Meet Sydney: A novel double organ transplant offered her a pathway to achieve her dreams

Last year, Sydney became too sick to stay at school. Now she’s back with the same bright smile and pride for her university. The only thing different about Sydney is her heart – and her liver.

"I've known for my entire life that eventually I might need a heart transplant and maybe a liver transplant. I was ready," Sydney said.

Her team of doctors was ready, too. Leading her care team was Ryan Butts, M.D., Medical Director of the Pediatric Advanced Cardiac Care Program at Children's Health and Associate Professor at UT Southwestern.

"As sick as Sydney was when I met her, she had a cheerfulness that couldn't be clouded," Dr. Butts said. "But seeing her enrolled back in college just a few months after surgery is amazing. Now I truly understand what a gifted and talented person she is, and that's the whole reason we do our jobs – to see our patients thrive outside of the hospital."

Sydney was one of the first pediatric patients in the country to receive a heart and liver transplant with the help of an innovative technology called normothermic machine perfusion (NMP). NMP helps keep donated organs as healthy as possible before and during transplant, leading to more effective procedures and better outcomes for patients like Sydney.

"This technology does a lot of important things for us in the operating room. But it also means patients often spend less time in the hospital and rehab will move more quickly," said Christine Hwang, M.D., Pediatric Transplant Surgeon at Children's Health and Associate Professor at UT Southwestern.

With the recent opening of the new tower at Children’s Medical Center Plano and the groundbreaking of the new Dallas pediatric campus, Sydney is inspired by how many more kids and young adults like her will receive lifesaving care.

“I think our community needs resources like Children's Health because there are a lot of kids that are sick and don't have the money to get the resources and help that they need,” Sydney said. “Children’s Health does a great job at catering to kids who need help – they did everything to put my health first.”

Sydney's cardiac care began with a sonogram

When Sydney's mom Chelle was pregnant, she got some special treatment from her OB/GYN. That's because the clinic she went to was also where Sydney's dad, Marc, practiced. One day the sonogram nurse noticed an abnormality with baby Sydney’s heart. Soon, Chelle and Marc learned their baby had hypoplastic left heart syndrome (HLHS), which happens when the left side of the heart doesn't fully develop.

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She had her first surgery at a few days old, and they had to leave her chest open. I could actually see her heart pumping. The first time I held her was intimidating. There were so many tubes and machines connected to her little body. But something about this baby was so peaceful. I knew she was going to make it.

— Chelle

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Sydney had two more open heart surgeries before her fourth birthday. Because of her condition, she couldn’t do sports, so she danced. After graduating with the class of 2022, Sydney was off to Southern University. College was everything she hoped for. But during her second semester, she realized that even a walk between classes left her feeling exhausted. Then, she started feeling severe pain in her stomach.

"One day, Sydney called and said, ‘Mom, I need to come home.' This was a girl who would push through anything, and the worst thing she could imagine was leaving school," Chelle said. "When I went to get her from the airport, she collapsed in my arms crying. I knew her next heart journey was beginning."

Planning and preparing for a complex procedure

Sydney and her parents met with a team of The Heart Center and Pediatric Liver Transplant Program doctors who began to unpack everything about Sydney's health and make a plan to restore it. This meant Sydney would need an expert care team who could carry out not one but two transplants.

At the ready were Dr. Hwang and Ryan Davies, M.D., Pediatric Cardiothoracic Surgeon at Children's Health and Professor at UT Southwestern.

"People born with HLHS often eventually need a heart transplant, and some need a new liver. That's because, even after the surgeries she had when she was little, Sydney's heart wasn't able to bring blood from the liver to the heart as efficiently as it's supposed to," Dr. Hwang said.

Together, the family and providers decided that Sydney would move forward with the transplant process, and Dr. Butts began walking them through every aspect of the plan, including the challenges of finding a match.

"Dr. Butts reminds me a lot of my dad," Sydney said. "He broke down the medical information so I could understand what was happening. He was the person I could go to for anything."

Dr. Butts was especially impressed with Sydney's commitment to her physical health. He explains that while he was looking at her labs and making adjustments to her medications, Sydney had to work, too.

"This surgery takes a huge toll on your body, and the more nutritional reserves a patient has, the better they'll heal. Our patients work closely with a dietitian, and they need to stay moving. Sydney did a great job as my partner in maintaining her health," Dr. Butts said.

For Sydney's family, her transplant marked what they hope will be the end of a lifetime of uncertainty fought off by their deep faith and confidence in her care team.

"As a mom, every part of this process is daunting. There were times where I was completely overwhelmed by the hope of the best-case scenario and the realities of the worst," Chelle said. "But I've been watching this girl endure the health challenges that she's been dealt since before she was born."

