CHOC Children’s Volunteer Forms Friendship with Patient

After retiring from a storied career in corporate communications and marketing, Fran was looking to give back in her community. Having spent much of her adult life in Orange County, she was aware of the impact CHOC Children’s has had on the place she has called home for decades.

“When I was exploring volunteer opportunities at CHOC, I knew that I wanted a position where I could engage with patients,” Fran recalls. “When volunteer services described all that the Family Resource Center offers to patients and families, I knew it was the perfect place for me.”

Today, Fran staffs the Family Resource Center (FRC) located on the second floor of the Bill Holmes Tower. The FRC is a space where patients and families can read books and choose one to take home, rent movies, play games, utilize a computer lab, research their child’s diagnosis with medical and developmental literature, and decompress with arts and crafts.

Through her weekly shifts and as host of the FRC’s weekly Story Time, which is broadcast to all patient rooms within CHOC’s Orange campus, Fran has formed a special bond with 12-year-old patient Evelyn, who has been a CHOC Children’s patient for nearly her entire life.

Before she was born, Evelyn was diagnosed with complex congenital heart disease. Her heart defect is commonly associated with Trisomy 21 (more commonly known as Down syndrome). Two valves within Evelyn’s heart― the mitral and tricuspid valves― as well as the walls separating the heart chambers, did not develop correctly, which caused the right side of her heart to be underdeveloped and non-functional. Unfortunately, this condition can’t be “fixed,” only managed. This is typically done through three surgeries: the BT or Central Shunt, normally in the first days of life; the Bidirectional Glenn, usually between 3 and 9 months of age; and the Fontan, usually between 2 and 5 years.

In a typical heart, the right side of the heart pumps deoxygenated blood to the lungs, and the left side pumps oxygenated blood to the body. Because Evelyn’s right heart is too small to carry out its normal function, Evelyn has what’s referred to as single ventricle physiology. The purpose of the surgeries is to re-route the vessels around the heart so the one functional chamber pumps oxygenated blood to the body, and the deoxygenated blood bypasses the heart and passively drains back to the lungs.

Evelyn underwent her Central Shunt procedure at two months old to establish reliable blood flow to her lungs. Her Glenn procedure took place just after her first birthday to route the blood flow from the upper part of her body to her lungs. Her third heart surgery, the Fontan, took place when she was seven years old to re-route the remaining blood flow to her lungs. All three surgeries were performed by Dr. Richard Gates, director of cardiothoracic surgery at CHOC Children’s, co-medical director of the CHOC Children’s Heart Institute, and CHOC’s surgeon-in-chief.

In addition to check-ups for her heart every few months with pediatric cardiologist Dr. Pierangelo Renella. Evelyn makes visits to CHOC weekly for platelet transfusions. Along with her heart conditions, she was also diagnosed with idiopathic thrombocytopenic purpura (ITP), meaning she has low levels of platelets, a part of the blood that prevents bleeding.

Spending so much time in and out of the hospital and shuffling between doctor’s appointments could easily make a child scared of going to the doctor. That’s not the case with Evelyn.

“Everyone we’ve encountered at CHOC has been very kind to us. All CHOC staff is very patient with her and takes a lot of time with her,” says Evelyn’s mom Rosa. “I’m very thankful because thanks to CHOC, Evelyn is doing well.”

No matter the reason they’re visiting CHOC, Evelyn and Rosa always make a point to stop by the FRC, especially on days that Fran is volunteering.

“It makes me sad that patients are here long enough or often enough to get to know their names,” Fran says. “But I’m happy we get to offer them a distraction and sense of normalcy.”

Even though Evelyn doesn’t love reading, she loves being read to―especially by Fran. In addition to arriving early enough for appointments to make Fran’s Story Time, Evelyn loves playing blocks with her friend Fran as well.

“She feels right at home here in the FRC,” says Rosa. “Fran is very sweet to Evelyn and I appreciate everything she does for my daughter.

The admiration goes both ways.

“Evelyn is always so upbeat. Her energy is infectious. I sometimes feel that I get more out of volunteering than I give,” Fran says.

Being a bright spot in a patient’s day is what keeps Fran so connected to her role as a volunteer.

