Two generations of CHOC heart families

Liam, age 20 months and Anaya, age five months, are cousins who both happen to be CHOC heart patients. Liam was diagnosed with a heart defect in utero and needed heart surgery when he was a few months old. Shortly after Liam’s surgery, his younger cousin Anaya was also diagnosed with a heart defect before she was born – so far, she has not needed surgery but continues to be closely monitored by CHOC experts.

Liam and Anaya
Liam and Anaya

Learning that your child has a heart condition and might need surgery can be scary and stressful for any parent or caregiver. However, both Liam’s mom and Anaya’s mom – sisters Jasmine and Jennifer – were already familiar with CHOC’s Heart Institute, having been patients themselves.

sisters Jasmine and Jennifer
Jasmine and Jennifer

Jasmine, the older sister and Liam’s mom, was diagnosed with a ventricular septal defect (VSD) when she was a baby. She wasn’t eating, was losing weight and was crying more than normal – and eventually, she was referred to CHOC, where her VSD was diagnosed. A VSD is a birth defect where there is a hole in the wall that separates the two lower pumping chambers of the heart. Doctors at CHOC monitored Jasmine’s VSD for a while to see if it would close on its own, but eventually it was clear that Jasmine needed heart surgery, which she had at CHOC at age 4.

Jasmine at age 4, after undergoing heart surgery at CHOC.

When Jennifer, the younger sister and Anaya’s mom, was born, she exhibited the same symptoms that Jasmine had shown. Doctors at CHOC diagnosed Jennifer with an atrioventricular septal defect – where there is a hole both between the heart’s  upper chambers and the lower chambers with a single valve inside, instead of having two. She had two heart surgeries, the first at a few months old and the second at age four.

Both sisters had periodic checkups with CHOC cardiologists after surgery, and their appointments became less frequent as they grew older and stayed healthy. Jennifer still sees Dr. Michael Recto, who carefully follows adult and pediatric patients with congenital heart disease.

“Cardiac surgery for patients with severe congenital heart disease is not a cure. Lifelong follow-up is required with a congenital heart disease specialist,” explains Ryan Hansen, director of CHOC’s Heart Institute.

CHOC heart patient family
Jasmine, Jennifer, Liam and Anaya

When Jasmine and Jennifer grew up and thought about starting their own families, having heart conditions and a history of heart surgery posed special considerations. To be safe, each mother’s cardiologist asked to see her more frequently during pregnancy for additional monitoring given the known increased risks of heart complications, pre-term delivery, cesarean section and bleeding after delivery.

Jasmine and Liam

When Jasmine was 20 weeks pregnant with Liam, a routine anatomy scan showed that the baby had a heart condition. Jasmine was referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology. A definitive diagnosis wouldn’t be possible until Liam was born, but throughout the pregnancy Dr. Doshi performed fetal echocardiograms, an ultrasound test to evaluate Liam’s heart.

“I was scared to learn that my baby might need heart surgery,” Jasmine says. “We weren’t sure if Liam would need emergency surgery when he was born, but Dr. Doshi talked to my OB/GYN and helped me make a plan.”

At the delivery hospital, a neonatal intensive care unit (NICU) team was in place for Liam’s delivery in case he needed urgent care. He was healthy, but he stayed in the NICU for 11 days for extra monitoring.

Once Liam went home, he began seeing Dr. Doshi for check-ups on his heart.

A Dr. Doshi patient
Liam in a onesie his mom had specially made to honor his cardiologist Dr. Doshi.

“Having a baby with a heart defect is scary, but once I saw Dr. Doshi, I felt calm,” Jasmine says. “Dr. Doshi explains complicated things in a way that make sense, even if you don’t have a medical background. She even draws hearts and diagrams. I just knew that at the end, no matter what happened, it would be OK.”

Over the next few months, it was clear that the hole in Liam’s heart wasn’t closing on its own. As Liam approached seven months old, Dr. Doshi told Jasmine it was time to talk about surgery.

“Finding out my baby needed heart surgery brought me back to my own experience,” Jasmine said. “I was old enough when I had surgery to have memories, and I didn’t want my baby to experience that or be scared. But I knew that if he had surgery as a baby, not only was it in the best interest of his health, but he wouldn’t be old enough to remember being hospitalized. I also knew that technology had progressed a lot since my own surgery, so I knew my son would be in good hands at CHOC.”

