CHILDREN’S HANDPRINTS A PUBLICATION OF CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND

What’s for dinner?

KIM ALTER, EXECUTIVE CHEF AT HAVEN RESTAURANT cooks dinner with Akhil.

HOT WEATHER DANGER Open windows are a serious risk for children

SUMMER 2013 childrenshospitaloakland.org 2401 SHADELANDS DR., WALNUT CREEK

ooutpatientutpatient ddiagnosticiagnostic clinics ssurgeryurgery iimagingmaging • 15 Exam Rooms, plus a Cast Room • Lab Draw Same-day surgery is available for: Our pediatric imaging • Pediatric Specialists on site: • Audiology experts use radiation levels » Dental • Dentistry safe for even the youngest » Endocrinology patients. • Gastroenterology » ENT • General Surgery We have the only Child » Nephrology/Urology • Orthopedics Life Specialist in Contra » Neurosurgery • Otolaryngology (ENT) Costa County who helps » Nutrition • Ophthalmology emotionally prepare children » Occupational Therapy for surgical or diagnostic • Plastic & Hand » Orthopedics procedures. Surgery » Plastic & Hand Surgery • Rehabilitation » Psychiatry • Urology » Pulmonary Medicine » Urology

Children’s Walnut Creek Campus rates See more reviews at: 5 stars on Yelp! http://bitly.com/YelpChildrensWC

If I could (give) more My daughter had a I love this facility and stars I would. This place procedure here under the care my daughter was amazing. My 7yo had general anesthesia and received. She had a a procedure last week. the staff was wonderful! persistent problem that The people could not They really put us at ease, never seemed to be have been nicer or more explained every step very getting better. Other Children’s professional. The staff was clearly, and showed that facilities passed it off but Walnut Creek Campus AMAZING. Everything they cared. We really here, they didn’t dismiss about this place caters appreciated the kindness what was going on and 2401 Shadelands Dr. to kids. They made my they showed us. did everything possible Walnut Creek wife and I feel informed, — Laura K., San Ramon, CA to get to the bottom of it. comfortable and that my — Jackie B., Danville, CA son was in the best hands Ask your child’s pediatrician possible. If you ever have for a referral to do any procedure on a child this place has NO Appointments: 925-979-4000 equal. — John B., Danville, CA See what you’ve been missing: http://bitly.com/Shadelands

CONTRA COSTA COUNTY’S ONLY OUTPATIENT CENTER BUILT JUST FOR KIDS Table of Contents

5 LETTER FROM THE 8 THINGS TO DO PRESIDENT & CEO Infant and child CPR certifi cation courses in Walnut Creek 6 PERSPECTIVE Third Annual “What Sickle Cell Means Family Leave to Me” Art Contest A pediatrician’s thoughts on California’s family leave laws. Two-Week Sports Speed Camp hosted by Children’s Hospital ASK AN EXPERT Oakland Sports Medicine Center for Children’s pediatric emergency Young Athletes medicine specialist explains the best way to save your child’s permanent 9 KIDS CORNER tooth if it gets knocked out. Last issue’s puzzle solution. Try your hand at logic puzzle #7. 7 WHAT’S NEW Insulliance, a new mentoring program 10 RESEARCH UPDATE for type 1 diabetes patients, launches Children’s fi rst fellow in the Pediatric at Children’s Hospital. Surgery’s Clinical Research Program makes remarkable discovery. Written by Lisabeth Kirk. 18 Help stop heart disease with CHORI’s Family Heart and Nutrition Center. It’s Not Asthma Written by Patty Siri. Cystic Fibrosis Center helps Mackenzie 12 MEDICAL EXPERTS live a healthier life. Written by Susie Longtime NICU Nursing Manager Caragol. Susie Adams to retire. Written by Susie Caragol. To Russia, with Love: Interesting centennial fact 24 FOOD CORNER Creating a safer hospital environment What’s for Dinner? for the future. Written by Susie Homemade Gnocchi Caragol. Haven Restaurant’s Executive Chef Kim Alter shares her culinary talents 14 FETAL MEDICINE with Akhil. How to contact the Fetal Medicine Team at Children’s Hospital 28 GIVING BACK Writers and musicians take the stage Fetal MRI: a valuable tool for for Children’s Hospital at the Fourth 14 detecting fetal abnomalies Annual Notes & Words 21 KEEPING SAFE FROM INJURY Skateboarding and music as a Detecting Mili’s Hot Weather Danger positive force for change Open windows are serious risks Kiewit Charity Golf Classic raises Heart Defect for children. Written by Children’s over $81,000 for Children’s Hospital Trauma Department. Oakland Rite Aid raises $146,081 through Before Birth 22 BUILDING PROJECT iconic balloon sales Fetal diagnosis lets doctors coordinate Honoring the past; looking to the lifesaving eff orts. Written by Susie future. Building a legacy through charitable gift annuities Caragol.

CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND BOARD OF DIRECTORS

James Keefe, Chair Michael LeNoir, MD, Secretary Harold Davis Leslie Littleton Ori Sasson Melba Muscarolas, Rena Brantley Janet King, PhD Bertram Lubin, MD Shahan Soghikian Vice Chair Thomas V. Bret, Esq. Watson Laetsch, PhD Betty Jo Olson Harold C. Warner, PhD Arthur D’Harlingue, MD, Jeff rey Cheung Louis Lavigne Hitendra Patel, MD Richard Whitley, MD Treasurer Matthew Cox James Levine Edward Penhoet, PhD Jamie Bertasi Zerber CHILDREN’S HANDPRINTS the east bay’s premier golf tournament

Children’s HandPrints is a publication of SCORE FORE KIDS 2013 Children’s Hospital & Research Center Oakland, 747 52nd Street, Oakland, CA 94609; MON., SEPT. 16, 2013 510-428-3000. Claremont Country Club, Oakland, CA Bertram Lubin, MD President and Chief Executive Offi cer To reserve your foursome or become a sponsor, contact Angela Rundles at Marketing Communications Department Cynthia Chiarappa [email protected], or Vice President, Strategy call 925-370-7496.

Tina Amey www.scoreforekids.com Administrative Assistant

Debbie Dare Creative Director

Erin Goldsmith Media Relations Manager

Kevin Kimbrough Marketing Manager

Michele Repine Internet Marketing Director

Erika Sandstrom Senior Graphic Designer

Julie Fuller Offi ce Clerk

Contributing Writers Kim Alter Susie Caragol Catherine Claus, MD Children’s Trauma Department Jackie Kersh Lisabeth Kirk Patty Siri

Contributing Photographer Alain McLaughlin

The medical information contained in this newsletter should not be substituted for advice from your child’s pediatrician.

If you do not wish to receive future 8th Annual San Francisco Bay Open Water Swim issues of this publication, please email to [email protected] your name and address as they appear on the mailing panel. SWIM TO FIGHT CANCER

If you’d like to write to the editor of SAT.,,, OCT. 5, 2013 Children’s HandPrints, please send an email to [email protected]. Money raised at the 8th Annual San Francisco Bay Open Water Swim stays in our community, supporting Bay Area pediatric cancer research and treatment.

Benefi ting

and www.childrenshospitaloakland.org Register. Bring a Friend. Make a Diff erence. www.swimacrossamerica.org/sf

4 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org A WORD FROM DR. LUBIN PRESIDENT & CEO

Dear Friend and Neighbor, In the last issue of HandPrints magazine we asked for feedback on this publication.

Needless to say, we are grateful for the information and for the many kind notes that came with the responses.

Some of the more interesting results were: People all over the Bay Area • 83% of our readers say they have discussed what are reading HandPrints! they’ve read in HandPrints with family or friends. • On topics that you’d like us to cover in future issues, 68% want tips on keeping healthy, and 67% like our nutrition information. • The most read sections are Food Corner (84%); Ask an Expert (68%); patient stories (64%); and Research Update (63%).

We received a lot of story ideas from readers, too. We will do our best to make sure we continue to provide you with useful health information. After all, our goal is that every child live the healthiest life possible. To see back issues, go to www.childrenshospitaloakland.org If you’d like to send comments to the HandPrints editor, you can send an email to [email protected].

Cheers,

Bertram Lubin, MD Children’s Hospital & Research Center Oakland President & Chief Executive Offi cer

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 5 PERSPECTIVE ASK AN Family Leave EXPERT Even in progressive California family leave laws are short-sighted and out-of-date.

