Spinal Muscular Atrophy Awareness Month brings attention to deadly genetic disease — and a new treatment bringing hope for families.
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Patient Stories
National Cleft and Craniofacial Month
Mathias was born at Packard Children’s eight years ago, and he spent the first month of his life in the NICU receiving treatment for his multiple congenital anomalies.
“I share the same heart condition as Jimmy Kimmel’s son”
Christy was born with a type of congenital heart disease known as tetralogy of Fallot with pulmonary atresia.
Siblings with double-lung transplants beat the odds
When 9-year-old David Diaz was wheeled into surgery for a double-lung transplant, he had an advantage almost no one in his situation has: his sister had the same rare surgery just three years earlier.
Dozens of casts later, a future without clubfoot
Anna Davis has had more than 50 casts in her under 10 years due to clubfoot. Dr. Gamble, pediatric orthopedic specialist, has helped her through the challenges of treatment for the condition.
Seamless care from Monterey to Palo Alto saves baby with brain cyst
Karina Barger and her husband David Goldman noticed something unusual with their 2-month-old son Bobby. He was consistently looking to the left and couldn’t bring his eyes to look straight ahead.
Baby born with half a heart supported with unusual ventricular assist device
Brayden McQuillan, now 3 months old, had a ventricular assist device implanted on his 18th day of life to help his failing heart pump blood.
Junior high school president saved by school staff after sudden cardiac arrest
Kenyati Thompson Jr. is returning to his life in Bakersfield, California, after recovering from a sudden, nearly fatal cardiac arrest at his school.
The surgery that helped a boy back onto the basketball court
An avid basketball player, Chris loves the Golden State Warriors and can spew out player statistics at any moment. But physiologically, Chris is very unique.
Heart transplant for Gage Bingham
Early Wednesday morning, after 512 days on the transplant wait list, 8-year-old Gage Bingham became the third child in his family to receive a new heart.
Teams on a transplant journey
Christopher Castillo and Lani Lasconia had been acquaintances since childhood, but could never have imagined how their paths would cross in adulthood to help save Lani’s daughter, Cyehnna.
Formerly conjoined twins returning to Sacramento
Formerly conjoined twins Eva and Erika Sandoval are one step closer to going home. The 2½-year-old sisters, who were surgically separated on Dec. 6, moved from Palo Alto to UC Davis Children’s Hospital in Sacramento.
Treating an overlooked heart condition
Marissa Eustaquio’s case was a mystery. After a strong recovery from heart surgery as a child, she’d been active for years, enjoying dancing, hula, gymnastics, running, and bike-riding.
A Family’s Journey
Joey was born with several congenital heart defects, including a large ventricular septal defect (VSD), severe Ebstein’s Anomaly, and a coarctation of his aorta.
Formerly conjoined twins update: Erika and Eva
Formerly conjoined twins Erika and Eva Sandoval, who were separated December 6 are making good progress on learning to live as two people.
Living a full life on a VAD
The youngest of five kids in the Bingham family, 8-year-old Gage is the third of his siblings to suffer from a life-threatening heart failure condition known as dilated cardiomyopathy.
Infant at Stanford first to get drug for deadly neurodegenerative disease
If the only hope for your baby daughter lay in a brand-new experimental drug, would you want doctors to give it to her? What if she would be the first infant in the world to receive it?
The diagnosis behind the diagnosis
In July 2013, 14-year-old Milan Gambhir – who had been a healthy child – was diagnosed with one of the most aggressive and incurable brain tumors: glioblastoma multiforme (GBM).
A New Vision for Palliative Care: Partners for Hope
One mother shares why the palliative care program has become a staple in her whole family’s care plan.
Growing up in a hospital: My 25 years with Lucile Packard Children’s Hospital
When you are a kid and you’re sick, you go to the pediatrician. If you have a chronic medical condition, as in my case, you establish a team of pediatric specialists who can provide for your health issues on a consistent basis throughout your childhood.
When a family vacation abroad turns to tragedy: Finding life-saving care and support far away from home
What was meant to be a trip to Disneyland in late summer 2015 turned to tragedy. Now, more than a year following the horrible car accident that changed their lives forever, the Liu family of Beijing is bringing their little girl home.