Liam underwent surgery with Dr. Richard Gates, a CHOC pediatric cardiothoracic surgeon and co-director of CHOC’s Heart Institute. After a successful surgery to close the hole in his heart, Liam spent three days in the hospital to recover. The first time Jasmine saw her son in the cardiovascular intensive care unit (CVICU) after surgery was emotional.

“It’s hard to see your child connected to all these tubes and machines,” Jasmine recalls. “But I’m grateful that a CVICU nurse pulled me aside before I went in Liam’s room and told me what to expect so I could prepare myself. It could have been a shocking image, but she prepared me for it.”

Jasmine also felt grateful for the education she received from Dr. Gates.

“Talking to Dr. Gates before and after the surgery made me more comfortable,” Jasmine recalls. “Dr. Gates explained everything in a way that was easy to understand.”

heart patient after surgery
Jasmine and Liam at CHOC after his heart surgery

Despite a network of support, and knowing her child was in good hands, the process was hard on Jasmine as a mother.

“I didn’t think I had the strength to have my child go through open heart surgery,” Jasmine says. “But Liam made me a tough mom. He made me stronger.”

Despite undergoing open heart surgery at seven months, Liam never regressed on his milestones. He loves to climb, is very independent and is a social butterfly.

anniversary of heart surgery
Liam celebrates the anniversary of his heart surgery.

“Liam is so active. If you didn’t know he had open heart surgery, or happened to see the scar on his chest, you would have no idea what he had been through,” Jasmine says.

Jennifer and Anaya

For Jennifer, knowing she had an older sister who had gone through surgery made the experience easier for her. Jennifer had surgery at age 4 to repair her AVSD and spent a week in the hospital recovering. At the time, their dad was working full time and their mom was taking care of three kids, so Jennifer spent quality time with her CHOC nurses while she was recovering.

“My nurses took good care of me. They gave me wagon rides around the unit, and I felt popular because everyone waved at me,” Jennifer recalls.

When Jennifer grew up and was ready to start her own family, she had more frequent check-ups during pregnancy given her heart condition. A routine anatomy scan of her baby raised concern for a VSD.

pregnancy photo
Jennifer poses while pregnant with Anaya.

“In the back of my mind, I knew it was a possibility that my daughter would have a heart condition like other people in our family, but I thought, ‘Oh, there’s no way. The chances are so small,’” Jennifer recalls. “At first, hearing my daughter might have VSD, I felt like I was floating; the news didn’t sink in. Then I was in denial.”

Jennifer and Anaya after birth
Jennifer and Anaya in the hospital after Anaya was born.

Jennifer was referred to Dr. Doshi – a familiar face, since Dr. Doshi had been Jennifer’s own cardiologist when she was a little girl.

“It is one of the greatest honors of my career to care for Jasmine, Jennifer, Liam and Anaya,” Dr. Doshi says. “As a physician, our truest joy of practice stems from the opportunity to become a part of their family through the care we provide.”

Anaya heart testing at CHOC
Anaya undergoes testing at CHOC.

Ongoing fetal echocardiograms throughout Jennifer’s pregnancy showed the VSD in Anaya’s heart was closing on its own. When Anaya was born, she spent one day in the NICU for monitoring. Anaya has had ongoing check-ups with Dr. Doshi to monitor her atrial septal defect, a hole between the upper chambers of the heart. Doctors also monitor her bicuspid aortic valve, meaning her aortic valve only has two cusps instead of three. There is a chance that Anaya will need surgery in the future, but also a chance that the hole will become smaller over time.

Anaya
Anaya

Advice to other moms

As their little ones grow up, Jasmine and Jennifer are eager to not only watch them develop, but to impart lessons they’ve learned through their own experiences as heart patients.

Liam and Anaya
Liam and Anaya

“I never saw myself as not being able to do this or that because of my heart condition; I always saw myself as normal,” Jasmine says. “I want that for Liam, and I know my sister wants that for my niece.”

The sisters offer these additional reminders to other parents of babies with heart defects:

  • Get informed and ask questions – as many as you need – until you feel comfortable.
  • It’s scary to know your baby will need surgery but remember it will be beneficial for them in the long run.
  • Having a baby go through surgery is often a harder experience on you as a parent, than it is on your child.
  • It’s very likely that your child’s heart condition will not limit their interests and activities as they grow up. (Jasmine and Jennifer both played competitive sports growing up.)