“If you can make a little one smile, then you’re doing something good.”

Learn more about becoming a CHOC volunteer.

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Meet Dr. Nita Doshi

CHOC Children’s wants its patients and families to get to know its specialists— today, meet Dr. Nita Doshi, a pediatric cardiologist with expertise in fetal cardiology.

nita-doshi-fetal-cardiology
Dr. Nita Doshi, a pediatric cardiologist at CHOC Children’s with expertise in fetal cardiology.

Q: What is your education and training?

A: I attended medical school at University of California, Irvine. I completed my pediatric residency internship, categorical pediatric residency, and pediatric cardiology fellowship at University of California at Los Angeles Mattel Children’s Hospital School of Medicine.

Q: What are your special clinical interests?

A: Fetal cardiology, non-invasive cardiology including infant and pediatric transthoracic echocardiography, transesophageal echocardiography, pediatric pulmonary hypertension, and pediatric heart failure.

Q: How long have you been on staff at CHOC?

A: Eight years.

Q: What are some new programs or developments within your specialty?

A: My team provides state-of-the-art ultrasound technology and comprehensive fetal cardiac imaging protocol for evaluation and diagnosis of fetal cardiac disease. We offer the only comprehensive fetal cardiology services in Orange County, including performing fetal echocardiograms on pregnant women. When necessary, we partner with families on prenatal palliative care planning for specialized cases. We also support continuity of care of prenatal patients with their primary obstetrical and perinatology teams when appropriate.

Q: What are your most common diagnoses?

A: Atrial septal defect, ventricular septal defect, atrioventricular canal defect, bicuspid aortic valve and aortic valve stenosis, coarctation of the aorta, pulmonary valve stenosis, tetralogy of Fallot, transposition of the great arteries, double outlet right ventricle, truncus arteriosus, pulmonary hypertension, and cardiomyopathy.

Q: What would you most like community/referring providers to know about you or your division at CHOC?

A:  I treat every patient and family as though they are my very own.  This connection is what has allowed to us create such an amazing network of heart families.  I am proud to serve as a member of a supremely talented and highly subspecialized team of cardiologists.

Q:  What inspires you most about the care being delivered here at CHOC?

A:  CHOC offers the ability for physicians such as me to serve a widely diverse patient population inside and outside of the county.  There is a unique and exceptional opportunity for one-on-one personalized care here at CHOC that doesn’t exist in other centers.  In this role, I am honored to learn from my patients and families every day, including aspects of their backgrounds, cultures, spectrum of disease, and their perspectives.  These are lessons that make me a stronger person and professional to support families in the future.

Q: Why did you decide to become a doctor?

A:  My parents are exceptional role models.  They remind me to this day that when I was eight years old, I informed them I wanted to take care of babies and their hearts.  They are still not quite sure from where the specific inspiration stemmed (perhaps because they are also in the health profession), but they said that I was determined to follow through on this goal, and I did.

Q: What are your hobbies/interests outside of work?

A:  My two year old daughter and my husband are my life.  We play, cook, travel, and explore every aspect of the outside world together.  We pride ourselves on learning every trade possible that enhances our lives.  We have remodeled our entire home with our own bare hands, cook our meals from scratch, and thoroughly enjoy every aspect of creative design (event planning and decorating and all things arts and crafts).

Q: What have you learned from your patients, or what is the funniest thing a patient has ever told you?

A:  One of the funniest moments was when my 4 year old patient being wheeled into the operating room to undergo a heart transplant asked me if they could put “mac n’ cheese” in her IV.

Learn more about fetal cardiology services at CHOC Children's

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CHOC Children’s Heart Institute Helps Teen Runner Overcome Hurdles

Born with transposition of the great arteries (TGA), now 17-year-old Ryan Smith was rushed to CHOC Children’s Hospital, where he underwent an emergency procedure to regulate the flow of oxygen through his body until open-heart surgery could be performed a week later, and he spent two months at CHOC. TGA is a condition in which the large vessels that carry blood from the heart to the lungs, and to the body, are improperly connected.