How to On March 26, 2013, KQED 88.5 FM radio’s “Perspectives” save a program aired Children’s pediatrician Catherine Claus, MD, permanent and her thoughts on family leave. tooth

he mother of my newborn $1000 per week. There are a handful Tpatient, herself only 17, told me of other states with similar benefi ts. she was returning to work six days Still, our state eff orts fall short. after giving birth. As I raise two Gaps in benefi ts can be complicated “One of my kid’s friends had his young children of my own while and diffi cult to navigate. A study in permanent tooth knocked out. training as a pediatrician at Children’s 2007 showed that only 28 percent What should I do if that happens Hospital Oakland, her story gives me of Californians were aware of the to my kid?” pause. program. We can do better. There are a number of steps you can With new healthcare policies Babies with mothers who return take to help successfully save the coming, it may be time to re- to work within 12 weeks are less tooth. Time is of the essence, and you think parental leave and its role in likely to be breastfed or up-to- are more likely to save the tooth if you begin treatment within 60 minutes of preventative medicine. We are one of date on immunizations, and more the injury. four countries that don’t guarantee likely to exhibit behavior problems. paid time off to new parents; Liberia, Companies that off er parental leave Step 1: Find the tooth. Papua New Guinea, and Swaziland have a higher employee retention Step 2: Rinse it gently under running are the others. A 1993 law allows 12 rate and minimize costly turnover. water, but do not scrub the tooth. weeks of leave to workers but only This is a compelling public health Step 3: Try to replace it in its socket in companies of 50 or more, without issue with considerable fi nancial and apply gentle pressure. job protection or paid time off . considerations. I believe current Step 4: If you can’t replace it, put it in California became the fi rst policies are myopic. Improvements a glass of milk. If milk is state to enact paid family leave in need to include adequate wage not available, you may 2002, but the benefi ts are limited. compensation, job protection, and use saliva or saline as an Employees must have contributed extended leave. alternative. to State Disability Insurance. Paid My patient and her mother are Step 5: Immediately benefi ts last for six weeks over up against the odds: We could do a go to your dentist or 12 months to care for a child or a better job at supporting children’s nearest emergency seriously ill family member. The health and well-being by improving room, where the tooth ceiling, however, is 55 percent of care of their working parents. will be re-implanted and earnings, or a maximum of about splinted in place. —Karim Mansour, MD, Pediatric Emergency Medicine Specialist Catherine Claus, MD, is a medical resident at Children’s Hospital & Research Center Oakland. Watch the video: http://bit.ly/CHO-lost-tooth The “Perspectives” radio series features daily listener commentaries since 1999. To hear Dr. Claus’s commentary, go to http://bitly.com/cateclaus. If you have a question you’d like to ask, email [email protected].

6 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org FOODWHAT’S cool peeps! CORNERNEW

Insulliance, a New Mentoring Program for Type 1 Diabetes Patients, Launches at Children’s Hospital

hildren’s Hospital Oakland’s CEndocrinology Department and a My fi rst mentoring experience at Children’s new diabetes organization called Beta Hospital was invigorating. I felt like I really Connect have, together, launched a mentoring program called Insulliance for connected with my mentee. I cannot explain patients who are newly diagnosed, who “ how empowering it is to impact someone’s life are struggling to manage their diabetes, or who have been admitted to Children’s for the positive. Diabetes is not always a walk in for a type 1 diabetes-related concern. The the park, but by mentoring at Children’s, I hope mentors provide emotional support and helpful information to patients living to remind patients that they are NEVER alone with type 1 diabetes and their families. on this journey and inspire them to live well They hope to improve patients’ diabetes with diabetes. management through self-empowerment. A goal of the Insulliance program is to help —Emily Swide, Insulliance mentor normalize the condition—to show patients that their hardships are shared by others. In addition to providing peer support, For program questions, please contact the Insulliance founders: Insulliance mentors provide patients with Heather Gabel, [email protected] ” a list of resources such as smartphone Sarah Afzal, [email protected] app recommendations and a community resource list (e.g., sports camps and social groups for teens, young children, or parents of children with type 1 diabetes) in an attempt to help patients connect with others who face the same life diffi culties. Insulliance mentors are college-age or recent college graduates who live with type 1 diabetes. Each mentor has undergone an extensive and thorough interview and training process. Mentors will be on site Mondays, Tuesdays, and Thursdays. On-call mentors for inpatients (new diagnosis, DKA, hypoglycemic episode) are available if given 24-hour notice. There are plans to expand the program to the satellite endocrinology clinics in Walnut Creek, Pleasanton, and Marin. Further, the founders of Beta Connect are working to bring Insulliance programs to other hospitals so as to serve a greater base of youth with diabetes. Insulliance Back row (l-r): Emily Roth, Emily Swide, Vanessa Hayden, Katie Craft (Child Life Specialist), Amy Warner (Social Worker), Trevor Thompson, Lucas Fogarty, is a promising initiative, and Children’s Kristin Avicolli (Social Worker), Carrie Stearns. Front row (l-r): Raychel Cooke, Hospital Oakland is leading the movement. Heather Gabel, Sarah Afzal.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 7 THINGS TO DO

INFANT & CHILD CPR CERTIFICATION COURSES IN WALNUT CREEK 3RD ANNUAL TUES., AUGUST 6, 2013 “WHAT SICKLE CELL MEANS 6:30–9 P.M. TO ME” ART CONTEST To celebrate Sickle Cell Awareness Month in American Heart Association’s Heartsaver® First Aid CPR AED September, anyone age 5 and up is invited to express is a classroom-taught, video-based, instructor-led course that what sickle cell disease means to them through art in teaches critical skills needed to respond to a fi rst aid, choking, any medium. Select artwork will be displayed at the or sudden cardiac arrest emergency until help arrives. John “Larry” Valley 103 Heroes Blood Drive on Course includes: Sept. 21, 2013.* • Infant, child, and adult CPR and choking training • Hands-on AED training Art Contest Rules and Regulations • Entries will be judged on originality and creativity. Upon completion, students receive an American Heart • Entries may not contain any profanity or nudity. Association Heartsaver CPR and AED course completion card • Contest is open to everyone (sickle cell patients and that is valid for two years. non-patients) ages 5 and up (categories: ages 5-12; 13-21; 21+). Fee: FREE • 1st place: $500, 2nd place: $250, 3rd place: $100 (in Register: www.bitly.com/cpr-wc each category). Location: Children’s Hospital Oakland Walnut Creek Campus, • All decisions by the judges are fi nal. 2401 Shadelands Dr., Walnut Creek • All entries are due by Friday, Aug. 30, 2013, 5 p.m. • Winners will be contacted by Sept. 13, 2013. Contact: Kevin Kimbrough, 510-428-3812 • Each entry must be labeled with contestant’s full or [email protected] name, phone number, email, and a brief description www.childrenshospitaloakland.org of artwork submitted. • Artwork will be returned to the artist following the culmination of contest events. All digital entries must be submitted to: save Fred at [email protected] a life! More info: Call Fred McFadden at 415-354-1381. *Artwork may be used in print materials and displayed at the discretion of Blood Centers of the Pacifi c.

CHILDREN’S HOSPITAL OAKLAND SPORTS MEDICINE CENTER FOR YOUNG ATHLETES TWO-WEEK SPORTS SPEED CAMP AUGUST 5-16, 2013 We will give you the M-F, 2-4 P.M. training secrets that will • Increase your speed, quickness, and agility make you faster than • Improve your fl exibility so you can run faster you’ve ever been before! • Gain CORE stability for more effi cient movement • Participate in fun teamwork drills and games!

Location: Berkeley High School football fi eld, 1980 Allston Way, Berkeley Instructors: Jamie Faison, ATC, CSCS, and Sports Medicine staff RSVP: Sports Medicine Center, 510-428-3558, option 3 Space limited to 25 athletes, aged 12-19. Please call to reserve your spot. Cost per session: $250/athlete

8 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org KIDS Children’s Hospital’s CORNER Whiz Kids LOGIC PUZZLE #7 LOGIC PUZZLE #6 What numbers go in the blanks? PROBLEM: ANSWER Using only four 9’s, create a math 1 This is Pascal’s Triangle. There are always 1’s along equation that equals 100. 1 1 the sides. To get the other 1 2 1 numbers, we add the two 1 3 3 1 numbers that are above. For 1 4 6 4 1 example, we added 1 + 1 to get the 2 and we added 1 + 3 1 5 1100 1100 5 1 to get the 4. YOUR ANSWER:

Thank you all for your entries!

Submit your answer, and if it’s correct, you’ll win a prize. If you send in a photo of you holding the solution, you might be in the next issue!

