Tamara and Justin Harris weren’t planning to adopt another child.
However, after the most hectic year of the Dahlonega family’s lives, the two can’t imagine life without their ‘miracle baby.’
“Rynli is a gift, she is pure joy all the time,” Tamara said. “To think back at the thought that we could've missed this if we said no to adoption, honestly would be heartbreaking. I can't imagine Rynli not being in our lives.”
Rynli’s journey started in China, where at two-months old, her biological parents made the gut-wrenching decision to do the only thing that would allow her a chance at life.
“In China they don't have health insurance, so for any medical need, you have a medical account and you place funds into that account and based on what you've placed into the account they tell you what they can offer you,” Harris said. “But if you cannot pay ahead of time then you're not treated. So because of that, many babies in China that are in orphanages, it's due to a special need of sort.”
This was the case for Rynli, who was born with congenital cardiomyopathy, “which is a form of heart failure that some children are born with,” explained Dr. Fawwaz Shaw, Surgical Director of the Pediatric Heart Transplant Program at Children’s Healthcare of Atlanta. “From birth, her adopted parents knew of her clinical condition and knew of the need for her to have potentially a heart transplant in the future.”
The Harris family was ready to help.
“Rynli's parents loved her dearly and made the ultimate sacrifice,” Tamara said. “They had left her right outside of the children's hospital at two months old with a note that had all of her medical information that said exactly what was going on and just that they had depleted their funds and asking would somebody please help their baby. So Rynli is here today because honestly, everyone in her life chose hope, and it started with her parents.”
Although, this was only the first step in giving Rynli hope. Once in the orphanage, hope almost ran out once again, as it was considered a longshot for Rynli to be adopted.
“Adoption files are very expensive to make so they didn't think that they would be able to find a family that would commit to that and so they weren't going to make a file for her,” Tamara said. “But there happened to be a missionary from the States that volunteers in the orphanage there and she was there on the day that they brought her in.”
That missionary then posted in an advocacy group, which is where the Harris family comes in.
“We did not plan to adopt,” Tamara said. “We just planned to advocate for Rynli, but we'd adopted previously and Rynli needed somebody that could move pretty quickly.”
From there, Tamara and Justin felt God was leading them to Rynli.
“The more we learned about her, the more information we had, the more we fell in love and really felt like she was ours,” she said. “And the more we heard that it's high risk and she may not make it, the more we felt the need to move faster. Rather than be scared off we were like 'come with us.'”
The family began the adoption process in July of 2019 and were on their way to China to bring Rynli home on Oct. 31.
Once back home with their new, 10-month-old daughter, the family was given hope that perhaps Rynli would be a rare case that would not need a heart transplant after all.
CONVENIENT QUARANTINE
Soon after Tamara and Justin returned with their new addition, the pandemic began, forcing families to stay at home for much of 2020. While the quarantine was an inconvenience to many, Tamara said the time gave her family of now eight an opportunity to bond.
“The timing worked out perfect for us,” she said. “It really enabled us to grow close as a family and have that extra time. Not knowing that after that 10 months that we would have to endure this trial, but we really spent an incredible amount of time together...It was such a blessing, we had so much fun and it really enabled us to form that bond before being admitted.”
However the Harris quarantine took a drastic turn in September, when Rynli began getting sick. At first they thought it was stomach bug until Tamara took note of her abnormal breathing.
She first called the cardiologist before heading directly to the pediatrician. The news of heart failure fell hard on the family.
“I had my other children with me and I was just trying to hold it together in that moment and be strong for them and know what we were about to face was a thing so incredibly hard to know that we could lose her so quickly,” Tamara said. “Even though you think you could be prepared for something, you're not. You cannot be prepared for that.”
HOLDING OUT HOPE
The family went straight to Children’s Hospital of Atlanta, where they received even more bad news.
“They told us she was not just in mild heart failure, it was severe and that her heart was barely quivering and we weren't sure if she'd even make it through that night,” Tamara said. “Honestly, we didn't sleep that night. We just stayed and waited to hear what the plan was and just prayed that God would just hold her. Early that next morning they placed her on ECMO, which is life support.”
This is where the parents met Dr. Shaw and the rest of the transplant team, who Tamara said gave the family hope.
“They were honest with us about what we were facing, which we appreciated, but there was hope,” she said. “Any tiny piece of hope, we held to.”
While Rynli had already overcome a lot just to make it to this point, her tough journey was only beginning.
“From there, we seemed to hit every complication we could hit,” said Tamara. “She had several procedures.”
One such procedure faced complications that led to her first open-heart surgery. Dr. Shaw later told the family that Rynli was the first child he’d had survive the emergency open-heart.
