Milestone procedure saves preemie with complex heart disease

Baby Hope looked into her mother’s eyes and gurgled.

Four days short of turning 9 months old, wearing a white onesie with the words “Best Gift Ever” on the front, she made more baby talk.

“You’re always a big chatterbox – what are you saying?” her mother, Elizabeth “Becca” Wyneken, said as she smiled and stared into Hope’s blue eyes.

Becca and Hope endured a lot to get to where they are now— a happy and very grateful mom and a relatively healthy 9-month-old baby girl whose light-brown hair is just starting to fill in.

The odds were stacked against Hope when she was born prematurely at 31 weeks and five days, weighing just 2 pounds, 3 ounces. Today, Hope is alive thanks to a team of doctors, nurses and others who cared for her throughout a four month stay on CHOC’s neonatal intensive care unit (NICU) and cardiovascular intensive care unit (CVICU).

Hope was born with a complex heart disease, as well as only one kidney and defects on her right leg and foot. Her cardiac neonatologist, Dr. Amir Ashrafi, pegged her chances of survival at between 20 and 30%.

“Don’t worry, Mom,” Dr. Ashrafi told Becca. “I think we can help her.”

Dr. Ashrafi and Hope
Dr. Ashrafi with Hope, during her stay in CHOC’s NICU

It would take an extensive collaboration between highly regarded cardiovascular interventionalists, some of whom were consulted at hospitals as far away as London, to do so.

And it would involve a high-risk procedure never performed on a baby so small at CHOC.

Grim news at 20-week scan

At 18 weeks pregnant, Becca, a teacher’s aide, went in for a checkup. Blood tests showed her baby had a high risk for Down syndrome and spina bifida.

Two weeks later, a scan of her baby’s anatomy revealed other potential problems.

Becca was told her baby had no kidneys, appeared to have no bladder, no right leg, no lungs, issues with her bowels, and a heart defect.

“I don’t think I stopped crying for the rest of the day,” Becca recalls. “It was horrible.”

Becca couldn’t drive home from the clinic; a friend had to pick her up. That night, Becca had dinner with her mother and aunt. Later, lying beside her mother, Becca cried.

“I can’t believe this is happening,” she said.

She felt a poke in her belly.

“Over and over again, when I got upset, she would poke me,” Becca said.

At that moment, she decided on a name for her baby.

“Hope,” Becca told her mother.

Second opinion reveals true complications

Becca got a second opinion about her unborn baby’s condition.

Her baby was missing a kidney and had a leg defect, she was told. Most seriously, Becca was told, the baby had a defect on her right ventricle, the chamber within the heart responsible for pumping oxygen-depleted blood to the lungs.

Hope’s aorta and pulmonary artery, which carry blood away from the heart, hadn’t developed properly. She had a hole in her heart as well as one in her left superior vena cava, a vein that helps circulate deoxygenated blood back to the heart. These defects caused blood to drain incorrectly; Hope would need a team of doctors to correct the blood flow.

“Being very small with complex heart disease, your options are very limited with what you can do and the timing of any procedures,” said Dr. Ahmad Ellini, Hope’s primary pediatric cardiologist.

There were lots of sleepless nights as Hope’s team of doctors and nurses monitored her closely. Becca was beside her nearly every night.

Dr. Ashrafi and Dr. Ellini consulted with two outside experts, San Francisco-based Dr. Mohan Reddy, who specializes in complex heart disease in small newborns, as well as thoracic and cardiac surgeon Dr. Glen Van Arsdell of Ronald Reagan UCLA Medical Center on the best course of action.

The team of physicians determined that a stent needed to be inserted under a pulmonary artery that was becoming too narrow making it hard for blood to flow through it. Such a procedure is risky, especially on a baby so small.

“In Hope’s case, the idea was if we could open up the area below the valve while not injuring the valve, that would be a home run,” said Dr. Sanjay Sinha, a CHOC pediatric cardiologist who put the stent in Hope’s heart. “Two things made this difficult: she was very small, and we had no stents this size.”

A vendor was able to secure the small stent needed a day before Hope’s surgery.

newborn baby in CHOC’s NICU
Hope as a newborn in CHOC’s NICU

Assisting Dr. Sinha during the procedure was Dr. Michael Recto, medical director of CHOC’s Cardiac Catheterization Lab.

Observing the recently developed procedure, known as valve-sparing RVOT — or right ventricular outflow tract — stent placement, were several cardiologists from CHOC and other pediatric hospitals.

