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Cancer, Global Health, Pediatrics, Stanford News

The “little angel” who helps young Latin American children with cancer

The “little angel” who helps young Latin American children with cancer

ZambranoEduardo Zambrano’s spare office in Stanford Hospital displays some of the essentials of his pathology practice: a large microscope which dominates his desktop and a cabinet overflowing with colorful, hand-painted wooden boxes, each one representing a Latin American child with cancer.

Over the last 12 years, Zambrano, MD, has received as many as 1,000 tumor samples from pediatric oncologists in Venezuela and other Latin American countries who treat desperately poor young patients with various forms of cancer. Each sample is carried on a glass side or embedded in wax, then carefully wrapped in tissue paper and lovingly packaged in a wooden box painted by a patient’s mother or local artisan as a gesture of gratitude. The boxes are covered in suns, stars, flowers and other images of life and hope.

“To me, behind each one of these boxes is a child with cancer, and to know we’ve been able to help them is very special to me,” said Zambrano, chief of pathology at Lucile Packard Children’s Hospital Stanford. An expert in pediatric solid tumors, he volunteers his service on behalf of these youngsters.

A professor of pediatrics and of pathology who came to Stanford a year ago, he said he receives one or two of these boxes a week. He examines the samples under the microscopic and then issues a diagnosis, some involving rare cancers. Clinicians ship the samples to him because in these low-resourced countries, they don’t have the means to accurately diagnose the problem.

“Very frequently the diagnosis (from the home country) is either incomplete because they don’t have the resources to perform confirmatory tests or it’s wrong because they don’t have expertise in pediatric tumors,” he said. “It’s frequent that I have to give them a significantly different diagnosis than what they sent.”

Among the most common tumors he sees are pediatric sarcomas, which can originate in various parts of the body; neuroblastomas; lymphomas; and brain tumors.

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Pediatrics, Sports, Stanford News

A Super Bowl surprise at Packard Children’s

A Super Bowl surprise at Packard Children’s

Just in time for the Super Bowl: A sweet story out of Lucile Packard Children’s Hospital about a special visit for 18-year old patient/football fan Alex Walter. As writer Samantha Dorman describes on the hospital’s Healthier, Happier Lives Blog:

Last week, as Super Bowl 50 excitement grew, we learned that Alex’s dream was to meet his beloved Denver Broncos, who would be practicing just down the street at Stanford University. On Monday, we posted this to our Facebook page. The goal was to catch the Broncos’ eye. Thousands of fans liked and shared the post, tagging Peyton Manning, the Broncos, local reporters, and anyone else to help spread the word.

By the next morning we made contact with Vernon Davis, former 49er and now Super Bowl-contending Broncos tight-end. The photo also caught the attention of Bay Area news outlets, including KTVU’s (Fox 2) Rob Roth and NBC Bay Area, who called the hospital wanting to talk to Alex. Staff and the hospital school devised a plan to surprise Alex, telling him that two TV stations were going to interview him about wanting to meet a Bronco. And during the interview Vernon Davis would walk in and give Alex the surprise of a lifetime!

It all worked according to plan. Check out our behind-the-scenes video of the surprise.

As outlined in the post, Walters received a heart transplant at Packard Children’s when he was 11 and is now being treated for rhabdomyosarcoma, a soft tissue cancer. The treatments leave him with little energy, but he is, according to his mom, “relentlessly positive.”

Cardiovascular Medicine, Patient Care, Pediatrics, Pregnancy, Stanford News

World-first treatment for rare heart defect saves baby born at Packard Children’s

World-first treatment for rare heart defect saves baby born at Packard Children's

Group shot Liam and doctorsLinda Luna was five months pregnant with her first child when she got the bad news: Ultrasound scans showed a deadly defect in her baby boy’s heart. He had a 90 percent chance of dying before or just after birth. But thanks to a groundbreaking treatment at Lucile Packard Children’s Hospital Stanford, two-month-old baby Liam, who just went home to San Jose last week, is beating those odds.