Send your answer by July 31, 2013 to: CHILDREN’S HOSPITAL OAKLAND, COMMUNICATIONS DEPT., 747 52ND ST., OAKLAND, CA 94609

NAME______AGE ______

ADDRESS ______JD from Alamo; Thomas from Albany; Gabriel from Brentwood; Sabrina from Concord; Bardia from CITY ______Dublin; Adelina, Drake, Haasika, Krishna, Michael, and Vaidehi from Fremont; Bor from Mill Valley; STATE ______Maribeth from Moraga; Jayden from Oakland; Dhruvi and Oren from Pleasanton; Avalon from ZIP ______San Anselmo; Adhiti, Sachi, and Vikram from San Ramon. Nice representation from all over the Bay Area! Keep your entries coming!

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 9 RESEARCH UPDATE

Children’s First Fellow in the Pediatric Surgery’s Clinical Research Program Makes Remarkable Discovery

or the past three years, CHORI and Children’s, Dr. Bell developed Children’s Hospital Oakland have a clinical project analyzing Fbeen working with Clinical Scientist specimens from premature and Pediatric Surgeon Wolfgang Stehr, babies at the hospital for MD, and CHORI Senior Scientist Frans certain factors that might Kuypers, PhD, to develop a translational contribute to NEC. He then research program in the pediatric surgery established an animal model department at the hospital. Those efforts of the disease at CHORI have culminated with the department hiring and used it to investigate the its fi rst surgical research fellow. role of the stress hormone Robert Bell, MD, a resident in the corticotropin-releasing factor UCSF East Bay Surgery Program, joined (CRF) in NEC’s development the Children’s Hospital & Research Center and progression. Oakland pediatric surgery lab in July 2011. “What Dr. Bell found is Working under the mentorship of Drs. Stehr that inhibiting CRF prevented and Kuypers, Dr. Bell has been investigating the animals from developing necrotizing enterocolitis (NEC), a common NEC. The research is truly disease in premature babies born as early as remarkable and suggests that 25 or 26 weeks of gestation. CRF may be the linchpin Premature babies of this gestational age manipulating everything that Drs. Stehr and Bell in weigh as little as 1 pound, as opposed to full- goes on in NEC,” says Dr. the NICU. term babies who can weigh anywhere from Stehr. “While Dr. Kuypers 6 to 10 pounds. When these premature and I provided oversight and infants fi rst start eating, their intestines can laboratory space, Dr. Bell be too underdeveloped to handle the food. demonstrated incredible initiative. He is a As a result, they develop NEC, and the very scientifi cally oriented surgery resident entire intestinal system begins to fail. and a very powerful fi rst fellow for our “There is nothing more heartbreaking or clinical surgery research program.” more motivating for a pediatric surgeon than Dr. Bell’s discovery received fi rst prize coming across one of these children whose for Best Presentation at the University of entire small bowel has died from this disease. California, San Francisco’s Department of There is nothing you can do but artifi cially Surgery’s 26th Annual Resident Research especially rewarding to represent CHORI, feed them until they can have an intestinal Symposium, held on April 5, 2013. Children’s Hospital Oakland, and the transplant or they die,” says Dr. Stehr. “I really appreciate the award,” says Dr. East Bay Surgery Program in front of our During the course of his fellowship at Bell. “It feels great to be recognized. It’s colleagues across the bay, and to give them a small example of the spectacular work being done here Frans A. Kuypers, PhD in Oakland.” Senior Scientist, Children’s Hospital Oakland Research Institute Drs. Bell and Stehr are continuing to investigate CRF’s Dr. Kuypers’s research focuses on membrane subcellular effects in newborns and biology and hemoglobinopathies. His hope to secure additional funding investigations center on the definition of factors to fully elucidate the critical role and proteins involved in the red blood cell that CRF may play in NEC. membrane’s lipid bilayer organization and how they relate to sickle cell disease and thalassemia.

10 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org RESEARCH UPDATE

Participate in Help stop heart disease a food study!

he Cholesterol Research Center, led by Director and Senior Scientist Ronald Krauss, MD, conducts Dietary Research Study #1 Tclinical research on cardiovascular disease (CVD) risk and prevention, spanning childhood through adulthood. The Center is focusing on several different projects, including a 14-Week Study on Diet and collaboration with the Healthy Hearts program and pediatric Heart Disease Risk cardiologists that links research and the medical management of patients with obesity and cardiovascular issues; studies To be eligible, you must be: showing that reducing carbohydrate intake benefits the most • Age 22 years or older common blood cholesterol profile related to heart disease • Have a systolic blood pressure <160 and diastolic blood risk; and new research studies investigating how different pressure between 80-95 food sources of carbohydrate, fat, and protein can affect risk • Not on certain drugs, including lipid, blood pressure, or for heart disease and diabetes. diabetes drugs, or hormones In 2011, Dr. Krauss and colleagues launched the Family • Able to travel to our clinic in Berkeley Heart and Nutrition Center (FHNC), which takes an If you complete our study, you will get: integrated approach to basic and clinical research to prevent • Free meals for 10 weeks of the study cardiovascular disease in all ages. The FHNC was conceived • Blood pressure and lab work results as a means to develop and apply knowledge of genetic and • A home blood pressure monitor lifestyle influences to improve management of CVD risk for • $1000 for completing the study patients of all ages in a community-based clinical research program. By studying genetic and lifestyle factors affecting CVD risk in a family-based clinical setting, the FHNC Dietary Research Study #2 is positioned to become a nationally and internationally recognized center of excellence in the acquisition, 18-Week Study on Dietary Protein implementation, and dissemination of knowledge for reducing the burden of CVD across the full age spectrum and and Heart Disease Risk among diverse populations. The FHNC is an ambitious program, but one that To be eligible, you must be: leverages existing clinical and research infrastructures • Age 21 to 65 to provide an important service to our community. By • Able to travel to our clinic in Berkeley developing partnerships with existing providers and creating If you complete our study, you will get: new evidence-based programs to develop a comprehensive, • Free food for 14 weeks; eat your own food for 4 weeks community-based network of services, the FHNC will • Lab work results become the coordinating body and comprehensive outreach • $1200 for completing the study program that is greatly needed to help children and families • An optimal 4 weeks of free weight loss counseling after truly understand and reduce their risk for CVD. In order to bring services to those who need it most, the FHNC needs your support. Through this program, all aspects of family life for our patients will be enriched. By helping the FHNC realize its goals, you can help build brighter futures for people in need. To fi nd out more about these studies, go to: To support the Family Heart & Nutrition Center, contact: Ronald M. Krauss, MD www.CRCstudy.org Email: [email protected] Questions? Call toll-free, at (866) 513-1118. Phone: 510-450-7908