Mystery solved: Researchers use genetic tools to diagnose young girl’s rare heart condition
Right after Astrea Li born, she went into cardiac arrest, not just once, but repeatedly. It was all her doctors at Lucile Packard Children’s Hospital Stanford could do just to keep her alive. Soon, a far-flung team of researchers joined together to solve the mystery of what was causing Astrea’s severe heart arrhythmia.
Automating genetic analysis could speed diagnosis of rare diseases
Stanford researchers recently published a scientific study describing how and why they’re trying to automate the diagnosis of rare genetic diseases.
Patient Update: Hana’s busy being a happy toddler with her new heart
We introduced Hana Yago a few months ago when she was awaiting a heart transplant. Today, the Yago family of San Francisco are one step closer home and leaps and bounds closer to their “new normal.”
New technology used at Stanford Children’s Health Ear Clinic brings back hearing for 9-year-old boy
“This is awesome!” Exclaimed nine-year-old Joshua Gomez, as he listened to his favorite song at his appointment at Stanford Children’s Health Ear Clinic in Palo Alto on July 21. “Awesome” because he is now able to hear it more clearly than ever before.
Packard Children’s patient visits Capitol Hill to advocate for kids with complex medical conditions
On the heels of his preschool graduation, 4-year-old Tyler Briend kicked off his summer vacation by traveling to Washington D.C. to speak with lawmakers about improving health care access for kids like him – patients living with complex medical conditions. Tyler, a patient at Lucile Packard Children’s Hospital Stanford, and his parents made the trip as part of Speak Now for Kids Family Advocacy Day, sponsored by the Children’s Hospital Association (CHA).
The mysterious story of a boy who survived a rare and deadly cancer
What would you do if your toddler had a very rare blood cancer and his treatments were failing? At what point would you decide that it was time to stop those treatments and make him as comfortable and happy as possible for whatever time he had left? That was the terrible decision faced by the parents of a young child with a form of leukemia so unusual and deadly that his doctors at Lucile Packard Children’s Hospital Stanford didn’t know if anyone had ever survived it.
Stanford Trauma Center saves 10-year-old’s hand — and his life
When Elijah Olivas’s hand was severed in a car accident, dozens of experts from our pediatric trauma team coordinated to perform 20 hours of life- and limb-saving surgery.
The power of organ donation
April is Donate Life Month, and 14-year-old Sina Sulunga-Kahaialii of Hawaii is living proof that organ donation saves lives. She recently received a kidney transplant at our hospital due to chronic renal failure.
A Super Bowl Surprise at Packard Children’s
Thanks to the power of social media, Denver Broncos star Vernon Davis answers a cancer patient’s wish.
World-first treatment for rare heart defect saves baby born at Packard Children’s
Linda 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.
Stanford Children’s Health orthopedists seeing a rise in ACL injuries among young girls
Young, athletic girls like Aminah Carter, 8, are being treated for sports injuries typically associated with adults and professional athletes.
Dateline NBC profiles Heart Center family at Lucile Packard Children’s Hospital Stanford
Dateline NBC presented their 2nd national broadcast looking at the personal and medical journey the Binghams have faced, along with the many challenges ahead.
What’s wrong with baby Wyatt?
What should have been one of their family’s happiest moments quickly turned somber as they feared the seriousness of Wyatt’s condition. The dermatology team suspected it could be a skin disease, but they couldn’t know for sure. Wyatt needed to be transferred to Lucile Packard Children’s Hospital Stanford.
After radiation-free treatment for their son’s brain cancer, family travels 6100 miles every year to reunite with their care team at Packard Children’s
Recently, the Loh family, originally from the Bay Area, was in town for their annual visit from Shanghai to check in with son Elliot’s care team. They reflected on the experience of traveling across the world to give their son the best treatment possible.