“In some patients, there is very little room for a stent. Hope had just enough room for the stent to be placed,” Dr. Sinha explained. “We knew we had the technical skills and ability to do this, but this had never been done before at CHOC on a baby this size.”

A very scary moment

After the surgery, Hope got seriously ill with a viral infection. At one point, Dr. Ashrafi said, her heart stopped but the team was able to revive her.

In cases like Hope’s, where a newborn’s state of health is fragile, members of her clinical team often must pivot in an instant, making their work schedules long and unpredictable.

Hope was at CHOC for four months before she was able to go home. After that, physicians at another hospital removed the stent, closed the hole in her heart, and corrected her left superior vena cava.

Dr. Ellini, who continues to see Hope at check-ups, is very pleased with her progress.

“She basically has a normal circulation,” Dr. Ellini says. “She needed a pacemaker. Overall, she’s doing great. She’s only on one medication and is gaining weight.”

In fact, she’s up to 13 pounds.

Dr. Ellini says he’s proud of the extensive collaboration that was involved in Hope’s care at CHOC.

“We try to really foster a collaborative team approach in our interventional lab, and this is a great example of that,” Dr. Ellini says. “Having a dedicated neonatal cardiac intensive team of physicians and nurses who are really experts in what they do really was paramount in making sure Hope did well.”

Becca can’t praise Hope’s team at CHOC enough.

“They’re totally lifesavers,” she says. “It was a roller coaster – heartbreaking and exiting. I was pretty much afraid all the time, but they treat you like you are family.”

One nurse’s thank you letter to a former patient

By Amanda Paragas, registered nurse, CHOC cardiovascular intensive care unit

The CHOC RN Residency Program is a 17-week program that is specifically customized to meet the requirements of the new nursing graduate to be successfully transitioned to becoming a professional pediatric nurse. Here, a recent RN Residency Program graduate pens a thank you letter to a patient she had the privilege of caring for during the RN Residency Program — one who impacted her as a nurse.

To you, my sweet girl, I owe many thanks.

Thank you for showing me humility and grace.

Thank you for showing me what compassion and love looks like from your perspective. Thank you for letting me watch you grow and develop your wonderful personality.

Thank you for showing me, and everyone else, that you are capable of so much more than anyone ever gave you credit for.

Thank you for showing me how strong and resilient such a young patient can be, without even knowing it.

Thank you for always being mighty and always fighting for what you wanted.

Thank you for never giving up despite being faced with unthinkable circumstances.

Thank you for reminding me that life should not be taken for granted and that all of our time is limited here on Earth.

Thank you for challenging me to be a better nurse and to always strive for excellence when caring for others.

And most importantly, thank you for letting me defend your childhood.

The August RN Residency/Fellowship Program is scheduled to begin on August 17, 2020. Applications will be accepted: May 15, 2020 through May 19, 2020.

Quinn goes home, thanks to CHOC’s cardiac high-risk interstage program

Like most parents, when Erin and Ryan were pregnant with their first child, it was an exciting and precious time. However, for them, they knew this would be a high-risk process since Erin has Type 1 diabetes.

Erin was seen regularly at University of California, Irvine (UCI) Medical Center for checkups on her and the baby because of her T1D. At week 20, Erin went in for an anatomy scan of the baby. This is when the baby is examined via ultrasound to make sure everything is growing and developing as it should. During an anatomy scan, clinicians also pay close attention to the baby’s heart.

Doctors noticed a few issues with the baby’s heart.  Erin and Ryan were referred to Dr. Nafiz Kiciman, a pediatric cardiologist at CHOC who specializes in critically ill newborns. Dr. Kiciman was able to confirm the unborn baby’s diagnosis: Tetralogy of Fallot (TOF) with pulmonary atresia (PA).

“I was very emotional hearing that my sweet little baby girl had been diagnosed with a major heart condition and would need multiple surgeries throughout her life,” says Erin. “I cried many tears thinking about a small baby going through so much.”

TOF is a congenital heart defect made up of four abnormalities. Since Quinn has a severe form that includes pulmonary atresia, she has five abnormalities. These include:

  • a hole in the wall that separates the lower right and left heart chambers
  • her aorta had been moved to the right
  • abnormal pulmonary arteries
  • a thickened right ventricle, and
  • no pulmonary valve to connect the right ventricle to the lungs.

Currently, the only treatment is open-heart surgery.