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 11 MEDICAL EXPERTS Int  t  g Longtime NICU Nursing  nt i F act Manager Susie Adams to Retir usie Adams, RN, To Russia, with Love will be sorely missed “Susie is not afraid to venture to help the girl due to her Swhen she retires into new territory,” says small size. The Soviet Union as Nursing Manager of Art D’Harlingue, Director wouldn’t perform surgery with the Newborn Intensive of Children’s Neonatology congenital heart abnormalities Care Unit (NICU) at department of Susie Adams, until the patient weighed 44 Children’s Hospital & Children’s NICU Nursing pounds. About 50,000 Soviet Manager, who is set to retire this children with these conditions Research Center Oakland fall. “In the early 1990s, we had died before their first birthday. in September. a medical exchange program McGowan, with J. Niles Young, “One of Susie’s for several years with a hospital MD, Chief of Cardiac Surgery, greatest contributions has in St. Petersburg, Russia. They and Stanley Higashino, MD, been mentoring others,” were 25 years behind the times Chief of Cardiology, spent a in pediatric medical practice. year convincing the Soviet and says Vice President of Susie helped instruct their American bureaucracies to get Patient Care Services and nurses, modernizing their Maria into the United States. Chief Nursing Executive Susie Adams, RN (right) with Renda Pennix, RN NICU.” In June 1989, with the Nancy Shibata, RN, MSN. They worked together for over 30 years. Susie has fond memories blessing of the Soviet Ministry “I can’t imagine how many of that experience. “It was of Health, a Heart to Heart a highlight of my career to team—including Drs. Higashino, people Susie has helped help improve medical care in Christian Hardy, and Gregg develop over the years. Her work ethic has inspired other nurses, and she an international setting,” she Helton—traveled to Moscow leaves a legacy for the future with her accomplishments in patient safety says. “We developed a model to perform more surgeries. In and her focused attention on neonatal care. Plus, she acts as if every one NICU there, and we’ve stayed January 1990, a 15-member of those babies is hers.” in contact with some nurses, team went to Leningrad’s one of whom is now in the U.S. Children’s Hospital #1 for two Originally from Maryland, Susie fi nished nursing school there before working toward her doctorate in weeks performing 10 surgical working as a pediatric nurse in Pennsylvania, Maryland, and Florida. nursing education. So we had a procedures and helping to She then earned her pediatric nurse practitioner certifi cate (PNP) at positive impact.” establish the first advanced Johns Hopkins. Afterward, she worked as a nurse for economically Children’s also brought pediatric cardiac center in the disadvantaged children in Appalachia. Then, in June 1976, Susie moved Russian children to Oakland—to Soviet Union. They brought with perform open-heart surgery them over $500,000 worth of to California as staff nurse in the NICU. “I wanted a nursing career that on Maria Senotova (7) from donated medical equipment and was faster-paced and to go back into a pediatric hospital setting,” she Leningrad in January 1989 and supplies. The story was covered recalls. heart surgery on Maxim Shapiro by the Oakland Tribune and was Within a short time, Susie became a night nursing supervisor for the (6) from Minsk in Feb. 1990. entitled, “Mission of Mercy.” entire hospital. In 1979, she was named “acting” nurse manager in the Children’s resident Jo Ann CBS’s 60 Minutes accompanied McGowan met Maria’s mother the team to Russia. Leslie Stahl NICU. That job was supposed to last three months, she notes, “but I’ve in Leningrad and learned that was the correspondent. been here ever since.” Soviet doctors were unable A few of Susie’s accomplishments over the years include: • Embracing medical advances and providing staff with educational support to learn new technology and protocols. • Engendering a sense of loyalty among her staff—56 percent of nurses in the NICU have been at Children’s for more than 20 years. • Helping to develop a Fetal Medicine Center that ensures Children’s specialists can treat newborns right away. • Collaborating with developmental specialists and clinical nurse practitioners to institute a developmental program for NICU babies, including such innovations as lessons in infant massage for parents and “kangaroo care.” • Emphasizing family-centered care, adopting practices that assist the NICU team in supporting parents and siblings. One of Susie’s most recent accomplishments is helping the NICU team establish an impressive record in preventing bloodstream infections

12 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org MEDICAL EXPERTS

Says Susie about her working trip to Russia in the early 1990s (see Creating a Safer Hospital sidebar story on the left): Environment for the Future The Russians were hildren’s Hospital is developing they represent a signifi cant problem for suspicious of us Cinnovative practices and working with infants in NICUs who are often premature “ because nobody other hospitals to target specifi c hospital- or already very sick. As of May 17, 2013, there ‘volunteered’ for acquired conditions (HACs) and improve the NICU reached an impressive record of humanitarian eff orts. We patient outcomes. 485 days without one of these infections. even had a KGB agent Most recently, Children’s joined a Only a few years ago, such infections were who followed us. new collaborative of children’s hospitals considered to be practically unavoidable. focusing on patient safety, including “We almost expected infections because HACs. Originally formed by eight of how fragile our little patients are,” says hospitals in Ohio, the Ohio Children’s Clinical Nurse Specialist Carolyn Lund, associated with intravenous central” lines. Hospitals’ Solutions for Patient Safety now RN, MS. The NICU has had no central-line includes more than 70 children’s hospitals “We solicited feedback from staff infections for more than 15 months. nationwide. whenever there was an infection,” says Characteristically, Susie refuses to take all One especially notable accomplishment pediatric neonatologist Priscilla Joe, MD, the credit. “This was a quality issue that in reducing HACs at Children’s is the the physician leader on the project. we devoted a lot of time and energy to success in the Newborn Intensive Care “We went back to the drawing board improve—it was a complete team effort,” Unit (NICU) in preventing central line- to determine the cause of each infection, she explains. associated bloodstream infections. A asking ‘Why?’ until we found a solution, Susie’s success in rallying the team “central line” is a catheter (tube) that passes which helped develop better precautions. stems from her ability to communicate through a large vein and ends at or close “We’ve also created a culturally safe effectively with people at all levels in the to the heart. In the NICU, a central line environment for staff and parents to stop hospital, according to NICU Clinical is used to deliver fl uids, nutrients, and anyone—including physicians—and ask Nurse Specialist Carolyn Lund, RN, medications when a baby has serious health if they have washed their hands before MS. “Susie can be calm and diplomatic problems that preclude giving medications touching a baby,” she emphasizes. “It all in diffi cult, complicated situations,” she orally or make oral feedings impossible. boils down to getting everyone to believe observes. “She knows everyone, across all A bloodstream infection can result when that we can do this.” disciplines. Plus, she is really, really smart bacteria or other germs travel down a “Medical care has become increasingly and combines common sense with wisdom central line and enter the blood. complex, and we all assumed that and knowledge. That helps her work with According to the Centers for Disease complications were inevitable,” says doctors, nurses, other staff—and families— Control and Prevention (CDC), an Director of Neonatology Art D’Harlingue, to achieve the best patient care.” estimated 41,000 central line-associated MD. “Now, instead of expecting these Director of Neonatology Art bloodstream infections occur in U.S. infections, we’re working to keep up our D’Harlingue, MD, who has worked with hospitals each year. The CDC also notes record of zero infections. Patient safety is a Susie since 1983, explains that she has many that these infections are much more top priority, and we take it very seriously.” responsibilities, managing approximately common among children than adults, and 150 nurses and a budget of about $23 million. “Still, Susie’s not afraid to ‘get her hands dirty’ and pitch in with regular nursing duties like inserting intravenous central lines in very tiny babies,” he says. Besides being a team player and a straight-shooter who approaches problems head-on, Susie is well known for her sense of humor. “While our work in caring for NICU these babies is serious, we need to have a baby with a sense of humor and enjoy our work, too,” Susie explains. “I like to ease the tension a central line bit.” She also says her motto is: “ To save time, let’s just assume I know everything.”

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 13 FETAL MEDICINE

ndrea Jedwab and Adrian Breitfeld are the proud parents of a lively baby girl who fills their life with A joy. But little Mili Breitfeld, who joined her then- 20-month-old brother Liam in May 2012, is very lucky her mom believed in getting good prenatal care. Andrea and Adrian were preparing to move to the Bay Area from Los Angeles when her obstetrician’s office called to say there was something unusual about the prenatal ultrasound they had performed early in Andrea’s pregnancy. “They wanted me to come in for another ultrasound in L.A., but we were moving to Emeryville that following weekend,” she recalls. “So as soon as we could, we found a local obstetrician at Alta Bates, who ordered the follow-up ultrasound.” Her new doctor also saw something that “wasn’t right.” He referred Andrea to the Pediatric Cardiology Division at Children’s Hospital & Research Center Oakland, where they performed a fetal echocardiogram when she was 18 weeks pregnant. “A fetal echocardiogram is a type of ultrasound that provides a moving picture of the developing baby’s heart,” says Children’s Chief of Pediatric Cardiology Howard Rosenfeld, MD, an expert in fetal echocardiography. “In this case, the ‘echo’ showed a serious defect called ‘transposition of the great arteries,’ in which the two large blood vessels that carry the blood out of the pumping chambers of the heart—the pulmonary artery and the aorta—were ‘transposed,’ or switched, Detecting Mili’s during the development of the heart.” Heart Defect Early Detection and Correction Critical to Survival Most cases of transposition of the great arteries are Before Birth diagnosed in the first hours or days of life because the baby has low oxygen levels and may appear “blue” rather than a normal, healthy color. Babies with this defect also breathe rapidly, and their hearts work harder than normal Fetal Diagnosis Lets Doctors to try to get more oxygen to the body. If the defect is not corrected, there is a 50-percent Coordinate Lifesaving Eff orts chance the baby will die within the first month of life and a 90-percent chance of death within the first year. Any delay in diagnosis and treatment may result in serious problems for the child, including brain damage or damage to other organs such as the liver and kidneys. Children’s cardiologists and cardiac surgeons are an integral part of the Fetal Medicine Center at Children’s. This center cares for the fetus before birth and provides rapid diagnosis and management of fetal abnormalities by a team of pediatric specialists. Because Mili’s heart defect was diagnosed during pregnancy, the team at Children’s was able to prepare a plan of care for Mili’s family.

14 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org FETAL MEDICINE

Mili at her regular checkup at Children’s Hospital Oakland’s Cardiology clinic.

