CHOC Becomes SCID Referral Center

CHOC Children’s is pleased to have recently become a referral center for severe combined immune deficiency (SCID), filling a regional gap that once required Orange County infants to go outside the county for care.

Led by Drs. David Buchbinder, Wan-yin Chan, Diane Nugent and Jasjit Singh, the immunodeficiency program is a multidisciplinary effort crossing multiple specialties at CHOC including allergy and immunology, hematology and infectious disease

Though they appear healthy at birth, infants with this primary immunodeficiency disease lack T lymphocytes, one of the white blood cells that help fight infections. 

Babies with SCID cannot fight even the most innocuous infections and often die. The condition is considered by the medical community as a pediatric emergency.

“Prior to development of SCID newborn screening, the diagnosis would be delayed,” Dr. Chan says. “Often times these patients would not get sick until after 6 months of age. No one would know they were affected until the antibodies from their mother would wane. They end up with life threatening infections with serious complications often resulting in death.”

However, studies show that early bone marrow or stem cell transplants can improve outcomes significantly, Dr. Chan says.

Survival rates increase to 94 percent if administered to an affected infant by age 3 ½ months. However, if transplants occur after that age, survival rates increase to only 70 percent, underscoring the importance of early detection and intervention. 

To that end, California became one of the first states to add SCID to its list of recommended newborn screenings in 2010. In the years since, all states have followed suit. 

Under CHOC’s program, immunodeficiency team physicians review each case of Orange County babies who test positive in newborn screenings for SCID and ask parents to immediately seek a confirmatory blood test for the infant, Dr. Chan says.

If the additional tests confirm the diagnosis, patients are urgently admitted to CHOC for workup and treatment, Dr. Chan says.

Since CHOC’s center was formed in August, more than 20 patients have been flagged in the surrounding communities and each individual case has been reviewed by the immunodeficiency team in collaboration with local pediatricians.

Those urgent blood tests confirmed the presence of SCID or a SCID-like disorder in more than 25 percent of cases thus far. 

CHOC Children’s Doctors’ Day 2019 Celebration – April 5

CHOC Children’s physicians are invited to a special Doctors’ Day luncheon to celebrate their commitment and dedication to patients and families.

Festivities will be held from 11:30 a.m. to 2 p.m. April 5 in the physician dining room and adjacent outdoor patio on the second floor of the Bill Holmes Tower.

A recognition ceremony begins at 12:30 p.m., and a professional photographer will be available to take professional headshots from 11 a.m. to 2 p.m.

Please RSVP by March 25 at choc.org/doctorsday or call the CHOC business development team at 714-509-4291.

CHOC Children’s Photograph Selected for National Photo Exhibit Showcasing the Work of Children’s Hospitals

A photograph depicting a young patient in CHOC Children’s neonatal intensive care unit (NICU) participating in a music therapy session has earned a spot in a national photo exhibit showcasing how children’s hospitals help kids thrive.

The biennial Children’s Hospitals Photo Exhibit, the result of a national competition administered by the Children’s Hospital Association (CHA), curates 50 photographs selected by a panel of distinguished judges including renowned photographer and author Anne Geddes.

CHOC’s winning photo in the Children’s Hospitals Photo Exhibit administered by the Children’s Hospital Association (CHA)

In CHOC’s winning photo illustrates the power of music therapy, which helped the patient, Olivia, manage pain, self-soothe and express herself. Olivia, who spent the first seven months of her life in the NICU, became more relaxed every time she worked with CHOC music therapist Brie Mattioli.

“Music promotes a sense of positivity, peace and normalcy in the room,” Brie says. “It wasn’t the nursery [her parents] planned to bring their baby home to, but it provides a sense of normalcy to families.”

The exhibit of 50 winning photographs was curated by a panel of distinguished judges including renowned photographer and author Anne Geddes. Showcasing the ways children’s hospitals help all children thrive, the online exhibit includes stories behind the photos, allowing viewers to read first-hand accounts from patients, parents, doctors and other healthcare providers.

Tamara Wroclawsky’s photograph was chosen from more than 370 images submitted by nearly 60 children’s hospitals across the country.

Joining Geddes on the judging panel were Sandy Adams, photo journalist and officer, The Exposure Group; Lily Francesca Alt, photo director, PARENTS magazine; Lori Epstein, photo director, National Geographic Kids Books; and Eric Gapsch, graphic designer, CHA.

View the online exhibit at www.childrenshospitals.org/photos.

CHOC Joins Global Community Dedicated to Improving the Patient Experience

CHOC Children’s has joined The Beryl Institute’s newly formed Pediatric Council, which represents a group of individuals committed to engaging with one another, sharing ideas and expanding the engagement of pediatric patient experience leaders in the Institute’s community.

Members of the Institute’s Pediatric Council are passionate about the advancement of pediatric patient experience and ensuring resources are available to support pediatric leaders in advancing the human experience in healthcare. The Pediatric Council will guide program development and advise The Beryl Institute on topics of relevance and issues pertaining to pediatric leaders and staff.

CHOC Customer Service Manager Sandra Schultz was recently certified as a patient experience professional through the Patient Experience Institute (PXI) and has been selected to serve on the Pediatric Council.