He is the first baby in the world successfully treated with prenatal maternal hyper-oxygenation for his rare heart defect: congenital Ebstein’s anomaly. This week, several local news outlets report on the success of Liam’s case.

The problem at diagnosis? Due to severe leaks in two heart valves, blood flowed backward through the right half of Liam’s heart. His heart became dangerously enlarged. Too little blood reached his lungs and the rest of his body. Left untreated, the defect would cause irreparable heart and lung damage.

“Once you see type of leakage Liam had, it’s usually a progressive process,” said Theresa Tacy, MD, the fetal cardiology specialist who treated Liam in concert with his mom’s high-risk obstetrician, Katherine Bianco, MD, and a team of other specialists from across the hospital. “It just gets worse,” Tacy said. “The fetus eventually develops heart failure and dies.”

The team gave expectant mom Luna 12 hours per day of oxygen therapy for the last three weeks of her pregnancy. The idea was to relax Liam’s lung blood vessels with the extra oxygen he’d get from his mom. This would make it easier for his heart to pump blood forward into his lungs and, the doctors hoped, let him survive until birth and surgery.

Ebsteins vs normal by Tacy“We were trying to offer Liam’s parents hope but also remain realistic that their baby had a very high chance of not making it,” said cardiologist David Axelrod, MD, who cared for Liam in the cardiovascular intensive care unit after he was born. “We knew that even if he made it through pregnancy, his risk of dying during his first few days of life was very high.”

Immediately after his Nov. 22 birth, the doctors put Liam on an ECMO machine that delivered oxygen to his blood. Cardiothoracic surgeon Frank Hanley, MD, also closed a blood vessel near the heart to help Liam’s blood to flow forward. Finally, 11 days later, Liam was strong enough for a Dec. 3 surgery in which Hanley fully repaired his heart.

“It was a huge operation for a tiny baby fighting for his life,” Luna said. “The seven-hour wait during surgery was the longest wait of my life, but when they finally wheeled him out, he was a different baby. We were so thankful.”

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Genetics, Pediatrics, Precision health, Research

New cystic fibrosis screening test developed at Stanford

New cystic fibrosis screening test developed at Stanford

LungsStanford researchers have invented a new technique to detect cystic fibrosis in infants. The test, described in a paper published today in The Journal of Molecular Diagnostics, is more comprehensive, faster and cheaper than current newborn screening methods.

CF, which causes buildup of sticky mucus in the lungs and digestive organs, is the country’s most common fatal genetic disease. Newborn screening for the disease has been conducted in every U.S. state since 2010 and has mostly been a success story: Early diagnosis helps doctors start CF therapy more quickly, which can keep patients healthier longer. With good medical care, such as that provided by the CF experts at Lucile Packard Children’s Hospital Stanford, many people with CF now live into their 40s or beyond.

“Kids who are diagnosed early [with genetic screening tests] do not have a symptom-based diagnosis, so they don’t have to recover from any health insults,” study co-author Iris Schrijver, MD, told me when we discussed the research.

But there are limitations to the current screening tests. One big problem is that they can miss rare mutations in the CF gene, particularly those that prevail in nonwhite populations about whose CF changes scientists have limited knowledge. That’s especially an issue in California, where the 500,000 babies born each year have very diverse heritages. In fact, to help illuminate the problems of older CF tests, Schrijver recently published another study about the difficulty nonwhite CF patients face in receiving timely diagnosis.

In contrast to the current screening tests, the new test will detect virtually all CF-causing mutations in one step, which should make it far easier to find every affected newborn.

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In the News, Pediatrics, Stanford News, Videos

“The need is out there”: A look at the new Teen Van

"The need is out there": A look at the new Teen Van

It’s big, blue and beneficial to hundreds of San Francisco Bay Area teens who don’t have the means or the motivation to visit a traditional doctors’ office.

The Mobile Adolescent Health Services Program operated by Lucile Packard Children’s Hospital Stanford — aka the Teen Van — was featured on this recent Bay Area Proud segment from NBC Bay Area.

Spearheaded by Seth Ammerman, MD, clinical professor of pediatrics, the van provides a host of health services to teens — 40 percent of whom are currently homeless or have been in the past year, Ammerman says.