“It’s a great advantage to have a prenatal diagnosis for conditions like Mili’s,” says Dr. Olaf Reinhartz. “This type of surgery could not be performed in a hospital without pediatric cardiac surgery specialists.”

Children’s Fetal Medicine Center condition at birth would have been even Dr. Rosenfeld coordinated the care has had an association with Alta Bates more traumatic, though. Having the plan with Medical Director of Cardiology Hospital in Berkeley and John Muir advance notice helped a lot; we were well Hitu Patel, MD, and Chief of Pediatric Hospital in Walnut Creek for many prepared.” Cardiac Surgery Olaf Reinhartz, MD. years. The program is expanding. “Our Andrea agrees: “It was definitely scary Dr. Patel, who specializes in cardiac goal is to provide a fetal medicine to get the diagnosis and learn something catheterization procedures, would be program that responds to the needs of was wrong with our baby’s heart. Then we responsible for improving and stabilizing families, obstetricians, and perinatologists had our first follow-up appointment with the oxygen flow to the baby’s body. Dr. throughout the East and North Bay,” says Dr. Rosenfeld, who explained everything Reinhartz would perform the surgery to Dr. Rosenfeld. “By working closely with very carefully and clearly. I was grateful correct the transposed arteries. families and care providers in complex to learn about the defect early in my The Children’s medical team was pregnancies, we can safeguard fetal health pregnancy so I could be prepared for what notified as soon as Andrea went into labor, while honoring parents’ desires to deliver would happen. The people at Children’s and baby Mili was transported from Alta their babies close to home. We also can and my obstetrician at Alta Bates were Bates to Children’s within hours of her provide families and their physicians prepared and knew what to do, too. That birth. Adrian and his brother went to with appropriate information so they can wouldn’t have happened if we hadn’t Children’s to be with Mili while Andrea prepare themselves for what to expect.” known about the heart defect ahead of recovered overnight at Alta Bates. Andrea and Adrian were frightened by time.” the diagnosis of their baby’s heart defect, Going from Blue to Pink as any parent would be, but they did Getting Ready for Mili’s Birth and The medical team got to work right appreciate the time they had to prepare. Surgery away raising Mili’s blood-oxygen level, “I was scared to death,” Adrian Andrea kept up her regular prenatal which was a dangerously low 60 percent. admits. “Early on, waiting for the test exams with her obstetrician and additional The doctors used medication to help results was difficult, not knowing what appointments with Dr. Rosenfeld, with keep open a small blood vessel near the might be wrong. Being surprised by Mili’s frequent echocardiograms to monitor the heart that connects the pulmonary artery baby’s heart.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 15 FETAL MEDICINE

and the aorta, allowing some mixing of oxygen-rich blood with oxygen-poor blood. Then Dr. Patel performed a heart catheterization procedure to create an opening between the upper chambers of the heart to allow more blood to mix. Dr. Patel notes that fetal diagnosis of a condition like Mili’s helps take the guesswork out of what procedures will be necessary. “The trick is to stabilize the baby quickly,” he says. “Fortunately, the technology for cardiac catheterization just keeps getting better and better, and the equipment is now designed just for babies. As soon as Mili’s catheterization was done, her blood-oxygen level rose to 85 percent, which was a very good (above) Howard Rosenfeld, MD, consults with Mili’s parents. (below) A light moment with improvement.” Hitu Patel, MD. Mili’s father noticed the difference right away. “The attention and care Mili sure she was ready for corrective surgery “Basically, we take the aorta and the received from the doctors at Children’s three days after her birth. pulmonary artery off the places where was evident from the get-go,” Adrian says. they connect to the heart and move “Dr. Patel’s optimism helped me relax. I A “Fantastic” Surgery them to the proper position,” says Dr. was concerned because when she went in Correcting transposition of the Reinhartz. “We also have to switch the to the catheterization lab, she was blue. great arteries involves a complex smaller coronary arteries that supply When she came out about an hour later, surgical procedure called an “arterial blood to the heart muscle itself. This she was pink!” switch.” Mili’s surgeon, Dr. Reinhartz, is technically the trickiest part of the That first night, Mili needed some describes the arterial switch procedure surgery because the coronary arteries are assistance with her breathing, and for as a “fantastic surgery” that illustrates much smaller blood vessels that require the following two nights, the staff at the advances made in pediatric cardiac microsurgical techniques that were not Children’s kept a close watch to make surgery. available until about 20 years ago.” After surgery, Mili’s blood-oxygen level went up to 100 percent right away. She spent only 12 days in the hospital after surgery, and Dr. Reinhartz notes it is very unlikely she will need another surgery. “It’s a great advantage to have a prenatal diagnosis for conditions like Mili’s, and to schedule the birth near the hospital where surgery can be performed,” he adds. “This type of surgery could not be performed in a hospital without pediatric cardiac surgery specialists. Having a prenatal diagnosis can make a big difference in the baby’s chances of survival.” During the five-hour surgery, Mili’s mom and dad paced the floor, but they note that they received great care, too. “Everyone was so attentive and caring,” Andrea explains. “They gave us a pager,

16 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org FETAL MEDICINE

and people came out every hour or at Children’s in Oakland. Mili’s Because Mili’s heart defect so to give us updates. We were very cardiologist, Dr. Rosenfeld, who will happy with all the care we received continue to follow her case until she was diagnosed during at Children’s, and we have absolute reaches age 21, expects her to lead a confidence in the doctors. We were in completely normal life. pregnancy, the team at good hands, and it was wonderful to “We’ve been blessed that Mili’s Children’s was able to be at a hospital close to home.” surgery was successful and that she Mili’s family recently moved recovered so quickly,” says father prepare a plan of care for again, this time to a larger home in Adrian. “It’s wonderful to be able to Pleasant Hill, where they will still be boast that Mili is a beautiful, healthy Mili’s family. close to the expert care they found baby. And she is very, very smart!”

FETAL MEDICINE TEAM FETAL MRI: A VALUABLE TOOL FOR DETECTING FETAL ANOMALIES AT CHILDREN’S OAKLAND Children’s Hospital & Research Center Oakland negative eff ect on the imaged fetuses. currently is the only hospital in the East Bay to Pregnant patients can be accepted to undergo The Fetal Medicine team at off er fetal MRI (magnetic resonance imaging) MRI scans at any stage of pregnancy but are Children’s Hospital Oakland as a complementary diagnostic imaging tool preferably performed in the second trimester serves as a single point of when suspected fetal anomalies are not well after 20 weeks of gestation.” contact for expectant parents assessed by ultrasound. A proven, well- with prenatally diagnosed established diagnostic imaging technique, MRI conditions. uses a strong magnetic fi eld and radio waves CONSULTATION & REFERRAL Our team of specialists to obtain pictures of the inside of the body Patient referrals for fetal MRI should be works with obstetricians, without using radiation. submitted on Children’s Hospital’s standard perinatologists, and There are numerous conditions for which referral form and faxed to the Diagnostic pediatricians throughout fetal MRI imaging may be indicated, according Imaging department at 510-428-3542. Northern California to make to Children’s Director of Neonatology Art Contact: Erin Corbett, RN, PNP sure infants with prenatally D’Harlingue, MD. Dr. D’Harlingue heads Phone: 510-428-3156 diagnosed conditions get Children’s Fetal Medicine Program which Email: [email protected] the best possible care during provides rapid diagnosis of pregnancy, delivery, the abnormalities and cares for the fetus newborn period, and beyond. before birth and management of By coordinating prenatal abnormalities after birth by a team of consultation and multi- pediatric specialists. disciplinary planning, we work “An obstetrician or perinatologist to ensure that infants get the may detect a potential birth defect care they need, and parents with ultrasound, but there may not be know what to expect. enough detail to diff erentiate between conditions that may look alike on a sonogram,” says Dr. D’Harlingue. CONSULTATION & REFERRAL Erin Corbett, RN, PNP “Current data show that the Fetal Medicine Coordinator magnetic fi eld and the radio waves Phone: 510-428-3156 used in fetal MRIs are safe for the Email: [email protected] mother and the unborn baby,” says Pinar Karakas, MD, a board-certifi ed pediatric radiologist at Children’s Hospital who has substantial experience in analyzing fetal MRIs. In addition to Dr. Karakas (right), pediatric radiologists at “Fetal MRIs have been used for more Children’s who are involved in evaluating fetal MRI exams than 15 years without a reported include Taylor Chung, MD, (left) and Ken Martin, MD.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 17 PULMONARY MEDICINE