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Ryan’s condition was severe, and his parents were advised that surgery would be complicated and long — roughly seven hours. During the operation, Dr. Richard Gates, cardiothoracic surgeon and co-medical director of CHOC Children’s Heart Institute, disconnected Ryan’s aorta and pulmonary artery before switching them back to their normal positions. The aorta was stitched to the left ventricle, and the pulmonary artery to the right ventricle. The coronary arteries were freed and connected back to the aorta. Ryan’s chest was left open for a few days while he healed.

Throughout his recovery, Ryan’s family remained by his side. They watched as he continued to fight, including learning how to breathe on his own and eat with the help of numerous CHOC specialists. The Smiths were overjoyed when they were finally able to take their newborn home.

Ryan remained under the care of the CHOC Children’s Heart Institute. He and his parents consider his CHOC team part of their extended family.

His mom Cathy says, “The care Ryan has received by the team at CHOC has been extraordinary. They have taken every step to make sure he’s been given the best care clinically, as well as making him feel a part of a great organizational family.”

Children born with TGA require periodic visits with their cardiologists, who check for heart-related problems, including fast, slow or irregular heart rhythms, leaky heart valves, narrowing of one or both of the great arteries at the switch connection site(s) and narrowing of the coronary arteries at their switch connection site.

Shortly after his first birthday, Ryan had his second open-heart surgery; this time to extend and strengthen his pulmonary artery. Additionally, he has undergone a few interventional procedures in CHOC’s cardiac catheterization lab. Most recently, he became part of a small number of patients – second at CHOC – to receive the world’s smallest pacemaker, the Micra® Transcatheter Pacing System (TPS), to help treat his irregular heart rhythm.

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About the size of a vitamin, the Micra TPS provides the most advanced pacing technology at one-tenth the size of a traditional pacemaker. And, unlike traditional pacemakers, it does not require cardiac leads or a surgical “pocket” under the skin to deliver the pacing therapy. The device is small enough to be delivered through a catheter and implanted directly into the heart. This offers patients a safe alternative to conventional pacemakers without the complications associated with leads – all while being cosmetically invisible.

For Ryan, a high school athlete, and his parents, the Micra TPS gave them all peace of mind and comfort in knowing Ryan is receiving the necessary therapy while still pursuing his passion:  running. He competes on his school’s cross country and track teams. When he’s not running, he enjoys watching races.

In addition to sports, Ryan excels academically and enjoys an active social life. His classmates consider him a leader and positive role model.

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“The thing that makes me most proud of my son is that he lives his life like any other teenager. Nothing is holding him back. He is a testament that no matter what hurdles life may put in front of you, anyone can achieve anything they put their mind and heart into,” shares Ryan’s dad Jim.

Ryan encourages other CHOC patients to pursue their dreams. “You should live your life how you want, as long as you stay within the parameters of your condition,” he explains. “And trust the people at CHOC because they know what they’re doing.”

After high school, Ryan plans on attending college, and, of course, continuing to run.

Learn more about the Heart Institute at CHOC Children's

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Catching a Heart Defect in Utero: Marco’s Story

Meagan and Dante Cipulli quickly settled on a name when they discovered their third baby would be a boy: Marco, which means God of War.

That name would become especially fitting a few weeks later. When Meagan was about six months pregnant, the couple learned their baby had a congenital heart defect called Tetralogy of Fallot and would need open-heart surgery soon after birth.

“Knowing my unborn baby would need open-heart surgery after birth was the scariest experience of my life,” Meagan says. “After receiving his diagnosis, we realized we couldn’t have picked a better name for our little heart warrior.”

Finding heart defects before birth

When a second ultrasound by a perinatologist confirmed that baby Marco’s aorta was enlarged, Meagan was referred to CHOC Children’s pediatric cardiologist Dr. Nita Doshi.

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Dr. Doshi performed a fetal echocardiogram, which uses sound waves to create a picture of an unborn baby’s heart.

The evaluation confirmed that Marco had Tetralogy of Fallot, a heart condition comprised of four related defects that cause inadequate amounts of blood to reach the lungs for oxygen, then sending oxygen-deficient blood throughout the body.

“I was in complete shock,” Meagan says. “As a nurse, I knew exactly what Tetralogy of Fallot was and that he would need open-heart surgery.”

