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'Feeling great:' First heart transplant recipient at Dell Children's goes home for Christmas

Nicole Villalpando
Austin American-Statesman
Gerardo Ramirez Jr., 18, is greeted by Austin Fire Department firefighters outside of the front lobby of Dell Children's Medical Center. Gerardo, who goes by Junior, was carried into Dell Children's on Aug. 1 and walked out on his own Wednesday with much celebration as the hospital's first heart transplant recipient.

After 144 days at Dell Children's Medical Center, Junior is home for Christmas. 

Gerardo Ramirez and Myrna Arguello remember carrying their son into Dell Children's on Aug. 1. He kept fainting. 

"We didn't know how bad he was," Arguello says. "He was not telling us." 

His heart was failing.

On a scale in which they measure cardiac illness between 0 to 4, with 4 being the worst, Gerardo Ramirez Jr., who likes to be called Junior, was a 4-plus, says Dr. Charles Fraser Jr., chief of the Texas Center for Pediatric and Congenital Heart Disease at Dell Children’s and UT Health Austin, the clinical practice of Dell Medical School at the University of Texas. "He was really sick. He was right at death's door."

On Wednesday, Junior walked out of Dell Children's to much fanfare, including a car parade and cheers.

The 18-year-old is the first person to receive a heart transplant at the hospital. It's the realization of a program that is more than two years in the making and part of the story of Austin's growth in medical care. 

"I think it's God's miracle," says his father. "He's like nothing happened. He's like a newborn child again." 

The week before, Junior sat on his bed in the rehabilitation wing of Dell Children's and listed all the things he can do. "I can jog. I can run. I can play ... I can do some basketball. I do some yoga." 

"I'm feeling great," he says. 

Gerardo Ramirez Jr. practices throwing a basketball during a therapy appointment at Dell Children's Medical Center. He had a heart transplant on Oct. 3, the first one done at the children's hospital.

More:EXCLUSIVE: First heart transplant at Dell Children’s gives life to new program and a boy

Lidia Melendez hugs her grandson Gerardo Ramirez Jr., 18, outside Dell Children's on Wednesday. His sisters Jasmine Arguello and Lidia Portillo were also there to cheer him on as he left the hospital.

Building a new program

This transplant was not just about one person receiving a heart. It was about a whole new program for Dell Children's, which is evaluating between two and three new patients for heart transplants a month.

Dr. Chesney Castleberry, the medical director of the pediatric heart transplant team, a joint program of Dell Children’s and UT Health Austin, is getting patients referred to her from all over Texas, including San Antonio, Dallas, and smaller towns like Bandera. Sometimes it's not that Austin is the closest place. Sometimes it's about which program the person's insurance will cover. 

"The word is getting out," Castleberry said. 

Currently the hospital has one patient listed for a transplant. Castleberry has many others who will be listed in Austin when it's time for them to get a transplant.

"It really is the last resort," Castleberry said of heart transplant. "We want to be sure. We have to be thoughtful."

A lot goes into being listed, including seeing many specialists and having a support system in place for after the transplant. 

The program is part of an expansion of the entire children's hospital since Dell Children's president Christopher M. Born was hired in 2017 and Fraser arrived in 2018 to lead the new Texas Center for Pediatric and Congenital Heart Disease.

Dell Children's is opening a Specialty Pavilion next to the hospital in April for cardiology, oncology, neurosciences and a new fetal center, which will enable women whose babies need immediate surgeries to deliver babies at Dell Children's. The delivery rooms inside the hospital will be ready by July. 

A second hospital, along with a medical office building, will be built in Northwest Austin at Avery Ranch Boulevard and the 183-A tollway. Dell Children's already has decided to build that hospital four stories high instead of three as previously announced. That will allow it to expand from 36 beds to 72 beds. It's expected to open in November 2022. The medical office space will open in May 2022 and is projected to be full when it opens. 

A fourth tower at the main Dell Children's hospital is expected to open in December 2023. That tower will provide an additional 72 beds for critical care, oncology and acute in-patient services. That tower will allow the cardiac intensive care unit, which opened in 2019 at capacity, to double in size. The neonatal intensive care unit will be able to expand from 24 beds to 56 beds.

In recent years, Dell Children's, working in partnership with Dell Medical School, has hired an additional 100 medical and surgical specialists. 

Reaching the milestone of performing the first heart transplant at Dell Children's is "an indication that Dell Children's wants to serve all the needs of children in the Central region," Born said. "We keep the children of Central Texas here in Central Texas."

The heart transplant program was the first, but more transplant programs are planned. Born estimates that within six to nine months, Dell Children's will be able to perform kidney transplants. 

For Fraser, who did a lot of research in heart and lung transplants, it's a frustration that he can't yet do that here, just like it was a frustration for him that in the first almost two years since he arrived from Texas Children's Hospital in Houston, he couldn't do a heart transplant here.