It’s Not Asthma Cystic Fibrosis Center Helps Mackenzie Live a Healthier Life

“All I want for Christmas is to make the coughing stop.” Four years ago, when Mackenzie Dondanville was 11 years old, she had been coughing a lot for the previous year and a half. Because she was a competitive soccer player, her pediatrician thought her cough and shortness of breath were probably due to exercise-induced asthma or allergies, so he prescribed an inhaler medication that sometimes worked to clear her airways. More often, though, the inhaler didn’t do the job. So one day in December that year, Mackenzie came home from school and announced her Christmas wish to her parents, Traci and Steve Dondanville. “I was so tired of coughing, I just wanted it all to stop,” she says. Realizing their daughter’s condition was more serious than they originally thought, the Dondanvilles took Mackenzie to pediatric pulmonary specialist Karen Hardy, MD, at Children’s Hospital & Research Center Oakland. Dr. Hardy is the medical director of Children’s division of Pulmonary Medicine and its Cystic Fibrosis Center. “I think Dr. Hardy knew from her fi rst look at Mackenzie that she had cystic fi brosis,” mother Traci recalls. “Mackenzie had ‘clubbed’ fi ngers, with the tips of the fi ngers being rounded,” Traci says. “We weren’t aware that clubbed fi ngers were a symptom of cystic fi brosis, but to Dr. Hardy, they were a dead giveaway. Dr. Hardy also asked if Mackenzie sometimes had a salt powder on her skin. I told her that I hadn’t really noticed it, but that our yellow lab and pet rabbit loved to lick Mackenzie’s skin. Dr. Hardy explained that pets can be attracted to the salty taste of a cystic fi brosis patient’s skin. Mackenzie also was very petite for her age – she always ranked in the 10th to 20th percentile, while her brother Austin was always in the 90th percentile.” Cystic fi brosis (CF) is an inherited disease that causes the body to produce abnormally thick and sticky mucus. The mucus builds up in the lungs, resulting in frequent serious lung infections. The mucus also may cause scarring and cyst formation in the pancreas—an organ that helps break down and absorb food—which can result in serious digestive

18 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org PULMONARY MEDICINE

problems and malnutrition. mutations of cystic fi brosis genes, and the Traci speculates that being athletic may People with cystic fi brosis have inherited severity of symptoms depends partly on have helped her daughter cope with the two defective CF genes, one from each the types of gene mutations the person has. disease, but it also may have been why her parent. The disease affects at least 30,000 In Mackenzie’s case, she did have severe cystic fi brosis wasn’t diagnosed earlier. “Her children and adults in the United States. mutations on both CF genes that cause athleticism also gave her the strength to Approximately 10 million more Americans pancreatic insuffi ciency and lung disease.” fi ght the disease once she was diagnosed,” carry one defective CF gene but do not have Getting the diagnosis of cystic fi brosis Traci says. “She was in the hospital for 16 any symptoms, which was the case with and being hospitalized was overwhelming days, on IV fl uids and cystic fi brosis drugs. Mackenzie’s parents. at fi rst, Mackenzie admits. “I had never She also was undergoing respiratory therapy “Since 2007, babies in the U.S. have been in a hospital before,” she says. “I treatments four times a day. Her CF team been screened for cystic fi brosis at birth,” had never even been taken to the ER for also included a social worker and dietitian. Dr. Hardy says. “Since Mackenzie was a sports injury. I had no idea what cystic Her lung function went from the 40s to born before 2007, she wasn’t diagnosed fi brosis was, and I didn’t realize it could be the 90s, and she gained weight thanks until after she developed serious symptoms. something so serious—until I saw my mom to enhanced nutrition and pancreatic Asthma is a common misdiagnosis for cry. Dr. Hardy seemed really nice, though, enzymes.” cystic fi brosis, so any young patient who and she completely explained everything. It Dr. Hardy notes that Mackenzie has been diagnosed with asthma or another was the fi rst time a doctor talked directly to improved dramatically with her treatments, respiratory problem and isn’t improving me, rather than asking my mom questions but she also suffers several complications with treatment should be evaluated by a about me. It made me feel more in-the-loop due to the late diagnosis. pulmonologist.” to have Dr. Hardy talk directly to me.” “Mackenzie has bronchiectasis, which is After examining Mackenzie, Dr. Hardy ordered lung-function tests and an X-ray. Mackenzie’s lung-function scores were in the low 40s, and the X-ray was “I think Dr. Hardy knew grossly abnormal, showing from her fi rst look at classical signs of the disease. Dr. Mackenzie that she had Hardy told the parents that she believed Mackenzie had cystic cystic fi brosis,” mother fi brosis. Traci recalls. “That day, we thought we would just be learning what Mackenzie’s allergies were,” father Steve says. “It was scary to hear that she might have cystic fi brosis. We had to sort through what that might mean.” Mackenzie was admitted to the hospital the next day, and a few days later underwent a “sweat test” to measure the amount of chloride (a component of salt) in her sweat. A high level of chloride can be an indication of cystic fi brosis. “Mackenzie did have a high chloride level, confi rming the diagnosis, so we performed genetic testing to fi nd out which gene mutation was the cause,” Dr. Hardy explains. “There Mackenzie has her lungs checked at Children’s Walnut Creek Campus. The measuring device is easily connected to a are more than 1,800 different laptop, and she and Dr. Hardy (right) can watch the results together.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 19 PULMONARY MEDICINE

Children’s Cystic Fibrosis Center was awarded the Cystic Fibrosis Foundation’s 2012 Quality Care Award. This prestigious award recognizes cystic fi brosis centers committed to improving the quality of patient care and providing better health outcomes for people with the life-threatening genetic disease. Children’s was one of four centers in the country to receive the award; 22 of the 117 centers in the country were reviewed in this award cycle. Mackenzie’s clubbed fingers were one of the telltale signs of cystic fibrosis.

an abnormal dilation of the lungs’ airways snap back, making it hard to clear from the we can provide most of her care at home caused by mucus blockage,” says Dr. Hardy. airways. The DNase chops the DNA into when she does get sick,” he adds. “Plus, “That makes it harder for her to clear tiny pieces, liquefying the mucus. Mackenzie now gets a lot of her follow-up mucus secretions, and she tends to get lung “Mackenzie also takes pancreatic care at Children’s Specialty Care Center infections more easily. She also was not enzymes with every meal or snack, as well near our home in Walnut Creek. Dr. Hardy growing well because of a lack of pancreatic as daily vitamin supplements, especially the is at the clinic there every other week, and enzymes, and she had chronic vitamin fat-soluble vitamins A, D, E, and K,” Dr. we can do simple tests and exams there. It defi ciencies.” Hardy continues. “She takes an antibiotic, is awesome to have that facility so close to Dealing with Mackenzie’s cystic fi brosis azithromycin, three days a week to help home.” has meant making adjustments for the prevent infections, and it also acts as an Because cystic fi brosis is a “hidden” entire family. “When Mackenzie was in anti-infl ammatory. In addition, there is an disease that doesn’t present many outward the hospital, we always made sure someone oral medication, Ivacaftor, that has shown symptoms, people often don’t realize was with her,” Steve says. “It helped that promise for fi xing the defective CF protein Mackenzie has a serious disease. And that Traci and I are both self-employed, so we at the surface of the cells to move fl uid suits her just fi ne. could take turns at the hospital. We also and chloride properly, which hydrates the “The great thing about Mackenzie is got a tremendous amount of support from airway surface to thin the thick, sticky that she hasn’t let the disease defi ne her,” family, friends, and neighbors. After she got mucus so it is easier to cough out. says Traci. “She has frustrations at times, out of the hospital, we had to go through “There is no gene treatment for cystic but Dr. Hardy agrees with us that it’s a learning process in how to cope with her fi brosis yet, but there are research projects important to let her be as ‘normal’ a kid as cystic fi brosis at home, and we had to fi gure in early phases,” Dr. Hardy adds. “Exciting possible. She looks like an average 15-year- out how to maintain some sort of normal new research is just starting on a small old. You’d never know she has a chronic routine.” molecule to correct the most common disease, and now she’s at a point where she Mackenzie’s new “normal” routine genetic defect that causes CF. Phase I and doesn’t tell people she has cystic fi brosis.” involves getting up every morning at 6 a.m. II trials were promising, and our Cystic Having just fi nished her freshman to spend 30 to 45 minutes doing airway Fibrosis Center at Children’s will be year at Carondolet High School in clearance treatments with a “percussion part of international Phase III trials. We Concord, Mackenzie is continuing her vest” that helps loosen and get rid of mucus don’t know yet, but Mackenzie might be athletic pursuits, but her favorite sport in her lungs. She repeats that process again considered a candidate for these trials.” is now volleyball, rather than soccer. “I in the afternoon or evening—or more Taking all her medications has become love volleyball,” she emphasizes. “I’m not often if she’s not doing well. She also uses a routine by now, Mackenzie says. “My sure I’m good enough to play in college, various inhaled medications—including parents nag me all the time, asking if I’ve but I would love to play as long as I can.” a bronchodilator (Albuterol) that relaxes taken my pills. I answer ‘Of course,’ with Steve adds, “We believe Mackenzie can do muscles in the airways and increases airfl ow as much ‘attitude’ anything she wants to do.” to the lungs, as well as a concentrated saline as possible,” she solution to make it easier to cough out chuckles. mucus. Steve says that “We believe Mackenzie can d “Another inhaled medication, an Mackenzie has had enzyme called DNase, helps to break down several infections anything she wants to do.” the DNA that makes the mucus so thick and has been on —Steve, Mackenzie’s da and sticky,” Dr. Hardy says. “DNA is a various antibiotics highly coiled substance and is released into since her diagnosis. the mucus when white blood cells die. It is “We’re fortunate, like a Slinky, and, when stretched, tends to though, that now