Planning began immediately. With the help of Dr. Doshi, the Cipullis began researching hospitals, cardiologists and surgeons who could care for Marco when the time came.

CHOC emerged as the clear choice, and the Cipullis opted for Dr. Doshi to continue as Marco’s cardiologist and Dr. Richard Gates, director of cardiothoracic surgery as well as CHOC’s surgeon-in-chief, to perform the corrective surgery.

Organizing pre-, post-birth care

Meagan moved her obstetric care to a physician aligned with St. Joseph Hospital so that when Marco was born, he could be immediately transferred next door to CHOC’s neonatal intensive care unit (NICU).

During a perinatal conference, the Cipullis met with the obstetrical team at St. Joseph and CHOC’s neonatal team to discuss Marco’s birth and care.

“That conference allowed me to have all my questions answered. It gave me peace of mind that all those related to our care were on the same page,” Meagan said. “I knew that I had made the right choice after meeting with the care team.”

The remaining weeks of Meagan’s pregnancy were an emotional roller coaster. The couple prepared their older sons as best they could for what was to come with their younger brother.

Not understanding the full extent of their baby’s medical needs, the Cipullis’ were terrified. However, they felt at ease knowing a plan was in place.

“Each day of my pregnancy after diagnosis was filled with worry and fear. But they were also filled with gratitude and hope knowing we were fortunate enough to have Marco’s diagnosis in utero and were able to plan for his care after birth,” Meagan says.

The Cipullis didn’t have to wait long for Marco. On May 16, 2017, Marco was born five weeks ahead of schedule. After a brief rest on his mother’s chest, Marco was moved to CHOC’s NICU, where he stayed for the next five days before going home.

Surgery day

Marco was back at CHOC about three months later for surgery with Dr. Gates to repair his heart defects.

marco-at-choc-after-surgery-for-heart-defect

“At first it all seemed so surreal and somehow I was able to keep it all together until the moment they wheeled Marco into the operating room,” Meagan says. “While he was lying in the crib, he looked over his shoulder and gave me and his dad this smile and look like, ‘I got this, guys, don’t worry.’ I don’t think I have ever cried harder in my life.”

The surgery went well, and Marco spent five days recovering in CHOC’s cardiovascular intensive care unit.

Today, Marco is a happy and healthy 9-month-old who loves to smile and laugh. He sees Dr. Doshi every four months for follow-up appointments, but otherwise requires no additional medication or therapy.

choc-childrens-patient-with-heart-defect-and-family

Many babies with Tetralogy of Fallot will require additional surgeries as they age. The Cipullis however are hopeful that Marco’s early interventional measures will last for many years.

Feeling positive

Meantime, the Cipullis are enjoying every minute with their three boys. They are grateful for the care they received at CHOC after catching Marco’s condition early.

choc-childrens=patient-with-heart-defect-and-brothers

Meagan recommends that other families who find themselves in similar situations be vocal about their fears, but also stay positive about their baby’s future.

“My husband and I each night would talk about what we were feeling that day,” she recalls. “At first, it was more about our fears and worries, but eventually each day we would talk more about our excitement and joy to meet our little warrior.”

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Innovation Comes Home

Five-year-old Emma has hypoplastic left heart syndrome (HLHS) and has undergone three open-heart surgeries since first coming to CHOC Children’s― the only Orange County hospital providing pediatric open-heart surgery― at just 2 days old. After the last surgery, she went home with an advanced, wireless monitoring device provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP). This lightweight tablet monitors Emma’s blood pressure and other vital signs, instantly transmitting the data to her care team at CHOC who can incorporate it into her electronic medical record as needed. The tablet also offers her parents extra peace of mind and direct access to Emma’s team of specialists at CHOC.

Emma and her family have participated in CHOC Walk in the Park to give back to the hospital that has cared for her since birth.

Videoconferencing for “virtual visits” mean CHOC doctors, nurses and other members of her care team are always close by. It’s part of a larger pilot program that integrates several emerging health technologies to provide even more highly personalized care.