“Knowing surgery was going to be in the future was not easy, but I was also the only one who could feel her movements, and I knew she was strong,” says Erin.

Quinn’s journey in a brand-new world

Quinn was born on April 11, 2019 at UCI Medical Center, weighing 4 pounds and 4 ounces. Doctors determined she needed a higher level of care due to her heart condition, so when Quinn was four days old, she was transferred to CHOC Hospital’s neonatal intensive care unit (NICU).

“We had so many emotions as we left UCI without our baby and headed to CHOC,” Erin says. “We were thankful that Dr. Kiciman would be one of the many cardiologists that would be caring for Quinn. We met the NICU nurses and doctors, which made us feel even more comfortable.”

While in the NICU, Quinn’s job was to grow big enough to undergo her first heart surgery. As for Erin and Ryan, they were navigating learning how to be first time parents, with the added complexity of doing so for a child in critical care.

“We relied on the nurses and doctors to help us navigate through the first few weeks,” Erin says. “We had to learn how to change her diaper while she had various cords attached to her and hold her while she was connected to oxygen machines. We were thrown into parenthood really fast.”

Quinn gained 1 pound and 10 ounces in a month but she still wasn’t ready or big enough for a full heart repair. However, something needed be done to help the blood flow to her lungs. Dr. Richard Gates, director of cardiothoracic surgery at CHOC, performed a shunt operation to place a small tube between a body artery and the pulmonary artery.

quinn-half-birthday
Quinn celebrated her half birthday at CHOC.

After surgery, Quinn was moved to the cardiovascular intensive care unit (CVICU) at CHOC for six weeks. In the CVICU, she worked on breathing on her own and feeding with the help of her care team and a speech language pathologist (SLP).

SLPs work across CHOC’s healthcare system with a variety of patients. In Quinn’s case, they taught her skills and exercises to help her explore the movement and muscles of their mouths.

In the time Quinn worked with her SLP, she quickly developed good sucking skills, while still working on refining her swallowing skills. While she perfected these skills, Quinn’s medical team decided she would benefit from a gastrostomy tube, — or G-tube— a feeding tube placed through her abdomen so she could receive nutrition directly to her stomach.

The interstage

After 77 days at CHOC, Quinn finally got to go home through the cardiac high-risk interstage program.

This new home-monitoring program at CHOC was designed for babies with complex congenital heart disease. Families go home with a scale and pulse oximeter to record heartrate, pulse, weight and feeding. That information is then reported regularly to the child’s care team. The goal of this program is to provide families with an easy and reliable connection to their care team during the “interstage period”— the time between a baby’s first and second surgery.

“The interstage period is a critical time during which babies with certain heart conditions, like Quinn, are very fragile,” says Elizabeth Miller, a nurse practitioner dedicated to the interstage program. “Monitoring and evaluating the baby’s information on a regular basis has been proven to help early recognition of a possible serious problem and save lives.”

Future plans for the program include sending families home with iPads and a unique app that will allow families to record data, capture video and photos, and send message to care team members.

With the program, Quinn was also scheduled for biweekly visits to her cardiologists and a standard cardiac catheterization to evaluate her heart and plan for her future heart repair. During this procedure, Quinn’s heart team discovered a narrowing in a valve that needed emergent care.

The next morning, Quinn underwent surgery with Dr. Gates.  This complete heart repair would close the hole in her heart and widen her pulmonary arteries.

Road to recovery

Quinn’s recovery was tough and long. Her lungs were fragile, and she also developed necrotizing enterocolitis a serious intestinal disease common among premature babies.

Since Quinn was fragile during her recovery, Erin and Ryan were unable to hold her for the first month after surgery.

quinn-mom-after-surgery
Erin holding Quinn for the first time after surgery.

Though this time, Quinn’s family found comfort in being back at a place they already knew.

“We felt so comfortable going back to our ‘home’ in the CVICU,” Erin says. “The nurses, doctors and staff remembered our family and Quinn. During our time, Quinn showed that they will never forget her and got the nickname PQ, short for Princess Quinn.”

For the next seven weeks, Quinn made “baby toes in the right direction” — a saying from Erin on Quinn’s small but mighty progress, and a nod to her tiny feet. She developed a strong and feisty personality, and she wanted to do things in her own way and on her own terms. It was because of this that Erin and Ryan knew Quinn could get through anything.