20 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org KEEPING SAFE FROM INJURY Hot Weather Danger: Open windows are serious risks for children

Did you know? Falls are the leading cause of non-fatal injuries for all children ages 0 to 19. Every day, approximately 8,000 children are treated in U.S. emergency rooms for fall-related injuries. This adds up to almost 2.8 million children each year. Source: CDC

• Children fall from windows, down stairs, off furniture, from bikes, while skating, and off outdoor play equipment. • Each year, more than 200,000 children are injured on America’s playgrounds; a child is injured every two and a half minutes. Most playground injuries relate to age appropriateness and involve children younger than 5 years playing on equipment designed for children who are 5 or older. Prevent window falls! • Install window guards in bedrooms and other rooms where children play. You may also consider window stops, which allow windows to open only up to 4 inches. • Children can fi t through windows open as little as 5 inches. Screens will not protect your child from falling! • When possible, open windows from the top, not the bottom. • Keep furniture away from windows to discourage climbing.

The Emergency Department and Trauma It’s estimated that 90 percent of accidental Kohl’s Injury Prevention Program Center at Children’s Hospital & Research injuries can be avoided. Unintentional injuries In partnership with Kohl’s Cares, the Children Center Oakland are here to help if your child is are the leading cause of death among children Hospital Kohl’s Injury Prevention Program injured—but we’d rather help prevent the injury 14 years of age or younger. Each year, more provides safety education for patients, in the fi rst place. Through its Safety and Child than 5,600 children in this age range die in the children, and families. Health Advocacy eff orts, Children’s Hospital United States, and more than 120,000 become seeks to eliminate unintentional childhood disabled from unintentional injuries. injuries and keep children safe and healthy.

Check out these two ways to get safety information courtesy of Children’s Hospital Kohl’s Injury Prevention Program Watch this! www.preventing Actively supervise: Keep your eyes on your child and childrens have him within arm’s reach when around water! Health and TEXT OUCH .org safety tips injuries for children TO 30644 Children’s Hospital Oakland Kohl’s Injury Prevention Program

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 21 BUILDING PROJECT

Honoring the past, looking to the future

Over the past 100 years, the neighborhood around Children’s Oakland has dramatically changed. The hospital has grown over time to accommodate technological advances and patient needs. The current vision for the modernized Children’s Hospital is the result of safety improvements required by the state and the desire for our buildings to refl ect the quality of our care, improve the patient and family experience, and provide our neighborhood with an architecturally beautiful structure of which to be proud.

2013

CHILDREN’S OAKLAND MODERNIZATION PROJECT

ebuilding and modernizing our medical facilities will preserve our 1970s Rcommunity’s pediatric healthcare services. Children’s Hospital & Research Center Oakland is Northern California’s OUR PROCESS only independent not-for-profi t regional medical center for children. We are the only designated Level 1 pediatric trauma center with the Engaging our community in the planning process is one of our largest pediatric inpatient critical care unit in Northern California. Master Plan’s guiding principles. By involving a full spectrum Children’s Oakland has 190 licensed beds, 201 hospital-based of the hospital’s extended circle—including neighbors, families patients, physicians, staff , donors, and local community leader physicians in 30 specialties, more than 2,700 employees, and an in our planning process, a collaborative blend of voices emerg annual operating budget of more than $350 million. to ensure our future hospital meets the collective vision. For us to continue to serve our region’s current and future healthcare Children’s Oakland held a series of neighborhood meetings in needs, Children’s Oakland must rebuild and modernize facilities March and April 2012 to introduce the concept of our Master to meet new seismic safety standards. The Children’s Hospital & Plan to interested community members. Then, in July 2012, the Research Center Oakland Modernization Project will address capacity hospital and design team created a milestone event, known as shortages and advances in modern medicine. Upgraded facilities 100 Voices: Creating a Vision, to capture ideas for the future o will accommodate new medical technologies and the new hospital Children’s Oakland and to fuse those ideas into a synthesis of standard of single-patient rooms that ensures patient and family concepts that will be echoed throughout the design of the new privacy, patient safety, and comfort. hospital campus.

We want to minimize disruption to our neighbors during this process. In the months ahead, Children’s Oakland will continue to seek community input as it develops the best way to design and This means maximizing the use of our existing land and buildings to build seismically safe, modern facilities while addressing the minimize neighborhood impacts. We aim to keep the height of any community’s needs and mitigating potential impacts. new buildings consistent with the height of our existing facilities. A major emphasis will also be to retrofi t and modernize existing spaces For more information about the project or to sign up for and buildings to minimize the need for new construction. updates, please visit us at www.CHOnext100.org.

22 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org BUILDING PROJECT

NEIGHBORHOOD MEETING SUMMARY

At the community meeting on March 14, 2013, Children’s process. We off er a free shuttle service between the hospital Oakland shared three site alternatives and renderings for and the MacArthur BART station, and we have bicycle racks the location of the new Outpatient Center that is planned in a secured area of the parking structure that both visitors to be built during Phase One of the Modernization Project. and staff can use. Neighbors preferred the “West on 52nd Option” because the building is situated away from the neighborhood and would The hospital plans to fi le a draft Environmental Impact be least likely to cast shadows upon the houses from that Report (EIR) later this year and gain approval for the location (see illustration below). fi nalized plans in 2015. We will continue meeting with the community and incorporating feedback into our Master Plan Parking remains the biggest voiced concern about the throughout this process. Modernization Project. While we are planning to add parking spaces in our updated hospital design, Children’s Oakland encourages patients, visitors, and employees to take public transportation and will continue to make public For more detailed information about th transportation a priority during and beyond our construction Modernization Project, please visit: www.CHOnext100.org

Option preferred by hospital and neighborhood.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 23 FOOD CORNER What’s for dinner homemade gnocc

Haven Restaurant’s Executive Chef Kim Alter shares her culinary talents with Akhil

When we found out that Kim Alter, Haven Akhil Kim Alter wanted to Located in Oakland’s Jack London Square, Akhil, age 9, is one amazing kid. HandPrints Haven is the third restaurant from the Daniel found out about his passion for food (rumo partner with Children’s Patterson Group. Serving new Californian has it he can whip up dinner with anything Hospital in some way, we cuisine from Executive Chef Kim Alter, the you have in your pantry) and thought, jumped at the chance. menu features craveable, technique-driven “Let’s get him to the kitchen!” Luckily, food, including whole animal and vegetable Kim Alter graciously volunteered to give We paired her with preparations, shareable plates, and sweets. him a personal cooking lesson at Haven. budding chef Akhil Chef Kim Alter was nominated for Food & Says Akhil, “It was one of the best days of Wine’s 2013 The People’s Best New Chef. Chef my life!” for a night of learning, Kim is the only chef in Oakland to be nominated Read Akhil’s food blog: laughing, and a meal out of 10 statewide and 100 nationwide chefs, http://akhilsspicekitchen.blogspot.com/ we’ll never forget. and she is one of only 10 women selected.