A surprise heart defect diagnosis in utero: Teddy’s story

By Elle Kennedy, mom of CHOC patient Teddy

When I got pregnant with my son Teddy, my husband and I planned to follow the route we took during my pregnancy with our daughter Charlotte—a midwife and practice we were already familiar with. In the years since our daughter had been born, that office had implemented a new rule—all babies must undergo a fetal echocardiogram, an ultrasound test during pregnancy to evaluate the heart of an unborn baby.

My pregnancy had been normal, so when I went in for this fetal echo around 23 weeks, I didn’t even have my husband Jeremy come with me. We were grateful for the precautionary test, but we didn’t expect for them to find anything abnormal.

What they found was anything but normal.

Teddy was diagnosed with anomalous pulmonary artery off the aorta. Typically, the blood is supposed to go through the heart and then into the lungs and then back through the other chamber of the heart. Teddy’s diagnosis meant that one of his lungs was attached in the wrong order. This lung was getting blood that was already oxygenated by the other lung, which can make the misaligned lung really sick. The lungs are not supposed to receive oxygenated blood; they’re supposed to oxygenate the blood.

Sometimes this condition isn’t caught in utero, and the baby seems healthy at birth, but a few months down the road they have breathing issues and the detective work to find a diagnosis begins. We were fortunate that this was diagnosed before Teddy was born, so we could be prepared.

Making a new plan

I quickly understood that the rest of my pregnancy would look different than my first, and that my birth plans would change. One of my first thoughts was, “I need to find a doctor who can deliver at St. Joseph Hospital in Orange, so that we can be right across the street from CHOC.”

We found an OB/GYN and were also referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology.

In the weeks leading up to Teddy’s birth, we had a big meeting with Dr. Doshi; Dr. Richard Gates, Teddy’s cardiothoracic surgeon; many other CHOC doctors; my OB-GYN and the St. Joseph labor and delivery team. There were 15 people in the room with us, ready to share the game plan for Teddy’s birth and immediate care after he was born. Everybody went around the room, in order of what would happen to me and Teddy. It was like “OK, when you come in, here is going to be the birth team. Once he’s born, here is the team taking over. When he goes into surgery, here’s that team.” Everybody got to walk us through what they were going to do and what the stages of care would look like. That experience was amazing for us. It was really nice to be able to meet everyone ahead of time.

This was an entirely new experience for us. We had a lot of fear going into it. As a parent, you hear open heart surgery and it sounds so scary. Getting to talk to people on the team and learn about their area of expertise, and have them tell you what to expect, was a very relieving experience for us. They thought through every step of the journey.

After a lengthy but healthy delivery, Teddy was born weighing seven pounds, 14 ounces. After a quick check-up to ensure his heart was doing OK and he was breathing properly, we were able to spend 30 minutes with him before he needed to be taken to CHOC.

Teddy spent four days in the cardiac neonatal intensive care unit (NICU) at CHOC before undergoing open heart surgery.

During this two-and-a-half-hour surgery, Dr. Gates removed the right pulmonary artery from the aorta and transferred it to its proper position on the main pulmonary artery.

Caring for the whole family

After surgery, Teddy spent two weeks in the cardiovascular intensive care unit (CVICU). We would visit him every day, and then go home in the evenings to put our daughter to bed. We knew our son was in good hands, and we wanted to make this time as normal as possible for his big sister.

Although the hospital staff was there to care for Teddy, they helped us prepare our daughter for her first hospital visit, as well. When Teddy was first brought to the CVICU, he was hooked up to all kinds of machines and wires. That can be scary for siblings to see. They encouraged us to wait until he was closer to going home, so that it would be a more positive experience for Charlotte. We also knew that Teddy would return to this hospital many times for other procedures and check-ups, and we didn’t want Charlotte to think of a hospital as a scary place. When she did come in, it was amazing. She loved getting to see her baby brother, and all she wanted to do was hold him. The staff was so attentive to her. Even though this wasn’t the way we intended to welcome our son into the world, it turned out to be an amazing experience.