A family’s story changes the science of a rare tumor
When Danah Jewett’s 5-year-old son, Dylan, was dying from a brain tumor in 2008, she wanted to know if there was anything her family could do to help other children who might someday face the same terrible diagnosis. Yes, said Dylan’s doctor, Michelle Monje, MD, PhD: Would you be willing to donate his tumor for cancer research after his death?
Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses
Children and teenagers with all kinds of chronic and serious conditions want normalcy in their lives, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford. Sourkes helps our patients and their families navigate the divide between living with a difficult diagnosis and simply being a kid. Here, she offers advice on how to help children who must “commute” back and forth between the medical world and their everyday lives.
Where are they now? Quadruplets edition
The Wang family is truly one in a million.
The worst disease you’ve never heard of: Stanford researchers and patients battle EB
Stanford recently launched the world’s first stem-cell based trial aimed at a devastating skin disease called epidermoloysis bullosa. Physicians from our dermatology team are trying to correct a faulty gene in the skin cells of patients with a severe form of the condition, which causes large, painful wounds and currently has no cure.
Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges
When Juniper French was born in April 2011, her mom had been pregnant for 23 weeks and 6 days – a little more than half of a typical 40-week pregnancy. Shortly before her birth, doctors had to try to explain the possible consequences of her very early arrival to her parents.
Kids with dangerous heart arrhythmias receive lifesaving support from high-tech, implantable devices at Stanford Children’s Health
Our implantable cardioverter defibrillator team provides lifesaving support for young people like Reina Villarreal, who suffers from an abnormal heart rhythm.
Santa Clara woman with cystic fibrosis thanks CF Center at Stanford Children’s Health for successful journey to adult care
Lauren Catron, 26, credits the specialists at the Pulmonary and Cystic Fibrosis Center at Lucile Packard Children’s Hospital Stanford for keeping her alive.
Teen’s rare congenital heart defect fixed at Stanford Children’s Health
A Salinas teen faced a heart defect that could lead to sudden death, so our Heart Center leads the way in fixing a defect more common that most doctors realize.
Illinois boy saved by super-surgeon
Jordan Ervin, 6, had 26 areas of blood flow blockage from his heart to his lungs. Surgeon Frank Hanley repaired all of the blockages in one marathon surgery.
Cochlear implants give young boy with Down syndrome a new lease on life at Lucile Packard Children’s Hospital Stanford
Doctors at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health have proven that cochlear implants in deaf children with developmental delay can help them from falling further behind their peers.
A Heartfelt Valentine’s Party for CHD Awareness Week
On Sunday, February 8, dozens of patient families with children that have congenital heart disease gathered to celebrate lives saved and CHD Awareness Week (2/7/15 – 2/14/15).
Teen traveled 3000 miles, from CT to Stanford, for life-changing neck surgery
Less than one month after reading about “stealth surgery” online, Jennifer traveled cross-country for an innovative surgery that helped her turn the corner from a painful past toward a brighter future.
With mass in chest removed, looks like newborn Angel Gomez is going to be just fine
East Bay mom says she was told to consider terminating high-risk pregnancy, so she sought a 2nd opinion at Lucile Packard Children’s Hospital, where the baby was saved.
Teen in Shasta Lake already got her present, the gift of life
ABC 7’s Lilian Kim reports on heart transplant recipient Lizzie Johnson, 14, and her family, about receiving the ultimate gift for Christmas this year, a new heart and a second chance at life.
Interventional Radiology program at Lucile Packard Children’s Hospital Stanford leads the way with a child-friendly approach
Thanks to a new Pediatric Interventional Radiology program at Stanford Children’s Health, the first of its kind in the Bay Area, kids can often forgo anesthesia and, in some cases, surgery for many of their treatments.
At one-year anniversary, Reno family recalls lifesaving neurosurgery for daughter at Lucile Packard Children’s Hospital Stanford
Dr. Gerald Grant and his neurosurgery team quickly and successfully treated Emily Zimmerman’s fast-growing brain tumor. “To have this level of care for our daughter is our greatest relief,” said mom.
Heart transplant recipient celebrates historic 30-year anniversary
Lizzy Craze, 32, is the only heart transplant recipient in America, and likely the world, to survive 30 years with the same donor heart she received as a toddler.