"That shouldn't be," he says. "The community has to say that's completely unacceptable ... for a child to miss the opportunity for the care they deserve." 

Eighteen-year-old Gerardo Ramirez Jr., who goes by Junior, was carried into Dell Children's Medical Center on Aug. 1, but walked out Wednesday as the hospital's very first heart transplant.

Being the first

Junior knows what it's like to have to try to go elsewhere for care. 

Two years ago, Junior collapsed on a soccer field. That was when doctors discovered he was born with an abnormal heart valve, and he also had a thickening of his heart muscle caused by Danon disease, which was affecting both sides of his heart. Danon's put him at risk for sudden cardiac arrest and required a heart transplant.

"I was surprised," he says. "I didn't want to lose my parents. I know they love me." 

In November 2019, his condition worsened, and he was in heart failure. His family took him to Houston to try to get listed for a heart transplant, but that program wouldn't list him.

Austin's program, though, was getting started. By July 22, it had been approved by the United Network for Organ Sharing to list patients and perform heart transplants.

On Aug. 1, Junior's parents carried him into Dell Children's, where he waited for 63 days for a new heart, the only thing that could help him get better.

At 9:30 p.m. Oct. 2, Castleberry got the call for which everyone had been waiting: A heart had been found for Junior.

Dr. Charles Fraser, right, and Dr. Carlos Mery, left, work on getting Gerardo Ramirez Jr. onto a heart bypass machine so they can remove his heart and put a new one in during Dell Children's first heart transplant on Oct. 3. For two years, Dell Children’s and UT Health Austin have been building a team to start doing heart transplants at the children's hospital.

That set everything in motion for the next day. 

At 2:45 a.m. Oct. 3, a Dell Children's team of two cardiac surgeons and a perfusionist left the hospital by ambulance, headed to the airport, to board a tiny plane headed to where the donor heart was. 

At 8:30 that morning, as Junior said goodbye to his parents, his mom told him, "Everything will be OK." 

Then he was taken into the operating room, which had been outfitted especially for the cardiac program in anticipation of being able to do heart transplants. 

There, a team led by Fraser began working against the clock to get him onto bypass before the heart arrived in the operating room at 12:30 p.m.

Junior had been so sick that his heart stopped as they were preparing him to go onto bypass for the transplant, but after a few seconds of CPR, they restored his heartbeat and were able to get him onto bypass and transplant his heart.

He returned to the cardiac care intensive care unit by 6 p.m., and then the real challenge began. 

The team wheels Gerardo Ramirez Jr. into the operating room where they will transfer him onto an operating table. They talk to him the whole time to try to keep him calm.

The idea was to get him up and out of bed as soon as possible and into the rehab unit. 

"Nothing happens until a patient can get out of bed," Castleberry said. But for Junior, that wasn't going to happen right away. 

His new heart was strong, but, says Castleberry, "he needed intense support."

Because he was so sick before the transplant, his recovery was difficult. About a week in, they thought Junior would be able to breathe without support, but it was too difficult on his body and he went back on a breathing tube. That gave his lungs a break and saved his new heart from having to work so hard.

"Everything was shutting down," Fraser said, including Junior's kidneys and liver. "For a while, the only two good organs he had was his heart and his brain." 

They had to put him on dialysis for his kidneys. The day his mom says "he went the other way," was when she was most worried — not about his heart, because it was strong, but about the rest of his body.

When Gerardo Ramirez Jr. started to improve, he could be taken off the breathing tube. He is grateful for the nursing staff in the cardiac intensive care unit and said he missed them when he moved to the rehabilitation unit.

Dell Children's and all the materials his parents were given before the transplant and after gave them a realistic picture of what the recovery would be like. 

"It was expected, but it was still scary," Arguello says. "We knew the organs would need to adjust ... but it was still scary. He was feeling like he couldn't breathe."

Kids who are so ill that they have to be in the hospital before a transplant typically spend about 12 weeks recovering from the surgery, compared with a few weeks when they are at home before surgery, Castleberry says. Junior is almost at the 12-week mark.

The team — everyone from the intensive care nursing staff, to the pharmacy, to the nephrologists to the pulmonologist — did not give up. "Everybody did what they needed to do to get him through this," Fraser says. "It was extremely gratifying. We can take on a magnitude of problems and have a good outcome."

Castleberry enrolled Junior in a clinical trial of a new set of medications for younger transplant patients. The current approved regimen was designed for older patients. Surviving with the same heart for 15 years after a transplant is different in a person that was 60 when it was put in versus someone who was 15, she said. She wants kids who have transplants to be able to have the same heart 20 to 30 years down the road. 

Gerardo Ramirez Jr. writes a message on the mirror in the physical therapy room. He's returned to doing schoolwork after Thanksgiving after having a heart transplant on Oct. 3.

Back to being Junior

Junior doesn't really remember October. 