CHOC Children’s Customer Service Manager Sandra Schultz, CXPX

An independent, nonprofit organization committed to improving the patient experience through evidence-based research and professional development, PXI is a sister organization of The Beryl Institute, a global community similarly dedicated to improving the patient experience through collaboration and shared knowledge.

According to PXI, a certified patient experience professional (CPXP) is a leader who influences the systems, processes and behaviors that cultivate consistently positive experiences as defined by patients and families across the continuum of care. An international designation, CPXP certification highlights a commitment to the profession and to maintaining current skills and knowledge in supporting and expanding the field of patient experience.

As a member of the Pediatric Council, Schultz joins other industry leaders across the nation committed to engaging with one another, sharing ideas and expanding the engagement of pediatric patient experience.

“I am honored to serve on The Beryl Institute’s Pediatric Council and look forward to exchanging best and innovative practices that will further enhance the patient experience at CHOC,” Schultz said.

CHOC’s long-standing commitment to providing the best possible patient and family experience is guided by the principles of dignity and respect, information sharing, participation and collaboration. Feedback is actively solicited through surveys and forums, such as the Family Advisory Council, an important group of adult family members from a variety of backgrounds and family types who meet regularly to provide input on hospital initiatives.

CHOC Children’s leaders observe International Women’s Day

As the world celebrates International Women’s Day, we turned to CHOC Children’s female physicians and nursing leaders for insight and words of encouragement to other women pursuing healthcare careers.

Melanie Patterson, vice president, patient care services, and chief nursing officerWhen beginning your career in medicine, don’t focus on one trophy. The fields of medicine and nursing have so many opportunities within them; be courageous and try new things. The most important aspect of leadership and of career success is to be kind. Remember to form your own opinion — go into every relationship with your eyes open and stop looking through others’ eyes; they don’t always have 20/20 vision.

Dr. Mary Zupanc, pediatric neurologist and epileptologist & co-medical director of the CHOC Children’s Neuroscience Institute

When I went to medical school, women were not encouraged, and it was hard. There were a lot of things that happened that made it very difficult, but medicine is truly one of the most gratifying professions you will ever have. Every patient is different. I believe that if you really and truly listen, a patient and their family will give you the diagnosis you’re searching for. Everyone’s story is so fascinating, and that makes our work like being a detective. Sometimes I feel like Sherlock Holmes searching for answers. Then once you do find an answer, you need to work with the family to make sure the treatment works for their lifestyle, culture and religion. That makes the work challenging, fun and meaningful.

The best piece of advice that I’ve ever received is to never apologize for excellence. Anyone would want their doctor to strive for excellence – and that goes for any profession.

Amy Waunch, nurse practitioner and trauma program managerNever underestimate your capabilities. Do not shy away from opportunities and always take on new challenges. Believe in yourself but don’t be afraid to ask for help. You may not have all of the answers all of the time, but you do have the ability to learn and grow.

Spot growth opportunities when they present themselves because they are the key learning opportunities. You will know because they make you uncomfortable and your initial impulse will be that you are not ready.

Dr. Azam Eghbal, medical director, radiologySince I was 7 years old, I wanted to be a doctor and becoming one has been the best decision of my life. As a female immigrant, I was told that I could never get to medical school, which, of course, motivated and challenged me even more to do so. The best advice I’ve gotten is don’t be discouraged about all your falls and obstacles. Think how you can succeed to get where you want to be.

Dr. Amber Leis, pediatric plastic surgeonMy advice for women pursuing a career in medicine is to trust yourself! Early on in your career, it’s easy to be overcome by feeling like you are not up to the task ahead of you. Your unique qualities will become your greatest strengths, so just keep chasing your passion.

I have great faith that if I stay true to my core principles, the right path will open in front of me. I try not to set specific goals for the future and instead I give my best to where I am. It keeps me focused on what I am doing now, and not distracted by trying to maneuver into some future place.

The best piece of career advice I’ve ever gotten has been, “You get to choose what kind of person you will be.”

Dr. Jasjit Singh, medical director, infection prevention & controlMy advice for women pursuing a career in medicine is to follow your passion! There are few other careers that offer the personal satisfaction and the intellectual rigor that medicine does. Find a good mentor early in your career. Later, make sure your practice partners have abilities that you respect, and the talent to make your shared time together meaningful.

I learned early on that delegation and time management are important, particularly if you want to balance a medical career and family. You can’t always do it all, and prioritization is tantamount to success in all the different spheres of your life.

One of the best pieces of advice that I got was from a mentor during fellowship, who told me, “It’s not enough to just be a good clinician.” He showed me the importance of asking good research questions and pursuing new knowledge. He also encouraged my love of teaching upcoming generations of pediatricians!

Dr. Katherine Williamson, pediatricianI love being a pediatrician. I help take care of kids every day and partner with their parents to help keep them healthy. To me, being successful is loving what you do, because then working hard and being motivated to do well doesn’t feel like work – it’s fulfilling a passion.

When asked to give advice, I always say these three things: be yourself, don’t rush, and follow your heart every step of the way. Be yourself, always. No matter how busy or loud life gets, never lose sight of you who you are and what you want to do.  Don’t be in a rush. Enjoy the journey because that is where you learn who you truly are. Lastly, follow your heart in every decision you make. When I look back on what got me to where I am in my career, I realize that it was not one or two big decisions that were the deciding factor, but instead it was a million little decisions along the way. And with each of those decisions I followed my heart and my passion.