To thank the hospital staff, and to help Charlotte feel more involved in her brother’s care, we brought small felt hearts on safety pins for her to give out to his nurses and doctors. She walked around the unit handing them out and said, “Thank you for taking care of Teddy.” It’s a tradition we’ve continued at appointments to this day.

When Teddy was around 3 weeks old, we finally got to bring him home. His sister was so happy! He had a bandage on his chest so he couldn’t do tummy time right away, but other than that it was a normal routine.

Teddy’s first angioplasty

Three months later, we came back to CHOC for an angioplasty. Scar tissue was building where they had stitched the artery in place, so the artery wasn’t growing properly. During this procedure, they made a small incision in an artery in Teddy’s thigh, inserted a small balloon and snaked it up to his heart, and slowly expanded the balloon in order to safely break up the scar tissue and gently stretch the artery. This time, we only had to spend one night in the hospital for observation.

Teddy had a follow-up angioplasty when he was three years old. He will need another angioplasty in another three to five years, depending on how his artery grows in relation to the rest of his body. Someday, he will have a stent (a tiny mesh tube) put in to permanently keep his artery open.

pre-op room with toys
Teddy playing with toys before an angioplasty,

Throughout this process, CHOC has been amazing for us because they’re willing to take our say into consideration. Our team always asks us, “Are you comfortable with this plan?” We have been involved in the decision-making progress every step of the way.

Teddy today

Teddy is smaller than the average 3-year-old boy. Personally, I think it’s a blessing that he’s growing a little slower than other kids his age. It’s giving his heart time to grow at a slower pace because the rest of his body isn’t growing as fast. Other than his smaller than average stature, he’s a healthy kid. He underwent occupational and physical therapy for a while to help him meet milestones, but he graduated from those therapies at 18 months and now he is hitting or exceeding all of his milestones.

These days, we see Dr. Doshi every six months for a check-up. Despite many appointments and procedures over the last few years, Teddy has no fear of the doctor. When he sees a Choco Bear logo on a billboard, he points and says, “Mom that’s where I went and had my operation. They took care of me there.”

If you look at him, you wouldn’t know he had a heart condition. Unless you see him shirtless and notice his scar, you would think he was just a typical kid. He talks well for his age, and he loves anything with wheels. He’s a very brave young boy, which we knew from day one.

bumblebee boy costume
After his last angioplasty, Teddy requested a photo shoot dressed as his favorite superhero. Bumblebee Boy.

A message to other moms

To any other moms with hospitalized babies, know that you are not alone. For me, the hardest part of this journey was not knowing anyone else whose baby was hospitalized after birth. Know that there are other parents out there who understand what you’re going through.

This journey could have been a scary experience for our family, but I never imagined it could actually be a positive experience. I thought we would just have to get through this, but Teddy has so much fun laughing and playing with the nurses who take care of him before and after procedures.

CHOC has done a really great job of thinking through everything from a patient perspective and a parent perspective. They try to create the best possible experience from start to finish for everyone involved. They make it a reassuring process for parents, a happy experience for siblings, and a safe experience for patients.

At CHOC, everyone’s goal is to make a child’s experience a positive one.

Learn more about the Heart Institute at CHOC Children's

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Contending with Coarctation of the Aorta: Ella’s Story

Lindsey and Oliver Nam had hoped to hold a special celebration to mark their daughter Ella’s 100th day of life – a tradition in some Asian cultures to commemorate an important milestone for a family.

But a big celebration with friends and family would need to wait.

Shortly after birth, Ella was diagnosed with coarctation of the aorta, a congenital heart defect. While the family awaited next steps, they couldn’t risk her being in a large crowd and getting sick.

“It was hard,” Lindsey says. “That’s the scariest thing to think about. You just brought them into the world and now something is wrong.”

The journey begins

Tests conducted just after Ella’s birth in December 2017 first revealed a heart murmur, an unusual sound made by blood circulating through the heart’s chambers or valves, or through blood vessels near the heart.

After two extra days in the hospital, Ella had progressed nicely and the new family of three headed home. On the horizon were follow-up medical appointments to determine whether Ella’s murmur was harmless or caused by an underlying heart condition.

At home, Ella was gaining weight, doing well and reaching milestones – so when a pediatric cardiologist made his diagnosis, her parents were surprised.

ella-dog

Coarctation of the aorta means that a large artery in Ella’s heart that carries oxygen-rich blood from the left ventricle to the body was too narrow. This can restrict the amount of blood that could travel to the lower part of Ella’s body.