HLHS is a type of heart defect that occurs when the left side of the heart does not form properly during pregnancy. In patients with hypoplastic left heart syndrome, most of the structures on the left side of the heart are small and underdeveloped. The degree of underdevelopment differs from child to child. Perhaps the most critical defect in HLHS is the small, underdeveloped left ventricle. This chamber is normally very strong and muscular so it can pump blood to the body. When the chamber is small and poorly developed, it will not function effectively and can’t provide enough blood flow to meet the body’s needs. For this reason, an infant with HLHS will not live long without surgical intervention.

Mid-way through taking a walk in the CVICU, Emma takes a break to dance with surprise visitor Mickey Mouse.

Babies born with this condition must begin the first of three open-heart surgical procedures within days of birth. Emma underwent her first surgery when she was 6 days old and had her third surgery almost four years later. After each surgery, her parents Patrice and Kevin saw noticeable improvement in her energy, mobility and quality of life.

During one stay in CHOC’s cardiovascular intensive care unit (CVICU), Emma and her family dressed up as superheroes and paraded throughout the unit.

But children like Emma need frequent office visits to monitor heart function, medication and symptoms. Over the past five years, her parents have made countless trips to CHOC, sometimes as often as every day. At home, they’ve meticulously tracked their daughter’s medications, blood pressure and overall health with pen and paper.

That changed last year thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure. Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit. With the Integrated Medical Tablet provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP), Emma’s doctors, nurses and care team are only a touch screen away.

home monitoring for choc childrens patient
Thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure, Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit.

“After her last open-heart surgery, Emma was still healing at home when we began testing out this machine,” Patrice said. “It gave us such peace of mind as we were still closely looking at her oxygen saturation and blood pressure. We didn’t have to go into the office every day to get this information—it could be recorded and sent to her specialists from the comfort of our own home.”

Instant Communication 

Surgery may be behind her, but Emma continues taking medications that require constant monitoring and adjustment. The tablet has built-in alerts to notify her doctor if the results are outside the range of the personal limits that have been set for her.

And if something doesn’t look quite right, Patrice and Kevin don’t have to drive Emma over to CHOC. They can take photos and videos with the tablet and send them directly to Emma’s care team.

Although Emma and her family love visiting with her care team, they are happy this at-home monitoring has resulted in less frequent trips to CHOC.

“Emma is on a diuretic for her heart condition, so being able to show her doctors if she is swollen or puffy is helpful,” Patrice said. “We are also able to type up our notes and questions for her doctors.”

Videoconferencing capabilities allow “virtual visits,” including wellness checks and parent education, at any time with the CHOC cardiopulmonary team. Beginning in 2018, CHiP will expand services to patients with other types of heart conditions.

“Patients and families feel much more comfortable outside of the clinical setting, but when they’re not in the hospital, they feel very nervous about the health of their child. They have much more peace of mind knowing that their child has quick access to CHOC from home,” explains Dr. Anthony Chang, CHOC’s Chief Intelligence and Innovation Officer, “We’re proud to offer a clinical environment to test and evaluate new technologies such as artificial intelligence and remote monitoring solutions.”

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Dr. Anthony Chang, Emma’s pediatric cardiologist, and CHOC’s chief intelligence and innovation officer

Far More Than a “Fancy Gadget”

Remote monitoring, video conferencing and wireless access to a patient’s electronic medical record are exciting advancements in care for children with heart failure. In this pilot study, however, CHOC is exploring the additional benefits that may come from leveraging these capabilities with other emerging health technology.

One of those technologies is precision medicine, a treatment approach that incorporates the patient’s genetics, environment and lifestyle. Another is pharmacogenomics, which evaluates how genetics may impact a patient’s individual response to a particular medication.

As a pediatric cardiologist within the CHOC Children’s Heart Institute, Dr. Chang is interested in how these technologies, combined with data analytics and artificial intelligence, may further personalize treatment and improve outcomes.

“Our goal is to use all available technologies and provide the most advanced, innovative care that is best suited for the individual patient,” Dr. Chang said. “CHOC is taking a national role among children’s hospitals to develop a model that may ultimately be used by other pediatric specialties for better management of complex patients.”

Learn more about the Heart Institute at CHOC Children's

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