From Post-WWII Russia to 7-year-old Giana Brown, a bone-repair method evolves
An incredible device originally developed in post-WWII Siberia helped 7-year-old Giana Brown straighten and lengthen her left leg by making small adjustments for more than six months.
Unusual leg surgery at Lucile Packard Children’s Hospital Stanford doesn’t hold wrestling champ back
A San Jose teen and wrestling champ has regained full function after a complex surgery on his leg and back.
Parents from the United Kingdom travelled over 5,000 miles to save daughter Isla’s heart
When parents of baby Isla found out at 16 weeks of pregnancy that their baby had a heart defect, atrioventricular septal defect, or AVSD, they traveled from the UK to the US to get help from pediatric surgeon Dr. Frank Hanley and cardiologist Dr. Stafford Grady.
Lifesaving kidney transplants at Lucile Packard Children’s Hospital Stanford give Hawaii siblings the chance to get growing
Siblings Dominic and Julia Faisca had a rare kidney disease that stunted their growth. Thanks to our top-ranked transplant teams, the kids are now back home in Hawaii and “growing like weeds,” according to their doctor.
Two Generations Turn to Lucile Packard Children’s Hospital Stanford for Cleft Lip and Palate Care
The moment Vanessa Garcia of Hollister, Calif., was born in 1985, doctors knew that the two gaps in her top lip and the division of her upper gums would make it impossible for her to eat.
Rare heart-lung transplant allows 12-year-old girl to have a second chance at life
A Minnesota doctor diagnosed Katie Grace, now 12, with idiopathic pulmonary arterial hypertension “IPAH,” at only 5 years old, and didn’t expect her to live. But the spunky lover of swimming beat the odds of that diagnosis, and received a rare heart-lung transplant in June.
‘Lipstick Girl’ Gets Big Birthday Wish: A Life-Saving Double Lung Transplant
Doris Diaz battled with severe cystic fibrosis. After her double lung transplant, Doris is able to take deep breaths for the first time in her life.
Teen is now able to eat, sleep and gain weight again
A gastroenterologist diagnosed teen with a swallowing disorder in which tight muscle fibers in the lower esophagus prevent food and liquids from passing
Orthopaedic and Rehabilitation Services teams help Hadi walk for the first time
Back home at the Tulkarem refugee camp in the West Bank, Palestine, 6-year-old Hadi Alkhadra has had to crawl or be carried by his parents his entire life.
A chance discovery, and a decision to wait
In 2005 13-year-old Monica Datta joined several other young people in undergoing MRIs as part of a research study at Stanford University. Unlike everyone else, Datta’s unexpectedly revealed a spot in her brain that nobody had known about.
Fetal intervention saves baby Elijah
Elizabeth Rodriguez-Garcia was nearly six months pregnant when she arrived at a routine ultrasound in July 2013. It would be the first baby, a boy, for Elizabeth and her husband Salvador Alvarez.
Back to karate after beating liver transplant odds
A liver tumor for 5-year-old Finn might have required a transplant, but our doctors had a better plan.
Two Shelbys share soccer, sisters, type 1 diabetes and inspiration
Shelby Scott, age 10, has a lot in common with Stanford senior forward, Shelby Payne. Together, their examples give kids with type 1 diabetes hope for a very bright future.
Sports Concussions Vary for Boys and Girls
Specialists from our Brain, Behavior and Neurosciences Center discuss the signs, symptoms and safest care for concussions—and why girls’ rates are rising.
Putting Pain in the Past
13-year-old Jaden is finally migraine-free, thanks to collaboration between Packard Children’s and California Pacific Medical Center.
Leukemia Behind Her, Golf Championships Ahead
After years of treatment for acute lymphocytic leukemia, 12-year-old Grace Chen is disease-free and making her mark through her game.
Rare triplets make their debut!
The Finlen family of Salinas is feeling pretty lucky today. Their newborn triplets, born at… Read more »
Dateline NBC Profiles Family’s Heart Journey
This Wednesday, June 5, at 8 pm, Dateline NBC will present the fascinating story of the Bingham family’s medical journey at Packard Children’s. It should be one of Dateline’s most talked-about programs of the year.