If the condition went untreated or the aorta didn’t widen on its own, Ella’s heart would need to work harder and harder to pump blood, leading to a possibility of stroke or heart failure.

But because Ella was healthy and doing well, the family considered alternate timelines for treatment and sought second opinions.

A big decision

When Ella was about 7 months old, though, surgery became a reality. After more tests, experts at the CHOC Heart Institute recommended Ella undergo surgery to correct the problem as soon as possible.

“It was hard to hear,” Lindsey says. “That’s when we started to get worried.”

Dr. Richard Gates, a pediatric heart surgeon and co-medical director of the Heart Institute, would perform the procedure. By working through Ella’s back, near her shoulder blade, he would widen the narrow artery.

Heading into surgery day, Lindsey and Oliver were frightened, but maintained a brave face for their daughter.

ella-cvicu
Ella recovering from heart surgery in CHOC’s cardiovascular intensive care unit (CVICU).

“Going into it and preparing for it, I was strong,” Lindsey said. “I didn’t want her to think anything was wrong.”

The procedure went well, but Lindsey’s strong façade crumbled when she saw Ella afterward.

“The worst part was when I saw her after the surgery,” she says. “Everything was fine but seeing her sedated and with all these tubes in her – oh, my goodness. It was a lot to handle. I broke down.”

Recovering

Ella was in great hands at CHOC’s cardiovascular intensive care unit, where she spent five days recovering after surgery. By the fourth day, Ella was able to keep down milk and even ventured outside for a wagon ride. On the fifth day, the family of three headed home.

ella-gates
Just four days after surgery, Ella was well enough to venture outside for a wagon ride. Here she is pictured with her heart surgeon, Dr. Richard Gates.

“It’s the best feeling ever,” Lindsey said.

Several months after surgery, Ella has had some follow-up visits and there remains a chance that she may need surgery again someday.

For now, though, she is healthy and right on track developmentally. Ella is crawling and pulling herself up on furniture, with first steps nearly within reach.

Rather than worry about the future, the Nams are mindful to focus on Ella’s happiness and health – and they’d offer the same advice to another family contending with a heart defect.

“I would just say remain calm and just take it one day at a time,” Lindsey says. “Also, do your research and try to get second and third opinions.”

Time to celebrate

The family has also been making up for some lost opportunities. In lieu of the big 100th day celebration the Nams never got to host, they went big when it came to commemorating Ella’s first birthday a few months ago.

After all, they had so much to celebrate.

“She’s accomplished so much,” Lindsey says.

ella-birthday
Ella’s first birthday celebration

Learn more about the Heart Institute at CHOC Children's

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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

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Warming Up to Wound Care: Nico’s Story

Nico’s birth was full of surprises for his mom Jennifer. The biggest one being that he was a boy, when all along she had been expecting a daughter. That wasn’t the only unexpected realization. He lacked a fully-formed tibia (the bone that connects the knee and ankle), was missing his left thumb, and had several structural heart disease defects, none of which had been diagnosed prenatally.

Unexpected heart defects

Nico was diagnosed with unbalanced AV Canal (AVC), Anomalous Pulmonary Venous Connection (APVC), and Ventricular Septal Defect (VSD) due to the underdevelopment and abnormal formation of his heart and major blood vessels. Jennifer learned early on that her son’s heart conditions were treatable with a series of open heart surgeries and/or cardiac catheterization procedures.

The day after he was born, Nico was transported to CHOC. He underwent his first heart surgery when he was only three days old, under the care of Dr. Richard Gates, a CHOC pediatric cardiothoracic surgeon and co-director of the CHOC Heart Institute. Nico’s second heart surgery happened before his first birthday, and he’ll have a third heart surgery later this year.

nico-today
Nico, who is today a happy pre-K student, has already endured several surgeries.

“Despite Nico’s significant heart condition, he has responded well to each surgery, becoming stronger right before our eyes,” says Dr. Gates. “I look forward to his final surgery which should allow him to continue to be active and happy.”