Quinn today

Quinn is now at home and Erin and Ryan are soaking in the time they get to spend learning about their baby girl in a home setting. They have also seen her develop a love for watching sports—especially hockey, baseball and football.

quinn-holiday-home
Quinn celebrating the Fourth of July at home

Quinn is regularly followed by a variety of specialties at CHOC including cardiology, gastroenterology, pulmonology and hematology at CHOC. She will also need minor procedures, and another open-heart surgery when she’s older to replace the valve.

“Her journey is not over yet, but we’re equipped to handle what comes next for her medically,” Elizabeth says. “Quinn’s whole team here at CHOC has loved seeing her grow into the baby she was always meant to be.”

From CHOC mom to CHOC employee

“You look like you could use a good cup of coffee,” Maria would say from time to time to a tired parent at CHOC at Mission Hospital. “Oh yes!” they’d reply as she’d make them a cup.

Maria understands that a warm cup of coffee doesn’t just help sustain a parent who’s running low on sleep, but also gives them back a small sense of normalcy while their child is hospitalized.

Maria, a former department assistant in the administrative offices of CHOC at Mission who recently transferred to the laboratory at CHOC Hospital in Orange, knows this all too well. Her son Nehemiah, who is now a happy and healthy 11-year-old boy, was born with a heart condition and spent the first four months of his life at CHOC.

“If I see a mom struggling, I would try to do my best to be there for them because I understood what they were going through” she says. “They’re comforted knowing that someone understands.”

Delivering next door to CHOC

Thanks to a prenatal ultrasound, Maria and her husband Juan knew there was a problem with their son’s heart. But doctors told them they wouldn’t know the extent of the problem until he was born. Maria chose to deliver her son at St. Joseph Hospital in Orange so that they’d be next door to CHOC, and he would have close access to any specialized care he might need.

Shortly after Nehemiah was born, doctors performed an echocardiogram, a common and safe procedure that helps doctors look at how the heart is working. Dr. Anthony Chang, a pediatric cardiologist who is today CHOC’s chief intelligence and innovation officer, was present at Nehemiah’s birth.

“I was so scared for my son, but I felt like he was in good hands,” recalls Maria. “Dr. Chang explained Nehemiah’s condition and that he needed to be transported to CHOC for emergency surgery. He said it was a race against time.”

Nehemiah was born with interrupted aortic arch and ventricular septal defect, a condition with a large hole in the heart and blockage of the main artery feeding the body. Normally a hole in the heart would be considered bad news, but that hole helped him live because it allowed blood to circulate until corrective surgery could be done.

When Nehemiah was two days old, he underwent his first in what would become a series of heart surgeries, performed by Dr. Richard Gates, CHOC’s medical director of cardiothoracic surgery and co-medical director of CHOC’s Heart Institute.

After Nehemiah recovered from surgery in the cardiovascular intensive care unit (CVICU), he was transferred to CHOC’s neonatal intensive care unit (NICU). He had a feeding tube to help him eat, but as a step towards going home, he needed to work on eating on his own.

Nehemiah spent his first Christmas in the hospital, and his parents weren’t sure when they would be able to bring their baby home.

The day after Christmas, Nehemiah’s condition worsened when he contracted a blood infection called septicemia. Babies under 3 months can contract this because their immune systems haven’t developed enough to fight off overwhelming infections that originate elsewhere in their body. Once he was stabilized, his care team opened his chest so they could administer a vacuum-assisted closure (VAC) to help soak up the infection. A suction pump device connected to a tube with a foam sponge on the end, which was placed into Nehemiah’s chest to soak up the infection. His dressings were changed regularly for several weeks until the infection was gone. Once he recovered, his care team closed his wound and he was transferred back to the CVICU.

It takes a village

It would be another few months before Nehemiah would be able to go home. During that time, CHOC became home for his family. Juan would shuffle back and forth between hospital and the family’s home, bringing Nehemiah’s siblings Ethan and Giovanni, who were 3 years old and 10 years old at the time, to visit their baby brother. Maria’s mom would help the family and visit as well. During Nehemiah’s months-long hospitalization, Maria stayed by his side and never went home.

“It took a village to get my little guy through this ordeal,” Maria said.

A four-month hospital stay

Before Nehemiah was discharged after more than four months in the hospital, his parents received education and training from his doctors and nurses, so they would be able to care for him at home. He was discharged with a feeding tube, oxygen tank and medication.

“We were so excited to finally bring him home. In a sense, it was like we all got to finally go home,” Maria recalls. “My other two kids had essentially been living with their grandma, I had been at the hospital, and my husband had been going back and forth. We were finally together under one roof.”