Mother’s Gift: A Life-Saving Kidney For Her Daughter
To care for her daughter, Lori Vargas first had to care for herself: a diet and fitness regimen helped her qualify to be a living organ donor. She lost close to 40 pounds – and saved her daughter’s life.
From Nurturing Care, A Nurse is Born
In the history of Lucile Packard Children’s Hospital, Misty Blue Foster is remembered as a… Read more »
"Kicking for Miracles" Raises Over $10K!
The first-ever “Kicking for Miracles” event, hosted by World Class Tae Kwon Do in San… Read more »
From the Heart
Karina Gomez’s daughter, Kassaundra, was born in 2002 with a rare and life-threatening cardiac abnormality. At just 2 days old, Packard heart surgeons attached a tiny pacemaker to one of the two lower chambers, or ventricles, of her heart. Five months later, it was replaced it with a more advanced device wired to both ventricles.
My Packard Story: Keira and David
A kidney tumor sent Brandon to Packard Children’s when he was just 17 months old and a recurrence brought him back when he was 2. Today Brandon is a happy, healthy 11-year-old with no signs of cancer.
Something to Smile About
A year ago, Jon and Kristi Cannon feared their young son would never smile again…. Read more »
Prom Night Lets Kids Forget They’re Patients
In jackets and ties, party dresses and heels, more than 125 young patients and their… Read more »
Balancing Care with Busy Boyhood
It’s been more than seven years since Cole Rossi was cured of a rare brain cancer. The tumor and therapy left him with low levels of growth hormone, double vision, and physical weakness. He remains on hormone treatment and gets MRIs twice a year. He sees an oncologist every six months and a neurologist every other year.
Noah’s Tiny Voice Speaks Volumes
Noah Jackson was born without a voice. Because of a rare genetic disease, his airway… Read more »
My Packard Story: Maggie
Born with a congenital heart malformation, Maggie’s daughter, Grace, found her place in the hearts of the physicians, surgeons, nurses, and staff who helped her grow into a normal healthy childhood.
Rooting for Luke
Ongoing chemotherapy means that 8-year-old Luke O’Moore of Los Gatos cannot take part in his beloved BMX races. So members of the northern California BMX community came together to organize an exciting pro-am racing series and fundraiser in his honor.
A Rocky Start
Katie Jo Shuman pitches for her school’s softball team, and loves basketball and soccer. She also has an artistic, entrepreneurial streak: One of her hobbies is designing and selling jewelry for good causes.
Appetite for Life
Caitlin Burns was born with an immune deficiency and pseudo-obstruction of the gastrointestinal tract, a life-threatening condition that prevents the normal movement of food through her intestines. Packard specialists have been caring for her since she was an infant.
Less is More
With her graduation just around the corner, a new job, and plans for college in the fall, Megan Acaccia has a lot to celebrate.
But just a year ago, things did not look so bright for the 18-year-old San Jose native. At 5 feet 3 inches tall and weighing more than 300 pounds, Megan was morbidly obese. She was so bullied at school that she stayed at home for a month, and she suffered through bouts of vomiting, diarrhea, and night sweats. Requiring seven kinds of daily medications, she battled hypertension, arthritis, acid reflux, polycystic ovary syndrome, and obstructive sleep apnea—all a result of her excess weight.
Three Days, Three Hearts
In an extremely rare three-day series of transplants in May, three young adults received new hearts at the Children’s Heart Center at Packard Children’s, including an extraordinarily uncommon double-organ heart and liver transplant.
Bonded Forever Through the Miracle of Transplant
“There’s nothing like having a bond with someone else who knows exactly what you’re going through.”
Two Separate Little Girls
Angelina and Angelica Sabuco are running around, making new friends, and looking forward to their 3rd birthday party in August—their first as two separate little girls. “That is a great birthday gift!” said their mother Ginady Sabuco. “They love to run around, go out, and play with other children now.” It’s hard to believe that a short while ago, these same two girls were struggling to even walk and faced an uncertain future.
