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.)

When the cardiologist becomes the patient — and parent

Dr. Anthony Chang had been a physician for 40 years — and had cared for thousands of medically complex children with fragile hearts — when his own child needed heart surgery. Around the same time, he became a heart surgery patient himself. Experiencing healthcare from these new perspectives cemented the physician leader’s view on the importance of physicians spending quality time with patients.

Doctor becomes the parent

Dr. Chang is a pediatric cardiologist, chief intelligence and innovation officer at CHOC, and medical director of the Sharon Disney Lund Medical Intelligence and Innovation (MI3) Institute at CHOC.

Dr-Anthony-Chang-CHOC
Dr. Chang is a pediatric cardiologist, chief intelligence and innovation officer at CHOC, and medical director of the Sharon Disney Lund Medical Intelligence and Innovation (MI3) Institute at CHOC.

Several years ago, he was caring for a 2-day-old baby girl named Emma who had been transferred to CHOC’s neonatal intensive care unit (NICU). He immediately ordered an echocardiogram, a non-invasive procedure used to assess the heart’s structure and function.

“I remember doing her echocardiogram and thinking this is one of the most complicated hearts I had seen in a while,” Chang says.

Emma was diagnosed with hypoplastic left heart syndrome. She saw Dr. Chang around 50 times over the next two years, while she lived with a foster family and waited to be adopted.

Around age 2, she was admitted to CHOC Hospital in Orange because she was struggling to breathe.

“I looked down at her, and even though it was hard for her to breathe, she gave me the biggest smile and my heart melted,” Dr. Chang says. “I was dismayed to find out her last adoption attempt was not successful. I told her foster mom the next attempt would be successful – because it would be me.”

Dr. Chang learned that Emma had a younger biological sister who was also up for adoption. Wanting to keep them together and grow his family, he adopted her younger sister, Olivia, as well.

Starting his own family was a milestone Dr. Chang wasn’t sure was in the cards for him.

“I had reconciled to the fact that my mission in life was to help children all over the world, and maybe I wouldn’t be blessed with my own child. I spend all day with kids; maybe I wouldn’t have my own. And that was OK,” Dr. Chang says.

Once Dr. Chang became Emma’s foster dad, a step toward formally adopting her, he resigned as her cardiologist. Her care transitioned to Dr. Michael Recto, another pediatric cardiologist at CHOC.

At CHOC, parents are considered part of the care team – whether they are trained doctors or not. CHOC practices patient- and family-centered care, a partnership between staff and families.  CHOC encourages all parents to be active members of the care team by asking questions, sharing knowledge and making decisions.

“Emma is in good hands with Dr. Recto,” Chang says. “Her entire team at CHOC has been really great at letting me have input as a clinical expert, but also letting me just be a dad when I wanted to be.”

Throughout the next few years following Emma’s adoption, she spent a lot of time at CHOC – as a patient for check-ups at the cardiology clinic, and as a daughter tagging along to her dad’s office.

“Whenever she came to the CHOC clinic, she felt at home,” Chang says.

By the time Emma was 3, her heart needed more surgery.

The doctor becomes the patient

Just as Emma was back on her feet, Dr. Chang started feeling sick. He was at his home when he noticed that he felt short of breath when lying down, but not standing. Dr. Chang went into diagnostic mode, trying to find a reason for his symptoms.

After ruling out a heart attack, the cardiologist still knew that something serious was happening.

“I better get myself to the hospital,” he told himself, and took a ride-sharing service to his nearest emergency room.

Doctors ordered a CT-scan and an echocardiogram to get better imaging of his chest and heart. Dr. Chang was diagnosed with acute rupture of the mitral valve. This, the doctors said, was likely a congenital weakness that had, over time, weakened until it finally ruptured. Dr. Chang was given medication to stabilize his heart, and then he was transported to another facility for additional testing and surgery to repair the ruptured valve.

As a loving father, he was eager to recover quickly and get home to his family. As a clinician passionate about artificial intelligence in medicine, he was eager to get back to work.

“I stepped up my rehab schedule. My nurses and physical therapists believed in me. While other patients were taking afternoon naps, I would take afternoon laps around the hallways,” Dr. Chang says.

The nurses who supported Dr. Chang’s recovery served as a reminder of how big a role nurses play in patient care and patient experience.

“Having been a physician for almost 40 years, I already had a deep appreciation for everything nurses do day in and day out to care for patients and support physicians,” Chang says. “But becoming a patient myself allowed me to see that from a different perspective.”

Becoming a patient also reminded Dr. Chang of the importance of physicians spending quality time with their patients. Dr. Chang was impressed by how the renowned surgeon who treated him spent so much time connecting with him

“Shake the parents’ hands, touch someone’s shoulder as you introduce yourself and find out who everyone in the room is. They are in that room because they are important to your patient,” Dr. Chang says. “Even though I’m their doctor, it’s their space, not mine. Doctors need to be sensitive to that.”

Father and daughter back on their feet

Today, Emma is “doing very well” says her dad — and former cardiologist — Dr. Chang.

Dr Chang and Emma
Dr. Chang and Emma

Dr. Chang is back at work after recovering from his own heart surgery, with the renewed perspective of having been a patient — and parent of a heart patient.

“Unless you see something from another domain or perspective, you won’t have the full picture,” Dr. Chang says. “We’re all going to be patients eventually.”

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.”