Although the program has been around since 1996, the van itself is new, offering more space and enhanced technology. And there’s plenty of work to be done.

“The need is out there, unfortunately, for more programs like this,” Ammerman says.

Previously: Adolescent Health Van wins community award for aiming to “help kids turn their lives around” and Packard Children’s Adolescent Health Van celebrates 15 years
Video courtesy of NBC Bay Area

Global Health, Pediatrics, Stanford News

Clean water for Dhaka, one pump at a time

Clean water for Dhaka, one pump at a time

Dhaka water 2

More than two years ago, Amy Pickering, PhD, and her Stanford colleagues were just starting to field-test a radical new approach to clean up the contaminated water supply in Dhaka, Bangladesh, and improve the health of the city’s slum dwellers.

Since then, the team has made major progress in the project, which uses a simple, low-cost chlorination system to eliminate dangerous microbes in the city’s drinking water, Pickering said in a recent talk at the Stanford Global Health Research Convening on campus.

Dhaka has notoriously unsafe water supplies, with testing showing that as much of 80 percent of the city’s water is contaminated with E. coli, a major cause of diarrhea, Pickering said. The source: human waste, which is sucked into the city’s water system by cracked, leaky PVC pipes.

“There’s open sewage everywhere,” Pickering told me for a 2013 story in Stanford Medicine magazine. “There’s not a well-functioning sewer system to remove feces from the communities. The kids are playing in it, and it’s very unsafe.”

Her team, which includes a group of Stanford undergraduates, created a simple device, attached to communal water pumps, which infuses a small amount of chlorine into the water to kill viruses and bacteria and most disease-causing pathogens. It’s the first automated chlorine disinfection system in use in a low-income area.

In 2014, the group tested the device over a 10-month period in more than 150 households and found it reduced E. coli contamination by 70 percent, Pickering told more than 100 faculty, students and staff at the recent conference. The event was sponsored by the Stanford Center for Innovation in Global Health.

The researchers are now midway through a much larger trial, funded by the World Bank, to test the health impacts of the purification system in more than 1100 Bangladeshi children under age 5. The researchers are looking at whether the system reduces the incidence of diarrhea, a common cause of childhood death, and improves weight gain among the children, who often suffer from stunted growth because of waterborne illness, said Pickering, now a research scientist at the Stanford Woods Institute for the Environment.

The researchers also have made progress in finding a way to support and sustain use of the purification system. Pickering said the group offered the pumps to local landlords, who could use them to attract potential renters. Some 60 landlords agreed to pay $3 to $5 a month for the pumps, almost enough to cover the cost of the system, she said.

“This was really encouraging to us,” Pickering said. “We weren’t expecting people to be willing to pay this much.”

She also has found some potential commercial partners, including MSR Global Health, a pioneering outdoor company, interested in helping further reduce costs and refining the technology as a prelude to commercially marketing the pumps, she said.

Pickering said she now hopes to expand the project to sub-Saharan Africa, and spread her dream of bringing clean water and good health to low-income residents across the globe.

Previously: Stanford pump project makes clean water no longer a pipe dream, The right tool for the job: Creating a waterborne disease reporting system for Nepal and How cutting the walking time to a water source can reduce childhood mortality in sub-Saharan Africa
Photo courtesy of Amy Pickering

Patient Care, Pediatrics, Public Health

Superheroes to the rescue: A creative approach to educating kids about asthma

Superheroes to the rescue: A creative approach to educating kids about asthma

Asthma affects more than 6 million children and leads to approximately 1.8 million visits to the emergency room annually in the United States, according to the Centers for Disease Control and Prevention.

In order to effectively manage asthma and help eliminate trips to the emergency room, physicians must identify the correct daily control and emergency rescue medications for their patients. However, educating young patients and their families is also critical.

“Patient education needs to be done at every visit,” Richard Moss, MD, professor of pediatrics, emeritus at Lucile Packard Children’s Hospital Stanford, recently told me. “This includes a review of the asthma symptoms, proper use of medications, written action plan, test results and educational handouts. The key is continuity of care and reiteration of important information at every visit.”