Fraser knew Junior was starting to improve when his gastrointestinal tract started to recover, he says. The kidneys and liver returned to close to normal. 

For Junior's parents, they knew he was going to be OK the first week of November when he was trying to get out of bed and started asking for Pluckers. Pluckers was closed, so he asked for some chicken nuggets. "Like four or six?" his dad remembers asking. "No bring me 20," Junior answered. 

Right after Thanksgiving, Junior started attending his school classes virtually again. His parents didn't even know he had started school until a social worker called his father and told him that Junior had gotten on the iPad and talked to his teacher. 

"I was surprised he did it on his own," Gerardo Ramirez says. "He loves school."

Junior is down to four medications, which he'll take for the rest of his life, after having been on between 15 and 20, Castleberry says. 

"It's fine-tuning now," Fraser says. "So far, he hasn't had any rejection. The heart function has been excellent. We're proud to get him out of here." 

Junior still has a tracheotomy. They'll keep it in during the heavy virus months of winter in case he gets sick so they can quickly support his breathing, but he doesn't really need it. 

Gerardo Ramirez Jr., who goes by Junior, poses with University of Texas hat as he leaves Dell Children's Medical Center on Wednesday.

Junior has been caught running up and down the hall and has been practicing walking up and down the stairs. 

"He looks 10 times better, better than I thought he would look," Castleberry says. 

He's even putting on weight again. 

Junior has big plans for when he goes home. He wants to go to Pluckers. He wants to watch Christmas movies with his family. 

"I can do a lot of things," he says. "I can throw out the trash. I can clean the dishes. I can do my own laundry. I can take a shower by myself. I can put on my own clothes. I can go out with my parents and eat Pluckers." 

Junior and his parents will have a dedicated phone number to call if he has a fever or cough or abdominal pain, which is an indicator of heart disease, and one of the previous symptoms Junior had.

Gerardo Ramirez Jr.,18, answer questions from the local news media with his parents, Gerado Ramirez and Myrna Arguello. "We didn't know how bad he was," Arguello says about Junior's condition before he came to the hospital.

Into the future

Fraser likens a heart transplant to shooting a rocket to the moon. "We get numb to heart transplant, but it's still a really big deal for the first time or the thousandth time." 

The program was designed to not just be about building a transplant program, but about building a full cardiac care program from structural repairs to assist devices to transplant. 

It's grown much faster than Castleberry anticipated. For example, they put in a ventricular assist device before they thought they would because a patient needed it and they had the surgeons who had the experience to do it. 

When it comes to cardiac care, Fraser says, "We can pretty much take care of almost anything now." 

It's about making it even better, he says. "Let's make this state of the art and improve it," he says. "Why shouldn't Austin, UT, Ascension be the thought-leaders in transplant?" 

While everyone is feeling good about where the transplant program is, Castleberry says, there are things they have learned from Junior's transplant. 

Castleberry has realized that it will be different in Austin compared with where she was in St. Louis because of geography. St. Louis was close to many major cities and even got organs from hospitals in the same city.

Where Dell Children's can find a heart might mean looking farther away, which means the heart will be out of a body longer; in Junior's case, that was five hours and four minutes. Less than six hours will be ideal here, compared with in St. Louis, where often it was within two or three hours. "That's going to be a reality for us," Castleberry says. 

The next year of Junior's life is important, too. A hospital becomes a Center of Excellence once it has had one transplant patient make it through the first year. That matters, especially to insurance companies. 

Junior's family is focused on him healing at home. They also have another son, who is older, who has been in the hospital this fall with a brain infection. They hope to have him home soon, too. 

Grandmother Lidia Melendez and sisters Lidia Portillo and Jasmine Arguello look on as Junior answers questions from the local news media as he gets ready to leave the hospital on Wednesday.

Gerardo Ramirez's biggest hope for his family is "just to be a family again" under one roof. 

They often think of the donor's family, especially when they see Junior being energetic and moving around. The hope to meet the family one day. 

"I'm sorry for the loss, but also to thank them because he's here with me," Gerardo Ramirez says.

"We're so grateful and thankful everything came out," Arguello says. "It was the right time, the right moment."

Junior says his new heart feels better. "I don't even get tired a lot," he says. "Every time I do something, I'm proud of myself."

Gerardo Ramirez Jr.,18, along with his mother and father, Myrna Arguello and Gerardo Ramirez, wave at the car parade for him as he gets ready to leave Dell Children's on Wednesday.

Expert reporting

Statesman reporter Nicole Villalpando has been following the start of the transplant program and the expansion at Dell Children’s Medical Center of Central Texas. She was allowed into the operating room when the new team performed the hospital’s first heart transplant.

Gerardo Ramirez Jr.,18, along with his mother and father Myrna Arguello and Gerardo Ramirez wait for a car parade for him. They are looking forward to spending Christmas as a family, including watching Christmas movies together.