Justin and Tamara Harris prepared themselves to say goodbye to their youngest girl many times.
When they adopted Rynli, now 2 years old, they knew she was born with cardiomyopathy and were told her heart might give out on the 24-hour flight from China to the U.S.
She made it.
Then, last September, when that heart began to weaken, Rynli underwent a risky artificial heart implantation at Children’s Healthcare of Atlanta (CHOA). And when the mechanical heart proved incompatible, doctor’s removed it — an even riskier gamble. They implanted cannulas from two external ventricular pumps, one of them an experimental device being tested at a handful of hospitals.
At each step of the way, Justin and Tamara walked on the edge of a precipice. They were at the extreme vanguard of medical technology, and there were any number of ways for things to go wrong,
Some things did go wrong. Rynli’s pericardial sac was punctured. She suffered a fungal infection, a mini-stroke, bleeding on the brain, sepsis, kidney failure, and then a common cold, which attacked her lungs and forced doctors to put her on a ventilator.
Credit: Harris family
Credit: Harris family
Miraculously, the little fighter came up off the mat swinging. She bounced back. Her kidneys started working again, and she discontinued dialysis. She regained her ability to breathe. They took out the ventilator.
She had been waiting for a donor’s heart since September, and by December, she was almost strong enough to receive one. But donor hearts for toddlers are rare. The Harris family (they have five other children) was told it could be a year before a heart became available.
Around 9 p.m. on March 24, Tamara’s phone rang, but the call went to voicemail before she could fish the phone out of her pocketbook.
“Voicemail said it was the transplant center, and I knew in that moment it was a heart,” she said. “I yelled out to my husband and the kids, oh my gosh it’s the transplant center! They gathered around, we called right back, and we lost it.”
Credit: Steve Schaefer
Credit: Steve Schaefer
A dangerous eight-hour surgery came next. But a new heart, given by an unknown donor, began beating in Rynli’s chest the next afternoon.
Readers of The Atlanta Journal-Constitution met Rynli last Christmas, as her parents and siblings spent the holidays in housing near the hospital provided by the Jeffrey Campbell Evans Foundation, waiting for a heart for their little girl. Their home is in Dahlonega, but the parents had to stay close, and they brought their other children, Daniel, Gavin, Elijah, Emory and Easton, with them.
Today, Rynli is a changed girl. She is plump and pink and a ball of fire.
Her color has changed dramatically, and she has filled out, growing from a skinny 18 pounds to a solid 26.
Disconnected from the machines in the ICU, she visited the library at Egleston in her mother’s arms last week, connected to a rolling oxygen rack by a PICC tube. They looked over a book about kangaroos and listened to Raffi songs on Tamara’s smartphone.
Rynli ”sang” along with “Down by the Bay,” waving her hands and bouncing on Tamara’s knee. They were to be released from the hospital in a few days but would stay close by, as they complete tests and report for checkups.
Dr. Fawwaz Shaw, surgical director of pediatric heart transplants at the health center’s Heart Center said Rynli “progressed nicely after all the early acute events happened, and was in the best possible condition to accept the heart when one became available. Rynli is very feisty.”
It was the 400th pediatric heart transplant at Children’s.
Credit: Harris family
Credit: Harris family
Shaw said Rynli has no discernible cognitive or physical setbacks and should enjoy a normal childhood. Because Rynli was so fragile and susceptible to infection, she had to stay away from her siblings for the past eight months. Easton hoped that his little sister would still recognize him, and Emory was concerned she was missing Rynli’s baby time and wouldn’t be able to carry her around.
“She’s grown up!” Emory cried recently, looking at videos of her little sister. “She’s a toddler, and I’m missing it!”
On May 5, the family was back together. It was Justin and Tamara’s 16th wedding anniversary. Soon all will be back home in Dahlonega.
“To be together as a family in one place is going to be such a celebration,” said Tamara, just before the Wednesday reunion. “I can’t wait for that feeling of being home and back in your bed. I want to sit out on my porch and watch the horses and have a cup of coffee.”
The Harrises have been on an emotional roller coaster and never more so than when they received the news that a heart was available.
“Your emotions are a mess,” said Tamara “because in that moment you have a full understanding of what somebody else is feeling.” Her love goes out to an unknown family, who, during the devastation of losing a child, gave Rynli life.
“All of Rynli’s life,” said Tamara, “there are people who have chosen hope, chosen life; that’s why she’s here. Somebody, again, in the midst of the unbearable, chose life, and that’s why she’s here and has that chance. You really have all the emotions in that moment.”
BECOME AN ORGAN DONOR
There are 107,404 people on the transplant waiting list in this country, according to the U.S. Government Information on Organ Donation and Transplantation; 17 die each day waiting for a transplant. For more information on how to become an organ donor, go to organdonor.gov.
About the Author