24 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org FOOD CORNER

making the gnocchi

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Secret revealed: Kim pushes the baked 1. Bake the potatoes at 350 degrees until potato through a fi ne mesh sieve. This cooked through (approximately 1 hour). makes her gnocchi extra light. 2. Peel the potatoes. 3. Run the potatoes through a food mill or push through a colander using the back of a large spoon onto a clean surface. 4. Cut in the fl our and egg using a pastry scraper or spatula. 5. Gently work the dough until it comes together.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 25 FOOD CORNER 6. Cut off about 1 cup of the mixture and roll it into a skinny log, a hal inch in diameter. Cut o small pieces half an inc long. 7. Cook in salted boiling water. Allow gnocchi t rise to the surface and cook for 1 minute. Drai 6 7 fi nishing it off

Mince green Put green Top with Garnish garlic into garlic, olive fresh ricotta. with edible tiny pieces. oil, and salt in fl owers. a pot. Cook on low until the garlic is soft and translucent.

26 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org FOOD CORNER POTATO GNOCCHI

1 pound of russet potato DIRECTIONS 1 cup all purpose fl our 1. Bake the potatoes at 350 degrees until cooked through (approximately 1 hour). 1 egg 2. Run the potatoes through a food mill, or push through a colander using the back of a large spoon onto a clean surface. 1 teaspoon salt 3. Cut in the fl our, egg, and salt using a pastry scraper or spatula. 4. Gently work the dough until it comes together.* 5. Cut off a cup of the mixture and roll it into a skinny log, half an inch in diameter. 6. Cut off small pieces half an inch long. 7. Cook in salted boiling water that’s as salty as seawater. This is where the gnocchi will pick up all necessary seasoning. 8. Allow gnocchi to rise to the surface and cook for 1 minute. 9. Shock in an ice bath in a strainer. *Pro tip: Using your hands and the 10. After the gnocchi have cooled, remove the ice bath and coat gnocchi pastry scraper, gather the dough with olive oil. into a ball and begin folding it. Fol in more fl our for the fi rst couple of folds, and turn the dough over HOMEMADE RICOTTA 8-10 times total. The goal is to incorporate the fl our as thoroughly as possible without working the 1 gallon milk DIRECTIONS dough too much. 1 quart cream 1. Combine all ingredients in a large pot and place on the stove. 1 quart buttermilk 2. Boil until you see the dairy break. 3. Take the pot off the heat. 4 teaspoons kosher salt 4. Wrap a strainer in cheesecloth. 5. Pour the ingredients into the cheesecloth strainer. 6. Let the curds sit for 4 hours. 7. You can keep the strained liquid, called whey, for other uses.

GREEN GARLIC SAUCE

1 bunch green garlic (can DIRECTIONS substitute leeks, chives, or 1. Clean the green garlic and mince fi nely. green onions) 2. Place all the ingredients in a medium size pot. 1/2 cup olive oil 3. Cook on low heat until the garlic is soft and translucent. Salt to taste 4. Adjust your seasoning. 5. Coat the gnocchi with the green garlic sauce and top it with the fresh ricotta. Akhil and his mom Srija at Haven

Haven Restaurant 44 Webster Street, Oakland, Calif. • 510-663-4440 • www.havenoakland.com

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 27 GIVING BACK 4th Annual 1 Notes & Words Writers and Musicians Take the Stage for Children’s Hospital

More than 1,000 people fi lled Oakland’s historic Fox Theater on May 18 for the fourth annual Notes & Words. The wildly successful event featured a lively 5 mix of readings and performances by Billy Collins; Kelly Corrigan; G. Love & Special Sauce; Mary Roach; LaToya London; Lauren Graham; Goodnight, Texas; and Oakland School for the Arts Vocal Rush. Thank you to all who attended, supported, and sponsored this special benefi t for Children’s Hospital Oakland.

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28 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org 4 GIVING BACK 2

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THE SHOW (1) Oakland’s own LaToya London opened the event with I Can Fly; (2) Parenthood actress Lauren Graham read from her new novel, Someday, Someday, Maybe; (3) Former U.S. Poet Laureate Billy Collins received a standing ovation from the packed house; (4) Best-selling popular science author Mary Roach entertained the crowd with her laugh-out-loud humor; (5) Goodnight, Texas band members brought their folksy Americana tunes to the stage; (6) Notes & Words co- organizers Melissa Williams, Kelly Corrigan, and Kristina Smith; (7) Garrett Dutton and his Philadelphia trio G. Love & Special Sauce headlined with their fresh, hip hop blues; (8) Superstars from Oakland School for the Arts Vocal Rush.

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CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 29 GIVING BACK

Skateboarding and Music ass a Positive Force for Change ast Bay music giants Green Day have joined forces Ewith REAL Skateboards, one of the biggest board companies in the U.S., to benefi t Children’s Hospital Oakland. Actions REALized and Green Day collaborated on limited-edition skate decks that feature graphics from the band’s ¡Uno!, ¡Dos!, ¡Tré! album trilogy. The project also included Children’s kids with a special visit to the hospital from REAL pro-skaters and a backstage VIP experience at Green Day’s recent sold-out show at the Berkeley Greek Theater. “This is a great collaboration that involves family, friendship, and brave young people,” said the band’s lead singer Billie Joe Armstrong. “Loud music and skateboarding are a surefi re way to put some smiles on deserving kids’ faces!”

Kiewit Charity Golf or more than a decade, Kiewit FInfrastructure West Co. has generously Classic Raises Over raised funds for vital services at Children’s Hospital Oakland. The company’s 2013 Charity $81,000 for Children’s Golf Tournament, held at Napa’s Silverado Hospital Oakland Golf and Country Club on May 17-18, raised over $81,000, bringing their total support for Children’s to over a quarter- million dollars. Veronica Villa, wife of Kiewit’s Northern California District Manager Chris Villa, proudly refl ected on the success of this annual charity event. “The fi rst year we did this, we raised $3,000,” she shared. “It’s hard to believe how big it has grown.” We are extremely grateful to everyone at Kiewit for their ongoing support of Children’s.

30 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org GIVING BACK

Rite Aid Raises $146,081 Through Iconic Balloon Sales

eam members from Rite Aid’s Walnut TCreek store were recently recognized for their generous fundraising eff orts through the Children’s Miracle Network’s iconic balloon sales campaign. The store came in as one of the top fi ve fundraisers in 2012, joining together with the company’s 71 Bay Area locations to raise $146,081 in support of Children’s Oakland. Since 1994, Rite Aid associates, suppliers, and customers have raised and donated more than $56 million for Children’s Miracle Network hospitals, making Rite Aid the organization’s sixth- largest sponsor. Thank you, Rite Aid, for your phenomenal ongoing support.

For the different ways you can give to Children’s, go to www.chofoundation.org and click on the “Giving to Children’s” tab at the top of the page.

Building a Legacy Through Roselinde Charitable Gift Annuities

The act of giving is nothing new for guarantee fi xed income for life. By Walnut Creek resident Roselinde Russell. supporting the Foundation through a She has been a longtime supporter CGA, Roselinde received an immediate of several charities, but “loves the tax deduction, and, when the annuity good work being done at Children’s.” matures, the remainder will be used to Roselinde has said she is considering help children in the future. a bequest gift in the future, but really wanted to do something today. She “The CGA has actually increased my decided to establish a Charitable retirement income and allowed me to Gift Annuity (CGA) to deepen her make a real commitment to Children’s commitment to the organization and Hospital,” Roselinde says.

For more information, email your questions to [email protected], or call Kevin Hughes at 510-428-3860. All inquiries are confi dential, and we are ready to be of service to you and your family.

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 31 Children’s Hospital & Research Center Oakland 747 52nd St. Oakland, CA 94609-1809

CHILDREN’S HOSPITAL OAKLAND SPORTS MEDICINE CENTER FOR YOUNG ATHLETES ATHLETE DEVELOPMENT PROGRAM Contact Daniel Kamenetzky, 510-428-3558 or email [email protected]

Program outcomes: Program schedule: • Enhanced safety for young athletes We off er a complimentary 20-minute consultation about how the • Enhanced technique and athletic effi ciency program can optimize your training program. The proceeding • Enhanced sports training design and implementation athlete evaluation lasts approximately 3 hours. After the evaluation, • Objective tools for coaches to design training and game implementation of a proposed training program can begin. strategies

Video analysis Contact: Daniel Kamenetzky feedback is tailored 510-428-3558 • [email protected]

specificallypfaytahp to each INITIAL EVALUATION EVALUATION AFTER TRAINING

athletett’s necessary First contact in front of the center First contact at the same level of core sskillskills of gravity the center of gravity

Each athlete can obtain copies of their recordings

This program is intended for: Athletes • Individual/Team and Conditioning Coaches • League Managers and Sports Directors • Physical Therapists • Physicians