Jennifer knew that someday Nico would need to have his leg amputated below the knee, Since Nico’s tibia bone connecting his knee and ankle wasn’t fully formed, it meant his ankle didn’t have the support it needed. Her original plan was to have that surgery performed at another facility closer to their home, when she was told they weren’t comfortable operating on his leg due to his heart conditions. Soon after, she and Nico were at CHOC meeting an orthopaedic specialist to discuss a prosthetic for his leg.

“I didn’t know what we were going to do, but during his prosthetic appointment, we learned CHOC would be comfortable performing his surgery, and could schedule it for just a few weeks later! I was thrilled we could do it earlier because I don’t want him to get to a point later on in life when he remembered or missed when he had more of a leg,” Jennifer recalls.

Shortly before his third birthday, Nico underwent surgery to amputate his leg below the knee under the care of Dr. Francois Lalonde, a CHOC pediatric orthopaedic surgeon.

nico-toy-after-wound-care
In addition to stocking our holiday toy store, donations that pour into our annual holiday toy drive bring joy to patients year round. After one wound care appointment, Nico is surprised with a new toy for being so brave.

After spending just one night in the hospital ―including a checkup with his cardiologist, Dr. Nafiz Kiciman, to make sure his heart looked alright after surgery― Nico was discharged.

“Nico is a brave and courageous young boy with an easy-going personality,” says Dr. Lalonde. “He has demonstrated great resilience and coping skills following surgery and wound care, and is already adapting well following the amputation of his left ankle.”

His doctors told his mom he should take it easy for a few days, but as soon as his cast was removed, he was quickly back to his old habits of climbing on furniture and jumping on pillows.

“I never want my son to have the mentality that he is limited,” Jennifer says. “Kids can sense if their parent is worried or scared, and I didn’t want him to feel like that. He’s too young to feel anxious on his own, so I made sure I didn’t bubble wrap him and let him play like his normal self.”

The importance of pediatric specialists for wound care therapy

The week after surgery, Nico and his mom started coming back to CHOC a few times per week for wound care, where specially-trained pediatric physical therapists would clean and rebandage his leg. In between those appointments, Jennifer cared for the wound at home.

“At his first appointment, he saw a new person walking into the room with all these supplies he had never seen before, and it was a lot for him to take in. He covered his eyes and wiggled around during the appointment,” Jennifer recalls.

To make Nico feel at ease, his physical therapist Sandy started letting him help her care for his wound.

nico-before-and-after-wound-care
Left: Nico was naturally apprehensive during his first wound care appointment, before he realized it didn’t hurt and could even be fun. Right: Nico during a subsequent wound care appointment, where he was rewarded for his bravery with a larger-than-life Mickey Mouse balloon.

“I wanted to be honest with him about what they’re going to do at this appointment, but frame it in a positive way so he knows it’s for his own good and he doesn’t have to be scared. It’s important to explain things in a way that he will understand,” Sandy says. “If you’re honest with the child, they’ll start to trust you. If you say, “this won’t hurt” and it hurts, then you’ve lost their trust.”

Once Nico was involved, he immediately understood that he didn’t have to be scared of wound care, and that it could even be fun.

Now, when Sandy finishes one step, he grabs the next supply that she’ll need. He almost sees it as a game. “Ok Nico, we’re done with this part. What part is next?” Sandy says to him.

nico-during-wound-care-appointment
To help calm Nico’s fears during wound care, his pediatric physical therapist involved him in the process.

These days, before each appointment, when Jennifer asks Nico if he wants to go see Sandy, he squeals and claps with delight.

“I tell him, “Let’s go see Sandy! She’s going to clean your owie and make it feel better.” My positive mentality was contagious for him. I was excited, so he was excited,” Jennifer says. “If the kid sees the parents squeamish during wound care or sees a worried expression on their face, then the kid will be apprehensive. Whenever we come to wound care appointments I make sure I speak to him in a very upbeat, positive way so he feels like physical therapy is fun and not something to be scared of, which helps him to relax. Positive energy is contagious.”

Continuity of care has also helped Nico feel more comfortable.

“It has helped him to have the same one or two physical therapists each time, so it’s a familiar face.”

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Nico’s Star Wars-themed prosthetic.

Once Nico’s leg was fully healed from surgery, he resumed physical therapy, was fitted for a prosthetic, and started walking. In between all of that, he continues to love anything Star Wars, playing Ninja Turtles, coloring and attending pre-Kindergarten classes.

Read FAQs about pediatric wound care at CHOC

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