, because of the selfless gift of Baby A and her family, you lived far longer than your body was equipped to do.
“You lived long enough to go home, to be cuddled and coddled, to sleep in your own bed, to meet your cousins, to feel the sun and wind on your face, to be licked by your dogs and, most wonderfully of all, to play and laugh and get bossed around by your twin sister, Loulie.’ ”
Tommy’s mom, Virginia, was out of town visiting family that day, but he and his dad, Bird, went to the funeral and stayed for the reception in the parish hall.
There, they made their way to the receiving line to offer condolences. When Jane saw Tommy, she collapsed in his arms.
Diagnosis: Another transplant
In the years since Henry’s death, Jane kept tabs on Tommy’s progress. Whenever Virginia would see her at church, Jane’s first words would be “Hi, how’s Tommy?” In him, she could imagine a grown-up Henry.
Tommy had carved out a good life, with a rich network of friends and a love for track and field, baseball, basketball, and soccer – all of which he played. Competing with other organ recipients at the 2010 Transplant Games in Wisconsin, he won a gold medal for his discus throws.
After high school, he’d gone off to the University of Colorado at Boulder, where he was studying marketing in the business school and zooming down the slopes on his snow skis.
But there always were limitations, always a regimen: He couldn’t play football, had to drink a lot of water, had to wash his hands a lot. Regular medical tests also were part of his routine, including blood work every six weeks for life and annual biopsies of the heart.
By 2015, he also needed another transplant. Not a new heart. A kidney.
Twenty years of meds designed to keep his body from rejecting his transplanted heart had damaged his kidneys.
Tommy had known for years that this would someday happen. At camps for kids with heart transplants, he’d met others who’d had a subsequent kidney transplant.
By the summer, Tommy’s score on a creatinine blood test, which measures kidney function, was high enough to alarm his nephrologist. The doctor told Tommy he couldn’t return to college in the fall. And that he needed a kidney transplant. Sooner rather than later.
His mother had a different blood type, so she couldn’t donate one of her kidneys. Bird and Tommy were both O-positive, but his father had heart arrhythmia, or irregular heartbeat, and was told he was too old at 52.
Some of Tommy’s former high school friends wanted to donate, but none of them worked out.
Then the family heard from Jane.
‘What’s Tommy’s blood type?’
In August, Bird Anderson ran into Carrington at Christ Episcopal, and told him Tommy needed a kidney transplant.
Within hours, Jane was texting Virginia.
What’s Tommy’s blood type? she asked.
O-positive, Virginia told her.
So is mine, Jane wrote. What do I need to do to find out if I’m a possible donor?
By the next afternoon, Jane had reached all of her doctors and asked them to send in her paperwork.
Virginia was moved to tears. Who does that? she thought.
Tommy was thankful, too. And stunned: It was almost like she hadn’t given it a second thought.
After Jane discovered that she was a match, she and her husband talked about the next step. The risks for her, while real, seemed relatively minor. Still, some of Jane’s family members had hesitations.
Carrington, though, could see how important it was to her. He could see that she felt called.
‘She’s the hero’
Tommy got Jane’s right kidney on Oct. 21. Coincidentally, it also was the fourth anniversary of Henry’s heart transplant.
They texted each other that morning: How u feeling?
At Carolinas Medical Center in Charlotte, all went smoothly for both patients, with separate surgeons in adjacent rooms. Jane’s operation lasted three hours, Tommy’s four.
Post-op, they visited each other’s hospital rooms. They joked about racing down the hall with their IVs-on-wheels.
Just as the gift of a heart had given Henry precious time with his family, Jane felt like her decision to help Tommy would let him move ahead with his life.
In the two months since the kidney transplant, Tommy has been getting his blood checked every week instead of every six weeks. And it has become even more important to stay away from germs. But the 20-year-old already has more energy and everybody, including his grateful parents, tells him how much better and healthier he is looking. His immune system still is building strength, which means a return to college next May is likely.
And Jane, a vegetarian and yoga enthusiast, already is bouncing back, with her creatinine number down to almost where it was before she donated one of her kidneys. Whatever you’re doing, the doctor told her last week, keep doing it.
“I’ll be one of the first to send her a Christmas text,” Tommy said of Jane. “She’s definitely the hero of this story.”
But Jane has another hero candidate: the baby boy she once dressed up as a superhero, proclaiming him “Super Henry.”
Jane and Carrington Coulter aren’t living in the past. They keep busy raising Loulie, now 4, and their other daughter, Martha, 2.
Henry died on a date, Feb. 29, that comes only during leap years. So his parents have been spared some painful anniversaries – a balm Jane calls part of God’s plan.
They miss Henry but still love remembering him. “We talk about him all the time,” Jane said. “He’s around us and with us.”
Their Myers Park home is filled with heart-shaped clothing, food made in the shape of a heart, and framed photographs of a smiling Henry wearing a T-shirt with an “H” inside a heart.
On a recent walk, Jane even spied a heart-shaped leaf, a picture of which she texted to Virginia and to Tommy.
Then there’s the bumper sticker on her car. It reads: “Don’t take your organs to heaven. Heaven knows we need them here.”
This Christmas, Jane is at peace. She finally was able to honor Henry.
“They took my right kidney, and I feel like they cut out that anxiety. It’s gone,” she said. “I needed to do something great for my son.”
Want more information on organ donations?
In North Carolina, speople interested in donating organs can register with the DMV or register online at lifesharecarolinas.org.
In South Carolina, register with the DMV or at www.donatelifesc.org/register.
Those in the Charlotte area who want to be a “living donor” – by donating a kidney, for example – should call the transplant center at Carolinas Medical Center at 704-355-8817.
In the United States, 122,126 people are on the national waiting list for organs (as of Dec. 11.) That includes 3,024 in North Carolina.
Most of the people on the list need a kidney transplant. They total 101,015.