Last month, NBC News featured the work of an Illinois physician who has taken a non-traditional approach to patient education. Alex Thomas, MD, a cartoonist and pediatric allergist at the Center for Asthma and Allergy, created a multimedia asthma education program called Iggy and the Inhalers, which includes comic books, YouTube videos, posters, trading cards and stickers. I recently spoke with Thomas about this program and Booster Shot Comics, a partnership between Thomas and a health-communication specialist.

What motivated you to create the Iggy and the Inhalers comic book?

I started drawing Iggy characters when I was 11 years old. I grew up with asthma myself, so I drew as a way to understand my medications – turning them into superhero characters. My mom is an allergist, and she had a patient support group for kids with asthma. So I started drawing little comic strips about Iggy in the support group newsletter.

An interest in asthma and asthma education ultimately led me to go to medical school and become a pediatric allergist. When I was working on the pediatric wards, I noticed that a lot of kids were being admitted and readmitted to the hospital for asthma exacerbation due to confusion about their medications. So I eventually revisited my Iggy characters to create educational materials for physicians and patients, with the help of health communication specialist Gary Ashwal.

Can you describe the characters in Iggy and the Inhalers?

Iggy the Inhaler is the main character who teaches kids about the physiology of asthma. He has two teammates. One is Broncho the Bronchodilator, a rescue inhaler for quick relief of symptoms. The other partner is Coltron the Controller, a control inhaler that kids with persistent asthma need to take on a daily basis. There are also asthma trigger villains: Smokey Joe, Moldar, Pollenoid, Dust Mite, Roach and Hairy.

We wanted to create dynamic characters that embodied the mechanism of the medications that they represent, so kids can intuitively understand how the medications actually work. When kids look at a rescue inhaler, they imagine Broncho loosening the muscle bands around the airway because he’s a cowboy with a lasso. Whereas when they look at a control inhaler, they imagine Coltron decreasing inflammation inside the airways using his fire extinguisher arm.

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Global Health, Health Policy, In the News, Pediatrics, Pregnancy, Women's Health

Ending preventable stillbirth: A Q&A with Stanford global-health expert Gary Darmstadt

Ending preventable stillbirth: A Q&A with Stanford global-health expert Gary Darmstadt

Today, prominent medical journal The Lancet publishes “Ending Preventable Stillbirth,” a series of articles calling for global efforts to greatly reduce fetal deaths that occur late in pregnancy or during labor. The series brings much-needed attention to a medical and societal problem that often goes ignored.

“Millions of women and families around the world have suffered the pain of stillbirth in silence,” said series adviser Gary Darmstadt, MD, a Stanford global-health expert who studies how to improve medical care for pregnant women, infants and children in developing countries.

Darmstadt recently answered my questions about why we should break the silence and work to lower stillbirth rates. “Many of the interventions that avert stillbirths also avert deaths of mothers and newborns,” he said. An edited version of his responses is below.

What’s the biggest misconception about stillbirth?

Perhaps the biggest misconception is that stillbirths don’t matter. There is a tradition of social stigma and lack of awareness of stillbirths that makes it easy to keep them out of sight and out of mind. But an estimated 1.2 million women around the world every year have an intrapartum stillbirth: They enter into labor after a normal pregnancy, with great expectations for a healthy baby and one of the most joyous experiences of a lifetime, only to face sudden devastation when the baby dies during birth. Their experiences matter.

A related misconception is that nothing much can be done to prevent stillbirth, or that prevention will divert scarce resources from other important issues. In fact, three fourths of intrapartum stillbirths around the world could be prevented through means that we take for granted in high income societies — such as skilled medical care before and during delivery — and that also benefit mothers, surviving newborns and children.

Why did the scientists involved in The Lancet’s new series think it was important to break the common pattern of silence, stigma and fatalism around stillbirth?