Moving into Children's Health – Sydney's wait begins

On July 5, 2023, Sydney officially moved into Children's Health to be ready for donor organs as soon as they were available.

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Children’s Health is hyper-focused on making innovations that minimize the time a patient waits for an organ and optimize the health of the organ they receive. One of the tools that can help us succeed is NMP. Sydney is helping us show the rest of the pediatric transplant community what is possible.

— Dr. Davies

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To pass the time, Sydney worked her way through a stack of books. When she needed a boost of faith, she leaned on her Bible. Her friends from home and her new network from college were also a huge support.

Finally, at the end of July, the day had come – two organs were available, and they were for her.

"My whole family was with me before my surgery. We prayed together, we took pictures and then a few hours later I woke up, and I knew it didn't happen," Sydney said.

A couple of hours into the surgery, while Dr. Davies was preparing to take Sydney's heart out, the donor heart stopped working.

The family was disappointed but not discouraged. Sydney was determined. She had made it through three major heart surgeries before preschool. She would not give up now.

Almost a month later, another set of organs was ready for Sydney.

"Our original liver transplant surgeon was out of the country, so we met Dr. Hwang that day, which was overwhelming because parts of the plan changed and we had been planning every moment of this procedure for months," Chelle remembers. "Even with the changes, we felt the team's confidence. They wanted this for Sydney as much as we did."

NMP offers a win-win for patients and providers – less waiting and healthier organs

Dr. Davies would perform the heart transplant, and then Dr. Hwang would step in for the liver.

With the second set of donor organs, Sydney's doctors had the opportunity to utilize the NMP system. They wanted to keep the donated organs as healthy as possible before and during the surgery, ensuring the most effective procedure and the best outcome for Sydney.

"Every minute an organ spends not working in a body, its cells start to break down. An organ sitting on ice is only viable after about 4 to 6 hours," Dr. Davies said. "NMP keeps warm oxygen-rich blood pumping through it, mimicking the body's natural conditions."

The machine minimizes the shock an organ experiences being moved from one body to another and can double or triple the duration of the organ's viability. This was especially important for her new liver, in case there were any challenges with the heart transplant.

Once again, Sydney's family embraced her with love and prayers.

"It was a long day and night and her surgery went well into the next morning. We were grateful for every milestone she made it through," Chelle said.

In the operating room, Dr. Davies was glad to see Sydney's new heart was doing well with the support of NMP.

"NMP provided a lot more information about the heart's health as I was operating. It also meant that I had a better understanding of how the heart was going to do when I passed her to the liver team," Dr. Davies said.

During the heart transplant, Dr. Hwang optimized the health of Sydney's new liver as it received blood and oxygen from the NMP machine.

"We all saw that the heart was doing great and that set us up for a smooth liver transplant," Dr. Hwang said.

After 88 days in the hospital and surgery that started on a Sunday and ended on Monday, Sydney finally had a healthy heart and liver. "It was probably a week before she was awake enough to realize it happened, so I sat with her and held her hand and waited for her to squeeze my hand," Chelle said.

For Sydney, the most difficult part of the experience was the recovery. She spent the first couple of weeks with bandages wrapped around her body, making it difficult for her to move. Her throat burned for days after the ventilator was removed. Sometimes, the nerve pain felt unbearable. When she was finally able to stand, walking became another hurdle she wasn't expecting.

"My rehab team and the nurses kept telling me I had to give myself grace. At first, it was hard to celebrate my progress, because walking should be easy," Sydney said.

A new chapter for Sydney and the Children's Health transplant teams

A full year after her transplants, Sydney has noticed a huge difference in how she feels and how much energy she has. This summer, she plans to get an internship.

Drs. Davies and Hwang are looking forward to continuously improving pediatric transplant medicine. One of their biggest priorities is reducing the time that patients wait for organs. They plan to study every aspect of Sydney’s, including her long-term health and publish their findings for other hospital teams to learn from.

Philanthropic donations play a key role in pioneering research and breakthroughs in pediatric cancer, heart and liver disease for patients like Sydney.

"Everyone at Children's Health wants to take on the greatest challenges in transplant medicine. Sydney’s success will be studied by physicians around the world. With NMP, we have the opportunity to qualify more organs and take on more complex cases. That means a lot as a physician, but it means even more to the families whose kids are very sick," Dr. Davies said.

Equally important is their partnership with families like Sydney's.

"Since the moment she was born, Sydney has faced challenges most people will never understand and somehow she did it with positivity. She is the inspiration that pushes our team to keep making life better for children." Dr. Davies said.

Sydney is more than ready for her next chapter to begin.

"This surgery offered me a path to actually begin my story and to pursue everything I want to in life," Sydney said. "I'm very grateful to my doctors, my family, my friends and the donor's family for giving me the gift of a brighter future."

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