On Monday, 13-year-old Rome Henderson walked into her middle school for the first time since December. It was a milestone that seemed impossible at the end of 2016.
Rome was admitted into Dell Children’s Medical Center of Central Texas on Dec. 11. She was having chest pains and difficulty breathing. She was nauseated and didn’t want to eat.
“I had never had anything like this before,” she says.
Doctors realized that the left ventricle of her heart was giving out. Fluid was now in her lungs. She would need a heart transplant, something her parents had known was a possibility her whole life.
By Christmas Eve, Rome was transported to Children’s Medical Center of Dallas, one of only two hospitals in Texas that do pediatric heart transplants.
She was put on a Impella left ventricular assist device that did the work her heart could no longer do. The device is FDA approved in adults for use for three days or less, not for children, but Dr. David Sutcliffe, Rome’s post-transplant cardiologist, says all the machines they use in pediatrics are used as exceptions to the FDA approval.
By Dec. 26, Rome was on the heart transplant list. “We needed a miracle,” mother Robyn Henderson says. “They needed a heart. They would do everything they could do to prolong her life, to keep her going.”
They needed Rome to be saved for the second time by an organ donor. April is National Donate Life Month. Donate Life America estimates that 118,000 people are waiting for an organ donation. Another person is added to that list every 10 minutes and 22 people a day die waiting for a donation. A person who agrees to donate organs, eyes and tissues can save up to 75 lives. One of them could be a girl like Rome.
Another chance at life
Robyn Henderson knew at her daughter’s first ultrasound that something was wrong with Rome’s heart. There was a hole in it and a narrowing. Rome would need heart surgery as soon as she was born.
Rome’s first surgery was when she was a day old. Her next surgery was when she was 6 months old, when a donor valve from the tissue bank was inserted and her heart was reconstructed.
Robyn Henderson says she always knew that that wouldn’t be a forever fix, that eventually Rome would need a heart transplant.
For more than a decade, Rome’s heart worked, and by taking medicine, she was able to do everything other kids do. Doctors had told Robyn Henderson to make sure that Rome drank a lot of water and sat down if she got tired, but that was all the instructions.
In December things changed, and they were headed Dallas.
“I was scared,” Rome says. Heart failure was something she had always been told might happen and now it was happening. Once she was on the Impella, Rome was kept unconscious.
As Rome’s heart was being kept alive, her parents were being updated with her progress. By Dec. 31, they were told that her right ventricle, the one that had been healthy, was now giving out because the Impella was now doing the work of the heart instead of the heart doing its own work. Rome was running out of time.
On New Year’s Day, the hospital called her parents to come in for a meeting. When they were walking toward the meeting, Robyn Henderson remembers her husband, Devon, saying, “I don’t know if I can take much more.” She told him to stay positive. What if they were calling to say they had a heart? “What if it’s not like the movies and it’s not very dramatic?” she remembers telling him.
She was right. They were told they had a heart, “We were just amazed,” she says. “It couldn’t have come at a better time. We were smiling. We were jumping around. It was crazy.”
“It was the perfect heart for her,” Sutcliffe says.
The United Network for Organ Sharing manages the national organ transplant list for the federal government and sets the priority. Patients who are at the highest risk for death move higher on the list and receive priority when an organ becomes available that is a good match for them.
Patients Rome’s age and size typically spend three months waiting for a heart transplant, Sutcliffe says. Waiting only a week was another miracle.
Rome really doesn’t remember much about the days after her transplant. She says it took her about two months to fully understand that she had had a heart transplant. “I was confused as to what happened,” she says. “I was trying to get everything together in my head.”
It didn’t really hurt, though, she says. She did have trouble accepting it and didn’t want to look at the scars, both the new ones left by where the chest tubes were in and the ones from the actual transplant, and the one that still remain from when she was a baby.
Robyn Henderson says she noticed the difference in her daughter immediately after the surgery. Her coloring was different. The purple tint that had been on her limps and the dark coloring under her eyes were gone. Rome’s new heart was giving the blood better circulation.
Every day, doctors and nurses pushed Rome to do more and more. “As a mother, I want to keep her in a bubble, but they pushed her every day and she got stronger,” Robyn says.
The three months in the hospital went by quickly.
“It blows me away,” Robyn Henderson says. “I felt like every day was an improvement than the day before.”
They came home to Austin April 2.
Now, Rome is able to do everything she was able to do before, just with anti-rejection medicine keeping her and her new heart getting along.
Not a permanent fix
Sutcliffe says he tells his patients a heart transplant will last 10 years. Sometimes, though, patients will get to 20 or 30 years, he says.
Some people experience acute rejection, which means their body has an incident of shutting down as it tries to get rid of the new organ. Even if they don’t experience that, they do experience chronic rejection, which doctors are trying to constantly prevent.
Sutcliffe says in Dallas, they’ve had patients who have had two, three and four transplants.
“We try not to think about things like that,” Robyn Henderson says, but if rejection were to happen, there is some comfort in knowing it’s possible to get another transplant.
Henderson says many people in her family are now organ donors. She’s been one since Rome was a baby, the first time they needed a donor.
They know nothing about the person who gave Rome her heart. In a year, Rome and her family can write a letter to that family and seek information. “We want to show our appreciation and really thank them,” Robyn Henderson says. Even Rome wonders about that person. Was it a man or a woman? How old were they? How did they die?
“You have a part of someone that’s a part of you now,” Robyn Henderson says. “You want to tell them thank you.”
Rome doesn’t dwell on this transplant or talk about needing another transplant. She talks about wanting to be president when she grows up. She’s good at reading and writing. She’s started looking at which colleges are good, she says, but has not settled on a major. She has time. Thanks to her new heart.
How to be an organ donor
You can sign up online at donatelifetexas.org/register. Make sure you notify your family members, especially those who would be making medical decisions for you if you were incapacitated.