Met with more operations, Shaw and his team gave Rynli only a 10 percent chance of surviving their next procedure, which would put two ventricular devices in to power her tiny body instead of her heart. If she survived the procedure, this would potentially give her a short-term solution until a heart became available for transplant.
“They let us know that Rynli was very, very sick and that she'd been through so much already and they weren't sure if she would come through,” Tamara said. “They gave her a 10 percent chance, but she came through that.”
Even after defying the odds again, the problems kept compounding.
“After that she had a stroke, a brain bleed, two G.I. bleeds,” Tamara said. “As she was finally beginning to heal and get better, she got a Rhinovirus, which is just the common cold, but because she'd been so sick it sent her into septic shock. They did not think she would pull out of that and on the week of Thanksgiving, they prepared us that she may not come out of that, but she did.”
Once Rynli simply survived all of her major issues, her body was still recovering from all it had been through, making it to where she couldn’t have received a heart at that point if one were made available. After apparently recovering in February of this year, she got pneumonia, which forced her back on a ventilator. Her sickness then compounded into osteopenia, meaning that her bones had become very brittle.
“Truly the amount of suffering that she has been through and continually watching her have to endure and fight through, it's been a rollercoaster of emotions,” said Tamara.
Despite the dark circumstances, the family continued to cling to their faith as Rynli beat one challenge after another.
Finally in March, Dr. Shaw felt the time was right to go ahead with the transplant and Rynli received a donor after just four months on the list.
While she knew her daughter desperately needed a new heart, Tamara, knowing the only result that could lead to a heart being available, felt that it was a heavy thing to hope for.
“The thought of someone else having to lose the life of their child would mean life for our child, that's a very heavy gift and we'll forever be grateful to our donor, our hero heart, to think that somebody in the very midst of the most unbearable pain would again choose life for someone else is incredible and it's a lot to take in,” she said. “It's very emotional and very hard to think about.”
Once the heart was made available, Shaw and his team prepared to do the transplant the next morning. On March 25, 2021, Rynli underwent the 400th Heart Transplant in the history of Children’s Healthcare of Atlanta. And Shaw said it was not an easy one, even relative to the difficulty of heart transplants where there are no simple procedures.
“Transplants are always challenging operations. I think they are made more challenging in patients like Rynli, who had multiple heart operations with ventricular devices placed before,” Shaw said. “These are operations that typically last between eight to 12 hours. An incredible amount of resources in terms of teamwork and just time is spent coordinating a transplant. At any one point in time we have eight to 10 team members assisting with the heart transplant.”
CLINICAL CONNECTION
Having treated Rynli for those four months leading up to the transplant, Shaw grew very close to Rynli, saying she made him a better doctor.
“As a surgeon and as a physician in general, I think you come across patients from time to time that are more than just patients,” he said. “They push you to do better and do more and really, they push you to evolve your thinking...Over the course of her eight months here at Children's, I've had the opportunity to spend a significant amount of time with her and watching her and waiting for the perfect opportunities to do the things that she needed and I think those things remain with you for a really long time. … We’re just incredibly honored and humbled to be able to provide her with all of the things that she's had in the time that she's been here, culminating in the heart transplant.”
Tamara said the staff, particularly the transplant team, had gone the extra mile for Rynli and their family.
“The team here really have become family,” she said. “They cried with us, they prayed with us, they have gone above and beyond in every aspect. I can't imagine after living what we've lived this past year. I have seen these nurses work themselves to exhaustion and it never diminished their level of care. And too, Dr. Shaw who was constantly at her bedside, and the transplant team always looking at the next step, always three steps ahead for what they would need to do. … They really fought for her as if it were their child.”
And despite all of the challenges along the way, Rynli was finally able to ring the bell, signaling her discharge after 288 days in the hospital.
Tamara said her family couldn’t have survived the mental rollercoaster of those 288 days without their faith.
“When we started the adoption, we knew that there was a possibility we could lose her,” she said. “But we said that from the beginning that we really felt like God had led us to this moment and that this is what He was asking of us and that when we're in His will, that's really the safest place to be, so the safest decision would always be to follow God and follow what He asked us to do. In this case it was the biggest blessing of our lives. … We said from the beginning that we would be risking the breaking of our own hearts for a chance that hers could be healed and now we will get to enjoy life with her. Now she has a chance at life and we get to be her Mommy and Daddy, which is amazing.”
Last week, exactly one year after entering the hospital for the first time with a failing heart, Rynli found herself in much different surroundings. Vacationing with her family, far away from the beeping monitors and dripping IVs, at the beach. It’s her favorite place, said Tamara.
“She is almost exactly six months out from transplant and is doing beautifully,” she said. “She is weaning off her feeding tube, eating full meals and is close to walking again. Most importantly, our joy-filled little girl is here and happy.”