Stillbirth is a taboo topic in many societies, or worse yet, mothers are blamed for failing to deliver a healthy baby and feel intense social pressure to keep quiet about stillbirth. Their sense of loss and isolation may lead to depression, which in turn has many adverse consequences, including for subsequent pregnancies. On the other hand, many women who have the opportunity to talk about their experience with stillbirth and work through their grief express great relief and renewed hope. When the last Lancet stillbirth series came out five years ago, and women shared their experiences online or in parent support groups — often the first time they had ever shared their experience with stillbirth with anyone — many found this to be immensely healing and empowering. Thus, it was both the science showing the adverse effects of unexpressed and unresolved grief, and the testimonials of women who had experienced the benefits of breaking the silence that I believe influenced the scientists involved in The Lancet series to highlight this issue.

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Cardiovascular Medicine, Patient Care, Pediatrics, Stanford News, Transplants

NBC Dateline to explore the “extraordinary situation” facing one Packard Children’s transplant family

NBC Dateline to explore the "extraordinary situation" facing one Packard Children's transplant family

Bingham family - 560

It’s a story that seems a bit hard to believe.

Stacy and Jason Bingham of Haines, Oregon, have five beautiful children — Sierra, Megan, Lindsey, Hunter, and Gage. Unfortunately, as written about on Scope previously, three of the kids have been hit with cardiomyopathy, a life-threatening disease of the heart muscle that reduces the heart’s ability to pump blood effectively. Two other children are being monitored for heart irregularities.

The result? The eldest, 16-year-old Sierra, has received two heart transplants at Lucile Packard Children’s Hospital Stanford, one in 2006 and a replacement in 2015. Lindsey, 12, had a heart transplant in 2013. Gage, 7, was recently placed on a Heartware ventricular assist device in order to support his failing heart. He is now awaiting placement on the transplant list. Meanwhile, cardiologists are keeping an eye on any potential problems that could be faced by Megan, 14, and Hunter, 9.

“This is an incredibly strong and wonderful family, and they’re facing an extraordinary situation,” said David Rosenthal, MD, director of the pediatric heart failure program at Packard Children’s.

This Sunday, January 17, at 9 PM Pacific, Dateline NBC will be presenting their second national broadcast looking at the personal and medical journey the Binghams have faced, along with the many challenges ahead. In addition, the program will reveal some of the advanced therapies for heart failure offered by the Heart Center at Stanford Children’s Health.

The first Dateline NBC program on the Bingham family, which aired in 2013, can be viewed here.

Robert Dicks is senior director of media relations for Lucile Packard Children’s Hospital Stanford.

Previously: Ventricular assist device helps teen graduate from high schoolStem cell medicine for hearts? Yes, please, says one amazing family and Packard Children’s heart transplant family featured tonight on Dateline
Photo by Norbert von der Groeben

Health and Fitness, In the News, Nutrition, Pediatrics

Teens need healthy brain food, says Stanford expert

Teens need healthy brain food, says Stanford expert

teens-healthy-foodToday, U.S. News and World Report released their 2016 ranking of the best diets. For their story on healthy eating for teenagers, Neville Golden, MD, division chief of adolescent medicine at Lucile Packard Children’s Hospital Stanford, explained how diet can affect teens’ brains and moods:

Teens are faced with myriad physical changes and academic demands, all while being bombarded by what their peers are doing – from what not to wear, to what to say and when to say it, to how to get the attention of you know who. And in the midst of all this, the body’s most critical organ – the brain –is still developing, says Dr. Neville Golden, a member of the American Academy of Pediatrics’ Committee on Nutrition…

“If [teens] don’t eat right, they can become irritable, depressed [and] develop problems such as obesity and eating disorders – and those have a whole host of psychological morbidities,” Golden says, adding that proper nutrition can help prevent and manage these conditions.

The rest of the story provides lots of specifics on how teens can improve their diets, including a sample menu for a day of healthy eating. If you know a teen who has made a nutritious New Year’s resolution, it’s definitely worth sharing.

Previously: Want teens to eat healthy? Make sure they get a good night’s sleep, Living near fast food restaurants influences California teens’ eating habits and British teens not getting enough fruits, veggies
Photo by Nestlé

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