Nehemiah’s heart was fragile, so as he grew up he would sometimes get sick more easily, and more severely, than his brothers and friends.

“If he would get sick with just a little cold, he would go from zero to 10,” Maria says.

Sometimes that would include seizures, which lead to two hospitalizations.

A second heart surgery

Nehemiah has undergone one additional surgery to repair a blockage that developed between his heart and great aortic artery, called a subaortic membrane.

“After his last heart surgery, his seizures stopped, and he started becoming normal,” Maria said.

These days, Nehemiah, who loves sports and music, visits CHOC every six months for check-ups with Dr. Chang to see how his heart and arteries are progressing as he gets older.

“His team always wants to know as he is growing, are the arteries growing with him? Eventually, he’ll need another procedure someday,” Maria said.

Despite semi-frequent trips to CHOC, Nehemiah is not afraid of doctors because for him, doctor appointments are second nature, according to Maria. Nehemiah has spent so much of his life in and out of CHOC that he refers to it as “My CHOC.”

A few years ago, when Maria was looking for a new job, her personal connection to CHOC was a big factor in her search, she says.

“I felt like CHOC was somewhere I’d want to work because I had so many positive experiences here as a mom. Everybody was very friendly. The nurses were good with all my kids, and with me too,” she said. “I remember that little things went a long way, and I try to bring that to my work here now.”

Learn more about the Heart Institute at CHOC Children's

Related posts:

A Surprise Diagnosis of Transposition of the Great Arteries: T.J.’s Story

By Buffy O’Neil, mom of CHOC patient T.J.

When my youngest son T.J. was born, we were so excited to complete our family. His nursery was ready to go and we had picked out the outfit he’d wear home from the hospital. I’d even done genetic testing, and everything about T.J. looked fine.

I wanted to deliver my son at St. Joseph Hospital in Orange because I knew if anything happened, which I didn’t expect it to, CHOC was right next door. I drove all the way to St. Joseph when I was in labor so that we’d be close to CHOC if we needed them.

Even though T.J. was a bigger baby than we anticipated and I had a rough delivery, everything looked fine right after he was born. A minute later he started to turn blue. They thought it was because of the rough delivery. They gave him some oxygen, but he turned blue again. That’s when we knew something was wrong.

My delivery team paged a neonatologist from CHOC who rushed over to evaluate him. Within minutes, there was a neonatologist in our room, and then T.J. was on his way to the neonatal intensive care unit (NICU) at CHOC, and my husband went with him. That neonatologist suspected there was a problem with T.J.’s heart, and brought in two pediatric cardiologists, Dr. Fahrouch Berdjis and Dr. James Chu. Dr Chu performed an echocardiogram, also known as a cardiac ultrasound, and diagnosed T.J. with transposition of the great arteries. They reassured me that I hadn’t done anything wrong during my pregnancy that caused this. TGA is due to abnormal development of the fetal heart, which occurs during the first eight weeks of pregnancy.

The heart has four chambers and four valves. The problem in transposition of the great arteries is that the two main arteries leaving the heart come off the wrong pumping chamber. This makes the blood flow incorrectly and makes the baby sick at birth. In order for babies with TGA to have a chance at survival, they need a diagnosis within hours of birth, and then an immediate procedure called a balloon artrial septostomy. During this procedure, a special catheter with a balloon in the tip is used to create an opening in the wall between the left and right atria, to improve the mixing of oxygen-rich and oxygen-poor blood.

On the first day of T.J.’s life, nothing happened as we had planned, but everything happened as it should. I can’t even imagine what it would’ve been like if something had gone wrong. I thank God every day that T.J. was born at St. Joseph Hospital and CHOC was right next door. The doctors told us that many babies that have to be transferred to a children’s hospital to be evaluated have died in the process. Because T.J. was born at a facility that’s literally connected to CHOC (via an underground tunnel), he was able to be diagnosed and had his procedure done within hours.

The first week of T.J.’s life was really scary. His right lung collapsed and then got a little stronger, only to have his left lung collapse. Babies with TGA need to have their first open heart surgery in the first week of life, and we weren’t sure if he was even going to live long enough to have that surgery. Doctors, nurses and respiratory therapists did everything they could to stabilize him.

Everything was very overwhelming. The baby who we had expected to be perfectly healthy was lying in a hospital crib with a lot of wires and monitors attached to him. He was so close to dying. All we could do was sit, watch and pray he would survive.

Every doctor we met with was so patient and explained everything in a way we could understand. We were overwhelmed and just trying to take it all in.

After a scary six days, T.J. was stable enough to undergo his first open heart surgery called an arterial switch. During that procedure, Dr. Richard Gates pediatric cardiothoracic surgeon and co-medical director of CHOC’s Heart Institute, cut open T.J.’s chest, cut his arteries and switched them so they were in the correct spot, and then stitched them into place.

Five hours after we kissed our son goodbye and saw him being wheeled back into the operating room, Dr. Gates came out to meet us in the waiting room. He said the surgery had been difficult but overall it went well, and now everything was all up to baby T.J.

In the week after T.J.’s open-heart surgery, he wasn’t breathing as well as we hoped he would. His team decided to do a cardiac catheterization procedure to determine why he still had a murmur and issues with his oxygen levels. During that procedure, they placed a wire, mesh device called a stent in a narrowed artery to keep it open and improve blood flow.

After this, T.J.’s oxygen levels improved, but his heart and lungs had been through a lot and needed to grow stronger before we could go home. Our next big hurdle was getting T.J. to eat on his own. Our feeding specialist was surprised at how fast he caught on to sucking and swallowing, but because his body was working so hard to recover from surgery, he was burning more calories than he was taking in. The doctors decided it was best to place a percutaneous endoscopic gastronomy tube (more commonly known as a G-tube or feeding tube) directly into T.J.’s stomach so he wouldn’t have to work so hard to eat, but he’d still get the calories he needed to grow stronger.

Another unexpected hurdle was when T.J. started having withdrawals from the pain medication he had been placed on after surgery. A registered nurse/pain specialist was assigned to us in order to evaluate how best to help T.J. cope. She put him on a 30-day weaning plan and after a few days he started improving, and soon we were on our way home!

We were so happy to finally take our baby home, almost six weeks after he was born. We went home with a lot more than we came with, including a medication schedule with six different drugs outlined by his nurses, plus a breathing machine.

We knew T.J. would need another open-heart surgery before his first birthday. We had periodic appointments with his cardiologist Dr. Chu, and a feeding specialist as well. A few months later, Dr. Chu performed a cardiac ultrasound or echocardiogram to see how T.J.’s heart was working. He told us that even though T.J. had grown a lot and was healthy, it was time for his surgery. His arteries were not growing enough to keep up with him.

T.J.’s second open heart surgery occurred when he was six months old, and he had a third surgery when he was 18 months. Each of those were to expand arteries to allow for better blood flow. As a parent, I always appreciated Dr. Gates’ honesty. He told us that these were intense surgeries, and that T.J. would need blood transfusions during them to compensate for blood loss during surgery.

after-heart-surgery-transportation-of-the-great-arteries
T.J. after surgery

After the second and third surgery, we spent a week in the cardiovascular intensive care unit (CVICU) at CHOC. We were blown away at how the nursing staff cared for our entire family during that time. We were putting our son in their hands, but they didn’t just take care of him. They took care of all of us. Years later, the nurses that cared for him when he was a baby still want to hear updates about T.J. and how he’s doing in school.

For the first 18 months of T.J.’s life, it felt like we were at CHOC all the time. It was an unexpected start to my son’s life, and at the time, it was devastating. I felt like I was the only mom experiencing this, and if there’s any moms reading this I want you to know that you’re not alone. There are people out there who understand what you’re going through. Ask your child’s care team if they can put you in touch with other families who may be willing to share their stories with you. For my husband and me, being able to meet people with the same conditions, and to share stories with other adults who have been through what you’ve been through was incredibly helpful.

TJ-today
Today, T.J. is a happy eight-year-old who loves sports and is a straight-A student.

Today, T.J. is a happy eight-year-old. He’s very athletic and loves to play sports, and I’m proud to say he is a straight-A student. When he feels self-conscious about his scars, we remind him how special and strong he is. Even though his life has been filled with several surgeries and countless doctor’s appointments, he has no anxiety about going to the doctor’s office because he’s always treated so well there. When T.J. was a baby we saw Dr. Chu monthly, and now that his heart is doing so well, we only have to go twice per year.

As for my heart, I have a very special place in it for CHOC― especially for Dr. Gates and Dr. Chu. Both of them are in photos in T.J.’s room. We remind them at every appointment that they are the reason T.J. is alive.

Learn more about the Heart Institute at CHOC Children's

Related posts: