a publication of children’s hospital & research …...walnut creek campus 2401 shadelands dr....

HANDPRINTSCHILDREN’S

A PUBLICATION OF CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND

What’s for dinner?

HOT WEATHER DANGEROpen windows are a serious risk for children

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

SUMMER 2013childrenshospitaloakland.org

See more reviews at: http://bitly.com/YelpChildrensWC

Children’s Walnut Creek Campus2401 Shadelands Dr.Walnut Creek

Ask your child’s pediatrician for a referral

Appointments: 925-979-4000

See what you’ve been missing: http://bitly.com/Shadelands

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

Our pediatric imaging experts use radiation levels safe for even the youngest patients.

We have the only Child Life Specialist in Contra Costa County who helps emotionally prepare children for surgical or diagnostic procedures.

diagnostic diagnostic imagingimaging

clinics• 15 Exam Rooms, plus a Cast Room• Lab Draw• Pediatric Specialists on site:

» Dental » Endocrinology » ENT » Nephrology/Urology » Neurosurgery » Nutrition » Occupational Therapy » Orthopedics » Plastic & Hand Surgery » Psychiatry » Pulmonary Medicine » Urology

outpatient outpatient surgerysurgerySame-day surgery is available for:• Audiology• Dentistry• Gastroenterology• General Surgery• Orthopedics• Otolaryngology (ENT)• Ophthalmology• Plastic & Hand

Surgery• Rehabilitation• Urology

If I could (give) more stars I would. This place was amazing. My 7yo had a procedure last week. The people could not have been nicer or more professional. The staff was AMAZING. Everything about this place caters to kids. They made my wife and I feel informed, comfortable and that my son was in the best hands possible. If you ever have to do any procedure on a child this place has NO equal.— John B., Danville, CA

My daughter had a procedure here under general anesthesia and the staff was wonderful! They really put us at ease, explained every step very clearly, and showed that they cared. We really appreciated the kindness they showed us.— Laura K., San Ramon, CA

I love this facility and the care my daughter received. She had a persistent problem that never seemed to be getting better. Other facilities passed it off but here, they didn’t dismiss what was going on and did everything possible to get to the bottom of it.— Jackie B., Danville, CA

Children’s Walnut Creek Campus rates 5 stars on Yelp!

2401 SHADELANDS DR., WALNUT CREEK

James Keefe, Chair

Melba Muscarolas, Vice Chair

Arthur D’Harlingue, MD, Treasurer

Michael LeNoir, MD, SecretaryRena BrantleyThomas V. Bret, Esq.Jeff rey CheungMatthew Cox

Harold DavisJanet King, PhDWatson Laetsch, PhDLouis LavigneJames Levine

Leslie LittletonBertram Lubin, MDBetty Jo OlsonHitendra Patel, MDEdward Penhoet, PhD

Ori SassonShahan SoghikianHarold C. Warner, PhDRichard Whitley, MDJamie Bertasi Zerber

CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND BOARD OF DIRECTORS

Table of Contents

5 LETTER FROM THE PRESIDENT & CEO

6 PERSPECTIVE Family Leave

A pediatrician’s thoughts on California’s family leave laws.

ASK AN EXPERTChildren’s pediatric emergency medicine specialist explains the best way to save your child’s permanent tooth if it gets knocked out.

7 WHAT’S NEWInsulliance, a new mentoring program for type 1 diabetes patients, launches at Children’s Hospital.

8 THINGS TO DOInfant and child CPR certifi cation courses in Walnut Creek

Third Annual “What Sickle Cell Means to Me” Art Contest

Two-Week Sports Speed Camp hosted by Children’s Hospital Oakland Sports Medicine Center for Young Athletes

9 KIDS CORNERLast issue’s puzzle solution.

Try your hand at logic puzzle #7.

10 RESEARCH UPDATEChildren’s fi rst fellow in the Pediatric Surgery’s Clinical Research Program makes remarkable discovery. Written by Lisabeth Kirk.

Help stop heart disease with CHORI’s Family Heart and Nutrition Center. Written by Patty Siri.

12 MEDICAL EXPERTS Longtime NICU Nursing Manager

Susie Adams to retire. Written by Susie Caragol.

To Russia, with Love: Interesting centennial fact

Creating a safer hospital environment for the future. Written by Susie Caragol.

14 FETAL MEDICINE How to contact the Fetal Medicine

Team at Children’s Hospital

Fetal MRI: a valuable tool for detecting fetal abnomalies

21 KEEPING SAFE FROM INJURYHot Weather DangerOpen windows are serious risks for children. Written by Children’s Trauma Department.

22 BUILDING PROJECTHonoring the past; looking to the future.

24 FOOD CORNERWhat’s for Dinner? Homemade GnocchiHaven Restaurant’s Executive Chef Kim Alter shares her culinary talents with Akhil.

28 GIVING BACKWriters and musicians take the stage for Children’s Hospital at the Fourth Annual Notes & Words

Skateboarding and music as a positive force for change

Kiewit Charity Golf Classic raises over $81,000 for Children’s Hospital Oakland

Rite Aid raises $146,081 through iconic balloon sales

Building a legacy through charitable gift annuities

14 Detecting Mili’s Heart Defect Before BirthFetal diagnosis lets doctors coordinate lifesaving eff orts. Written by Susie Caragol.

18 It’s Not AsthmaCystic Fibrosis Center helps Mackenzielive a healthier life. Written by Susie Caragol.

4 CHILDREN’S HANDPRINTS SUMMER 2013 • www.childrenshospitaloakland.org

Children’s HandPrints is a publication of Children’s Hospital & Research Center Oakland, 747 52nd Street, Oakland, CA 94609; 510-428-3000.

Bertram Lubin, MDPresident and Chief Executive Offi cer

Marketing Communications DepartmentCynthia ChiarappaVice President, Strategy

Tina AmeyAdministrative Assistant

Debbie DareCreative Director

Erin GoldsmithMedia Relations Manager

Kevin KimbroughMarketing Manager

Michele RepineInternet Marketing Director

Erika SandstromSenior Graphic Designer

Julie FullerOffi ce Clerk

Contributing WritersKim AlterSusie CaragolCatherine Claus, MDChildren’s Trauma DepartmentJackie KershLisabeth KirkPatty Siri

Contributing PhotographerAlain 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 issues of this publication, please email to [email protected] your name and address as they appear on the mailing panel.

If you’d like to write to the editor of Children’s HandPrints, please send an email to [email protected].

HANDPRINTSCHILDREN’S

www.childrenshospitaloakland.org

the east bay’s premier golf tournament

SCORE FORE KIDS 2013MON., SEPT. 16, 2013Claremont Country Club, Oakland, CA

To reserve your foursome or become a sponsor, contact Angela Rundles at [email protected], or call 925-370-7496.

www.scoreforekids.com

8th Annual San Francisco Bay Open Water Swim

SWIM TO FIGHT CANCERSAT., OCT. 5, 2013

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

Benefi ting

, ,Money raised at the 8th Annual San Francisco Bay Open Water Swim stays in our community, supporting Bay Area pediatric cancer research and treatment.

and

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:• 83% of our readers say they have discussed what

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.

If you’d like to send comments to the HandPrints editor, you can send an email to [email protected].

Cheers,

Bertram Lubin, MDChildren’s Hospital & Research Center OaklandPresident & Chief Executive Offi cer

CHILDREN’S HANDPRINTS SUMMER 2013 • Donate at www.childrenshospitaloakland.org 5

A WORD FROM

DR. LUBINPRESIDENT & CEOPRESIDENT & CEO

To see back issues, go to www.childrenshospitaloakland.org

People all over the Bay Area are reading HandPrints!


PERSPECTIVE

The mother of my newborn patient, herself only 17, told me

she was returning to work six days after giving birth. As I raise two young children of my own while training as a pediatrician at Children’s Hospital Oakland, her story gives me pause.

With new healthcare policies coming, it may be time to re-think parental leave and its role in preventative medicine. We are one of four countries that don’t guarantee paid time off to new parents; Liberia, Papua New Guinea, and Swaziland are the others. A 1993 law allows 12 weeks of leave to workers but only in companies of 50 or more, without job protection or paid time off .

California became the fi rst state to enact paid family leave in 2002, but the benefi ts are limited. Employees must have contributed to State Disability Insurance. Paid benefi ts last for six weeks over 12 months to care for a child or a seriously ill family member. The ceiling, however, is 55 percent of earnings, or a maximum of about

$1000 per week. There are a handful of other states with similar benefi ts.

Still, our state eff orts fall short. Gaps in benefi ts can be complicated and diffi cult to navigate. A study in 2007 showed that only 28 percent of Californians were aware of the program. We can do better.

Babies with mothers who return to work within 12 weeks are less likely to be breastfed or up-to-date on immunizations, and more likely to exhibit behavior problems. Companies that off er parental leave have a higher employee retention rate and minimize costly turnover.

This is a compelling public health issue with considerable fi nancial considerations. I believe current policies are myopic. Improvements need to include adequate wage compensation, job protection, and extended leave.

My patient and her mother are up against the odds: We could do a better job at supporting children’s health and well-being by improving care of their working parents.

Family Leave Even in progressive California family leave laws are short-sighted and out-of-date.

Catherine Claus, MD, is a medical resident at Children’s Hospital & Research Center Oakland.

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

The “Perspectives” radio series features daily listener commentaries since 1999. To hear Dr. Claus’s commentary, go to http://bitly.com/cateclaus.

ASK AN

EXPERT

Howto

save a

permanent

tooth

If you have a question you’d like to ask, email [email protected].

“One of my kid’s friends had his permanent tooth knocked out. What should I do if that happens to my kid?”

There are a number of steps you can take to help successfully save the tooth. Time is of the essence, and you are more likely to save the tooth if you begin treatment within 60 minutes of the injury.

Step 1: Find the tooth.

Step 2: Rinse it gently under running water, but do not scrub the tooth.

Step 3: Try to replace it in its socket and apply gentle pressure.

Step 4: If you can’t replace it, put it in a glass of milk. If milk is not available, you may use saliva or saline as an alternative.

Step 5: Immediately go to your dentist or nearest emergency room, where the tooth will be re-implanted and splinted in place.

—Karim Mansour, MD, Pediatric Emergency Medicine Specialist

Watch the video: http://bit.ly/CHO-lost-tooth

FOOD CORNER

WHAT’S

NEW


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

cool peeps!

Children’s Hospital Oakland’s Endocrinology Department and a

new diabetes organization called Beta Connect have, together, launched a mentoring program called Insulliance for patients who are newly diagnosed, who are struggling to manage their diabetes, or who have been admitted to Children’s for a type 1 diabetes-related concern. The mentors provide emotional support and helpful information to patients living with type 1 diabetes and their families. They hope to improve patients’ diabetes management through self-empowerment. A goal of the Insulliance program is to help normalize the condition—to show patients that their hardships are shared by others. In addition to providing peer support, Insulliance mentors provide patients with a list of resources such as smartphone 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 is a promising initiative, and Children’s Hospital Oakland is leading the movement.

Back row (l-r): Emily Roth, Emily Swide, Vanessa Hayden, Katie Craft (Child Life Specialist), Amy Warner (Social Worker), Trevor Thompson, Lucas Fogarty, Kristin Avicolli (Social Worker), Carrie Stearns. Front row (l-r): Raychel Cooke, Heather Gabel, Sarah Afzal.

“

”

“

”For program questions, please contact the Insulliance founders:Heather Gabel, [email protected] Afzal, [email protected]

My fi rst mentoring experience at Children’s

Hospital was invigorating. I felt like I really

connected with my mentee. I cannot explain

how empowering it is to impact someone’s life

for the positive. Diabetes is not always a walk in

the park, but by mentoring at Children’s, I hope

to remind patients that they are NEVER alone

on this journey and inspire them to live well

with diabetes.

—Emily Swide, Insulliance mentor


3RD ANNUAL “WHAT SICKLE CELL MEANS TO ME” ART CONTESTTo celebrate Sickle Cell Awareness Month in September, anyone age 5 and up is invited to express what sickle cell disease means to them through art in any medium. Select artwork will be displayed at the John “Larry” Valley 103 Heroes Blood Drive on Sept. 21, 2013.*

Art Contest Rules and Regulations• Entries will be judged on originality and creativity.• Entries may not contain any profanity or nudity.• Contest is open to everyone (sickle cell patients and

non-patients) ages 5 and up (categories: ages 5-12; 13-21; 21+).

• 1st place: $500, 2nd place: $250, 3rd place: $100 (in each category).

• All decisions by the judges are fi nal.• All entries are due by Friday, Aug. 30, 2013, 5 p.m.• Winners will be contacted by Sept. 13, 2013.• Each entry must be labeled with contestant’s full

name, phone number, email, and a brief description of artwork submitted.

• Artwork will be returned to the artist following the culmination of contest events.

All digital entries must be submitted to:Fred at [email protected] 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.

THINGS

TO DO

INFANT & CHILD CPR CERTIFICATION COURSESIN WALNUT CREEK

TUES., AUGUST 6, 20136:30–9 P.M.American Heart Association’s Heartsaver® First Aid CPR AED is a classroom-taught, video-based, instructor-led course that teaches critical skills needed to respond to a fi rst aid, choking, or sudden cardiac arrest emergency until help arrives.

Course includes:• Infant, child, and adult CPR and choking training• Hands-on AED training

Upon completion, students receive an American Heart Association Heartsaver CPR and AED course completion card that is valid for two years.

savea life!

Fee: FREE

Register: www.bitly.com/cpr-wc

Location: Children’s Hospital Oakland Walnut Creek Campus, 2401 Shadelands Dr., Walnut Creek

Contact: Kevin Kimbrough, 510-428-3812 or [email protected]

www.childrenshospitaloakland.org

CHILDREN’S HOSPITAL OAKLANDSPORTS MEDICINE CENTER FOR YOUNG ATHLETESTWO-WEEK SPORTS SPEED CAMPAUGUST 5-16, 2013M-F, 2-4 P.M.• Increase your speed, quickness, and agility• Improve your fl exibility so you can run faster• 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, BerkeleyInstructors: Jamie Faison, ATC, CSCS, and Sports Medicine staff RSVP: Sports Medicine Center, 510-428-3558, option 3Space limited to 25 athletes, aged 12-19. Please call to reserve your spot.

Cost per session: $250/athlete

We will give you the training secrets that will make you faster than you’ve ever been before!

PROBLEM: Using only four 9’s, create a math equation that equals 100.

YOUR ANSWER:

LOGIC PUZZLE #7

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 __________________________________________________

CITY _______________________________________________________

STATE _____________________________________________________

ZIP ________________________________________________________

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

ANSWER

Thank you all for your entries!

KIDS CORNER

What numbers go in the blanks?


11 1

1 2 11 3 3 1

1 4 4 11 5 10 1010 10 5 1

6

This is Pascal’s Triangle. There are always 1’s along the sides. To get the other numbers, we add the two numbers that are above. For example, we added 1 + 1 to get the 2 and we added 1 + 3 to get the 4.

Children’s Hospital’s

Whiz KidsLOGIC PUZZLE #6


RESEARCHUPDATE

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

For the past three years, CHORI and Children’s Hospital Oakland have been working with Clinical Scientist

and Pediatric Surgeon Wolfgang Stehr, MD, and CHORI Senior Scientist Frans Kuypers, PhD, to develop a translational research program in the pediatric surgery department at the hospital. Those efforts have culminated with the department hiring its fi rst surgical research fellow.

Robert Bell, MD, a resident in the UCSF East Bay Surgery Program, joined the Children’s Hospital & Research Center Oakland pediatric surgery lab in July 2011. Working under the mentorship of Drs. Stehr and Kuypers, Dr. Bell has been investigating necrotizing enterocolitis (NEC), a common disease in premature babies born as early as 25 or 26 weeks of gestation.

Premature babies of this gestational age weigh as little as 1 pound, as opposed to full-term babies who can weigh anywhere from 6 to 10 pounds. When these premature infants fi rst start eating, their intestines can be too underdeveloped to handle the food. As a result, they develop NEC, and the entire intestinal system begins to fail.

“There is nothing more heartbreaking or more motivating for a pediatric surgeon than coming across one of these children whose entire small bowel has died from this disease. There is nothing you can do but artifi cially feed them until they can have an intestinal transplant or they die,” says Dr. Stehr.

During the course of his fellowship at

Children’s, Dr. Bell developed a clinical project analyzing specimens from premature babies at the hospital for certain factors that might contribute to NEC. He then established an animal model of the disease at CHORI and used it to investigate the role of the stress hormone corticotropin-releasing factor (CRF) in NEC’s development and progression.

“What Dr. Bell found is that inhibiting CRF prevented the animals from developing NEC. The research is truly remarkable and suggests that CRF may be the linchpin manipulating everything that goes on in NEC,” says Dr. Stehr. “While Dr. Kuypers and I provided oversight and laboratory space, Dr. Bell demonstrated incredible initiative. He is a very scientifi cally oriented surgery resident and a very powerful fi rst fellow for our clinical surgery research program.”

Dr. Bell’s discovery received fi rst prize for Best Presentation at the University of California, San Francisco’s Department of Surgery’s 26th Annual Resident Research Symposium, held on April 5, 2013.

“I really appreciate the award,” says Dr. Bell. “It feels great to be recognized. It’s

especially rewarding to represent CHORI, Children’s Hospital Oakland, and the East Bay Surgery Program in front of our

colleagues across the bay, and to give them a small example of the spectacular work being done here in Oakland.”

Drs. Bell and Stehr are continuing to investigate CRF’s subcellular effects in newborns and hope to secure additional funding to fully elucidate the critical role that CRF may play in NEC.

Frans A. Kuypers, PhDSenior Scientist, Children’s Hospital Oakland Research Institute

Dr. Kuypers’s research focuses on membrane biology and hemoglobinopathies. His investigations center on the definition of factors and proteins involved in the red blood cell membrane’s lipid bilayer organization and how they relate to sickle cell disease and thalassemia.

Drs. Stehr and Bell in the NICU.


RESEARCHUPDATE

Help stop heart disease Participate in a food study!

The Cholesterol Research Center, led by Director and Senior Scientist Ronald Krauss, MD, conducts clinical research on cardiovascular disease (CVD) risk

and prevention, spanning childhood through adulthood. The Center is focusing on several different projects, including a collaboration with the Healthy Hearts program and pediatric cardiologists that links research and the medical management of patients with obesity and cardiovascular issues; studies showing that reducing carbohydrate intake benefits the most common blood cholesterol profile related to heart disease risk; and new research studies investigating how different food sources of carbohydrate, fat, and protein can affect risk for heart disease and diabetes.

In 2011, Dr. Krauss and colleagues launched the Family Heart and Nutrition Center (FHNC), which takes an integrated approach to basic and clinical research to prevent cardiovascular disease in all ages. The FHNC was conceived as a means to develop and apply knowledge of genetic and lifestyle influences to improve management of CVD risk for 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 is positioned to become a nationally and internationally recognized center of excellence in the acquisition, implementation, and dissemination of knowledge for reducing the burden of CVD across the full age spectrum and among diverse populations.

The FHNC is an ambitious program, but one that leverages existing clinical and research infrastructures to provide an important service to our community. By developing partnerships with existing providers and creating new evidence-based programs to develop a comprehensive, community-based network of services, the FHNC will become the coordinating body and comprehensive outreach program that is greatly needed to help children and families 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 support the Family Heart & Nutrition Center, contact:Ronald M. Krauss, MDEmail: [email protected]: 510-450-7908

Dietary Research Study #114-Week Study on Diet and

Heart Disease RiskTo be eligible, you must be:• Age 22 years or older• Have a systolic blood pressure <160 and diastolic blood

pressure between 80-95 • Not on certain drugs, including lipid, blood pressure, or

diabetes drugs, or hormones• Able to travel to our clinic in Berkeley

If you complete our study, you will get:• Free meals for 10 weeks of the study• Blood pressure and lab work results• A home blood pressure monitor• $1000 for completing the study

Dietary Research Study #218-Week Study on Dietary Protein

and Heart Disease RiskTo be eligible, you must be:• Age 21 to 65• Able to travel to our clinic in Berkeley

If you complete our study, you will get:• Free food for 14 weeks; eat your own food for 4 weeks• Lab work results• $1200 for completing the study• An optimal 4 weeks of free weight loss counseling after

To fi nd out more about these studies, go to:www.CRCstudy.orgQuestions? Call toll-free, at (866) 513-1118.

Susie Adams, RN, will be sorely missed when she retires

as Nursing Manager of the Newborn Intensive Care Unit (NICU) at Children’s Hospital & Research Center Oakland in September.

“One of Susie’s greatest contributions has been mentoring others,” says Vice President of Patient Care Services and Chief Nursing Executive Nancy Shibata, RN, MSN. “I can’t imagine how many people Susie has helped develop over the years. Her work ethic has inspired other nurses, and sheleaves a legacy for the future with her accomplishments in patient safety and her focused attention on neonatal care. Plus, she acts as if every one of those babies is hers.”

Originally from Maryland, Susie fi nished nursing school there beforeworking as a pediatric nurse in Pennsylvania, Maryland, and Florida. She then earned her pediatric nurse practitioner certifi cate (PNP) at Johns Hopkins. Afterward, she worked as a nurse for economically disadvantaged children in Appalachia. Then, in June 1976, Susie moved to California as staff nurse in the NICU. “I wanted a nursing career that was faster-paced and to go back into a pediatric hospital setting,” she recalls.

Within a short time, Susie became a night nursing supervisor for the entire hospital. In 1979, she was named “acting” nurse manager in the NICU. That job was supposed to last three months, she notes, “but I’ve been here ever since.”

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

Susie Adams, RN (right) with Renda Pennix, RNThey worked together for over 30 years.

MEDICAL EXPERTS

Int� � t� g � nt� iF act

To Russia, with Love“Susie is not afraid to venture into new territory,” says Art D’Harlingue, Director of Children’s Neonatology department of Susie Adams, Children’s NICU Nursing Manager, who is set to retire this fall. “In the early 1990s, we had a medical exchange program for several years with a hospital in St. Petersburg, Russia. They were 25 years behind the times in pediatric medical practice. Susie helped instruct their nurses, modernizing their NICU.”

Susie has fond memories of that experience. “It was a highlight of my career to help improve medical care in an international setting,” she says. “We developed a model NICU there, and we’ve stayed in contact with some nurses, one of whom is now in the U.S. working toward her doctorate in nursing education. So we had a positive impact.”

Children’s also brought Russian children to Oakland—to perform open-heart surgery on Maria Senotova (7) from Leningrad in January 1989 and heart surgery on Maxim Shapiro (6) from Minsk in Feb. 1990. Children’s resident Jo Ann McGowan met Maria’s mother in Leningrad and learned that Soviet doctors were unable

to help the girl due to her small size. The Soviet Union wouldn’t perform surgery with congenital heart abnormalities until the patient weighed 44 pounds. About 50,000 Soviet children with these conditions died before their first birthday. McGowan, with J. Niles Young, MD, Chief of Cardiac Surgery, and Stanley Higashino, MD, Chief of Cardiology, spent a year convincing the Soviet and American bureaucracies to get Maria into the United States.

In June 1989, with the blessing of the Soviet Ministry of Health, a Heart to Heart team—including Drs. Higashino, Christian Hardy, and Gregg Helton—traveled to Moscow to perform more surgeries. In January 1990, a 15-member team went to Leningrad’s Children’s Hospital #1 for two weeks performing 10 surgical procedures and helping to establish the first advanced pediatric cardiac center in the Soviet Union. They brought with them over $500,000 worth of donated medical equipment and supplies. The story was covered by the Oakland Tribune and was entitled, “Mission of Mercy.” CBS’s 60 Minutes accompanied the team to Russia. Leslie Stahl was the correspondent.


Longtime NICU Nursing Manager Susie Adams to Retir


MEDICAL EXPERTS

Children’s Hospital is developing innovative practices and working with

other hospitals to target specifi c hospital-acquired conditions (HACs) and improve patient outcomes.

Most recently, Children’s joined a new collaborative of children’s hospitals focusing on patient safety, including HACs. Originally formed by eight hospitals in Ohio, the Ohio Children’s Hospitals’ Solutions for Patient Safety now includes more than 70 children’s hospitals nationwide.

One especially notable accomplishment in reducing HACs at Children’s is the success in the Newborn Intensive Care Unit (NICU) in preventing central line-associated bloodstream infections. A “central line” is a catheter (tube) that passes through a large vein and ends at or close to the heart. In the NICU, a central line is used to deliver fl uids, nutrients, and medications when a baby has serious health problems that preclude giving medications orally or make oral feedings impossible. A bloodstream infection can result when bacteria or other germs travel down a central line and enter the blood.

According to the Centers for Disease Control and Prevention (CDC), an estimated 41,000 central line-associated bloodstream infections occur in U.S. hospitals each year. The CDC also notes that these infections are much more common among children than adults, and

they represent a signifi cant problem for infants in NICUs who are often premature or already very sick. As of May 17, 2013, the NICU reached an impressive record of 485 days without one of these infections. Only a few years ago, such infections were considered to be practically unavoidable.

“We almost expected infections because of how fragile our little patients are,” says Clinical Nurse Specialist Carolyn Lund, RN, MS.

“We solicited feedback from staff whenever there was an infection,” says pediatric neonatologist Priscilla Joe, MD, the physician leader on the project.

“We went back to the drawing board to determine the cause of each infection, asking ‘Why?’ until we found a solution, which helped develop better precautions.

“We’ve also created a culturally safe environment for staff and parents to stop anyone—including physicians—and ask if they have washed their hands before touching a baby,” she emphasizes. “It all boils down to getting everyone to believe that we can do this.”

“Medical care has become increasingly complex, and we all assumed that complications were inevitable,” says Director of Neonatology Art D’Harlingue, MD. “Now, instead of expecting these infections, we’re working to keep up our record of zero infections. Patient safety is a top priority, and we take it very seriously.”

Creating a Safer Hospital Environment for the Future

associated with intravenous central lines. The NICU has had no central-line infections for more than 15 months. Characteristically, Susie refuses to take all the credit. “This was a quality issue that we devoted a lot of time and energy to improve—it was a complete team effort,” she explains.

Susie’s success in rallying the team stems from her ability to communicate effectively with people at all levels in the hospital, according to NICU Clinical Nurse Specialist Carolyn Lund, RN, MS. “Susie can be calm and diplomatic in diffi cult, complicated situations,” she observes. “She knows everyone, across all disciplines. Plus, she is really, really smart and combines common sense with wisdom and knowledge. That helps her work with doctors, nurses, other staff—and families—to achieve the best patient care.”

Director of Neonatology Art D’Harlingue, MD, who has worked with Susie since 1983, explains that she has many responsibilities, managing approximately 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 these babies is serious, we need to have a sense of humor and enjoy our work, too,” Susie explains. “I like to ease the tension a bit.” She also says her motto is: “ To save time, let’s just assume I know everything.”

“”

Says Susie about her working trip to Russia in the early 1990s (see sidebar story on the left):

The Russians were suspicious of us because nobody there ‘volunteered’ for humanitarian eff orts. We even had a KGB agent who followed us.

NICU baby with a central line


Andrea Jedwab and Adrian Breitfeld are the proud parents of a lively baby girl who fills their life with 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, during the development of the heart.”

Early Detection and Correction Critical to Survival

Most cases of transposition of the great arteries are 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 to try to get more oxygen to the body.

If the defect is not corrected, there is a 50-percent 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.

FETALMEDICINE

Fetal Diagnosis Lets Doctors Coordinate Lifesaving Eff orts

Detecting Mili’s Heart Defect Before Birth


FETALMEDICINE

Children’s Fetal Medicine Center has had an association with Alta Bates Hospital in Berkeley and John Muir Hospital in Walnut Creek for many years. The program is expanding. “Our goal is to provide a fetal medicine program that responds to the needs of families, obstetricians, and perinatologists throughout the East and North Bay,” says Dr. Rosenfeld. “By working closely with families and care providers in complex pregnancies, we can safeguard fetal health while honoring parents’ desires to deliver their babies close to home. We also can provide families and their physicians with appropriate information so they can prepare themselves for what to expect.”

Andrea and Adrian were frightened by the diagnosis of their baby’s heart defect, as any parent would be, but they did appreciate the time they had to prepare.

“I was scared to death,” Adrian admits. “Early on, waiting for the test results was difficult, not knowing what might be wrong. Being surprised by Mili’s

condition at birth would have been even more traumatic, though. Having the advance notice helped a lot; we were well prepared.”

Andrea agrees: “It was definitely scary to get the diagnosis and learn something was wrong with our baby’s heart. Then we had our first follow-up appointment with Dr. Rosenfeld, who explained everything very carefully and clearly. I was grateful to learn about the defect early in my pregnancy so I could be prepared for what would happen. The people at Children’s and my obstetrician at Alta Bates were prepared and knew what to do, too. That wouldn’t have happened if we hadn’t known about the heart defect ahead of time.”

Getting Ready for Mili’s Birth and Surgery

Andrea kept up her regular prenatal exams with her obstetrician and additional appointments with Dr. Rosenfeld, with frequent echocardiograms to monitor the baby’s heart.

Dr. Rosenfeld coordinated the care plan with Medical Director of Cardiology Hitu Patel, MD, and Chief of Pediatric Cardiac Surgery Olaf Reinhartz, MD. Dr. Patel, who specializes in cardiac catheterization procedures, would be responsible for improving and stabilizing the oxygen flow to the baby’s body. Dr. Reinhartz would perform the surgery to correct the transposed arteries.

The Children’s medical team was notified as soon as Andrea went into labor, and baby Mili was transported from Alta Bates to Children’s within hours of her birth. Adrian and his brother went to Children’s to be with Mili while Andrea recovered overnight at Alta Bates.

Going from Blue to PinkThe medical team got to work right

away raising Mili’s blood-oxygen level, which was a dangerously low 60 percent. The doctors used medication to help keep open a small blood vessel near the heart that connects the pulmonary artery

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.”


FETALMEDICINE

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 improvement.”

Mili’s father noticed the difference right away. “The attention and care Mili received from the doctors at Children’s was evident from the get-go,” Adrian says. “Dr. Patel’s optimism helped me relax. I was concerned because when she went in to the catheterization lab, she was blue. When she came out about an hour later, she was pink!”

That first night, Mili needed some assistance with her breathing, and for the following two nights, the staff at Children’s kept a close watch to make

sure she was ready for corrective surgery three days after her birth.

A “Fantastic” SurgeryCorrecting transposition of the

great arteries involves a complex surgical procedure called an “arterial switch.” Mili’s surgeon, Dr. Reinhartz, describes the arterial switch procedure as a “fantastic surgery” that illustrates the advances made in pediatric cardiac surgery.

“Basically, we take the aorta and the pulmonary artery off the places where they connect to the heart and move them to the proper position,” says Dr. Reinhartz. “We also have to switch the smaller coronary arteries that supply blood to the heart muscle itself. This is technically the trickiest part of the surgery because the coronary arteries are much smaller blood vessels that require microsurgical techniques that were not 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,

(above) Howard Rosenfeld, MD, consults with Mili’s parents. (below) A light moment with Hitu Patel, MD.

FETALMEDICINE

and people came out every hour or so to give us updates. We were very happy with all the care we received at Children’s, and we have absolute confidence in the doctors. We were in good hands, and it was wonderful to be at a hospital close to home.”

Mili’s family recently moved again, this time to a larger home in Pleasant Hill, where they will still be close to the expert care they found

at Children’s in Oakland. Mili’s cardiologist, Dr. Rosenfeld, who will continue to follow her case until she reaches age 21, expects her to lead a completely normal life.

“We’ve been blessed that Mili’s surgery was successful and that she recovered so quickly,” says father Adrian. “It’s wonderful to be able to boast that Mili is a beautiful, healthy baby. And she is very, very smart!”

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.


FETAL MEDICINE TEAM AT CHILDREN’S OAKLANDThe Fetal Medicine team at Children’s Hospital Oakland serves as a single point of contact for expectant parents with prenatally diagnosed conditions.

Our team of specialists works with obstetricians, perinatologists, and pediatricians throughout Northern California to make sure infants with prenatally diagnosed conditions get the best possible care during pregnancy, delivery, the newborn period, and beyond. By coordinating prenatal consultation and multi-disciplinary planning, we work to ensure that infants get the care they need, and parents know what to expect.

CONSULTATION & REFERRALErin Corbett, RN, PNPFetal Medicine Coordinator Phone: 510-428-3156 Email: [email protected]

Children’s Hospital & Research Center Oakland currently is the only hospital in the East Bay to off er fetal MRI (magnetic resonance imaging) as a complementary diagnostic imaging tool when suspected fetal anomalies are not well assessed by ultrasound. A proven, well-established diagnostic imaging technique, MRI uses a strong magnetic fi eld and radio waves to obtain pictures of the inside of the body without using radiation.

There are numerous conditions for which fetal MRI imaging may be indicated, according to Children’s Director of Neonatology Art D’Harlingue, MD. Dr. D’Harlingue heads Children’s Fetal Medicine Program which provides rapid diagnosis of abnormalities and cares for the fetus before birth and management of abnormalities after birth by a team of pediatric specialists.

“An obstetrician or perinatologist may detect a potential birth defect with ultrasound, but there may not be enough detail to diff erentiate between conditions that may look alike on a sonogram,” says Dr. D’Harlingue.

“Current data show that the magnetic fi eld and the radio waves used in fetal MRIs are safe for the 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. “Fetal MRIs have been used for more than 15 years without a reported

negative eff ect on the imaged fetuses. Pregnant patients can be accepted to undergo MRI scans at any stage of pregnancy but are preferably performed in the second trimester after 20 weeks of gestation.”

CONSULTATION & REFERRALPatient referrals for fetal MRI should be submitted on Children’s Hospital’s standard referral form and faxed to the Diagnostic Imaging department at 510-428-3542.

Contact: Erin Corbett, RN, PNPPhone: 510-428-3156 Email: [email protected]

FETAL MRI: A VALUABLE TOOL FOR DETECTING FETAL ANOMALIES

In addition to Dr. Karakas (right), pediatric radiologists at Children’s who are involved in evaluating fetal MRI exams include Taylor Chung, MD, (left) and Ken Martin, MD.


“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

PULMONARY M E D I C I N E

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


problems and malnutrition.People with cystic fi brosis have inherited

two defective CF genes, one from each parent. The disease affects at least 30,000 children and adults in the United States. Approximately 10 million more Americans carry one defective CF gene but do not have any symptoms, which was the case with Mackenzie’s parents.

“Since 2007, babies in the U.S. have been screened for cystic fi brosis at birth,” Dr. Hardy says. “Since Mackenzie was born before 2007, she wasn’t diagnosed until after she developed serious symptoms. Asthma is a common misdiagnosis for cystic fi brosis, so any young patient who has been diagnosed with asthma or another respiratory problem and isn’t improving with treatment should be evaluated by a pulmonologist.”

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 grossly abnormal, showing classical signs of the disease. Dr. Hardy told the parents that she believed Mackenzie had cystic fi brosis.

“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 are more than 1,800 different

mutations of cystic fi brosis genes, and the severity of symptoms depends partly on the types of gene mutations the person has. In Mackenzie’s case, she did have severe mutations on both CF genes that cause pancreatic insuffi ciency and lung disease.”

Getting the diagnosis of cystic fi brosis and being hospitalized was overwhelming at fi rst, Mackenzie admits. “I had never been in a hospital before,” she says. “I had never even been taken to the ER for a sports injury. I had no idea what cystic fi brosis was, and I didn’t realize it could be something so serious—until I saw my mom cry. Dr. Hardy seemed really nice, though, and she completely explained everything. It was the fi rst time a doctor talked directly to me, rather than asking my mom questions about me. It made me feel more in-the-loop to have Dr. Hardy talk directly to me.”

Traci speculates that being athletic may have helped her daughter cope with the disease, but it also may have been why her cystic fi brosis wasn’t diagnosed earlier. “Her athleticism also gave her the strength to fi ght the disease once she was diagnosed,” Traci says. “She was in the hospital for 16 days, on IV fl uids and cystic fi brosis drugs. She also was undergoing respiratory therapy treatments four times a day. Her CF team also included a social worker and dietitian. Her lung function went from the 40s to the 90s, and she gained weight thanks to enhanced nutrition and pancreatic enzymes.”

Dr. Hardy notes that Mackenzie improved dramatically with her treatments, but she also suffers several complications due to the late diagnosis.

“Mackenzie has bronchiectasis, which is


Mackenzie has her lungs checked at Children’s Walnut Creek Campus. The measuring device is easily connected to a laptop, and she and Dr. Hardy (right) can watch the results together.

“I think Dr. Hardy knewfrom her fi rst look at Mackenzie that she hadcystic fi brosis,” mother Traci recalls.


an abnormal dilation of the lungs’ airways caused by mucus blockage,” says Dr. Hardy. “That makes it harder for her to clear mucus secretions, and she tends to get lung infections more easily. She also was not growing well because of a lack of pancreatic enzymes, and she had chronic vitamin defi ciencies.”

Dealing with Mackenzie’s cystic fi brosis has meant making adjustments for the entire family. “When Mackenzie was in the hospital, we always made sure someone was with her,” Steve says. “It helped that Traci and I are both self-employed, so we could take turns at the hospital. We also got a tremendous amount of support from family, friends, and neighbors. After she got out of the hospital, we had to go through a learning process in how to cope with her cystic fi brosis at home, and we had to fi gure out how to maintain some sort of normal routine.”

Mackenzie’s new “normal” routine involves getting up every morning at 6 a.m. to spend 30 to 45 minutes doing airway clearance treatments with a “percussion vest” that helps loosen and get rid of mucus in her lungs. She repeats that process again in the afternoon or evening—or more often if she’s not doing well. She also uses various inhaled medications—including a bronchodilator (Albuterol) that relaxes muscles in the airways and increases airfl ow to the lungs, as well as a concentrated saline solution to make it easier to cough out mucus.

“Another inhaled medication, an enzyme called DNase, helps to break down the DNA that makes the mucus so thick and sticky,” Dr. Hardy says. “DNA is a highly coiled substance and is released into the mucus when white blood cells die. It is like a Slinky, and, when stretched, tends to

snap back, making it hard to clear from the airways. The DNase chops the DNA into tiny pieces, liquefying the mucus.

“Mackenzie also takes pancreatic enzymes with every meal or snack, as well as daily vitamin supplements, especially the fat-soluble vitamins A, D, E, and K,” Dr. Hardy continues. “She takes an antibiotic, azithromycin, three days a week to help prevent infections, and it also acts as an anti-infl ammatory. In addition, there is an oral medication, Ivacaftor, that has shown promise for fi xing the defective CF protein at the surface of the cells to move fl uid and chloride properly, which hydrates the airway surface to thin the thick, sticky mucus so it is easier to cough out.

“There is no gene treatment for cystic fi brosis yet, but there are research projects in early phases,” Dr. Hardy adds. “Exciting new research is just starting on a small molecule to correct the most common genetic defect that causes CF. Phase I and II trials were promising, and our Cystic Fibrosis Center at Children’s will be part of international Phase III trials. We don’t know yet, but Mackenzie might be considered a candidate for these trials.”

Taking all her medications has become a routine by now, Mackenzie says. “My parents nag me all the time, asking if I’ve taken my pills. I answer ‘Of course,’ with as much ‘attitude’ as possible,” she chuckles.

Steve says that Mackenzie has had several infections and has been on various antibiotics since her diagnosis. “We’re fortunate, though, that now

we can provide most of her care at home when she does get sick,” he adds. “Plus, Mackenzie now gets a lot of her follow-up care at Children’s Specialty Care Center near our home in Walnut Creek. Dr. Hardy is at the clinic there every other week, and we can do simple tests and exams there. It is awesome to have that facility so close to home.”

Because cystic fi brosis is a “hidden” disease that doesn’t present many outward symptoms, people often don’t realize Mackenzie has a serious disease. And that suits her just fi ne.

“The great thing about Mackenzie is that she hasn’t let the disease defi ne her,” says Traci. “She has frustrations at times, but Dr. Hardy agrees with us that it’s important to let her be as ‘normal’ a kid as possible. She looks like an average 15-year-old. You’d never know she has a chronic disease, and now she’s at a point where she doesn’t tell people she has cystic fi brosis.”

Having just fi nished her freshman year at Carondolet High School in Concord, Mackenzie is continuing her athletic pursuits, but her favorite sport is now volleyball, rather than soccer. “I love volleyball,” she emphasizes. “I’m not sure I’m good enough to play in college, but I would love to play as long as I can.” Steve adds, “We believe Mackenzie can do

anything she wants to do.”


Mackenzie’s clubbed fingers were one of the telltale signs of cystic fibrosis.

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.

“We believe Mackenzie can d

anything she wants to do.”

—Steve, Mackenzie’s da


KEEPING SAFEFROM 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.

www.preventing childrens injuries.org

Children’s Hospital OaklandKohl’s Injury Prevention Program

Watch this!Actively supervise: Keep your eyes on your child and have him within arm’s reach when around water!

TEXT OUCH TO 30644

Health andsafety tips

for children

The Emergency Department and Trauma Center at Children’s Hospital & Research Center Oakland are here to help if your child is injured—but we’d rather help prevent the injury in the fi rst place. Through its Safety and Child Health Advocacy eff orts, Children’s Hospital seeks to eliminate unintentional childhood injuries and keep children safe and healthy.

It’s estimated that 90 percent of accidental injuries can be avoided. Unintentional injuries are the leading cause of death among children 14 years of age or younger. Each year, more than 5,600 children in this age range die in the United States, and more than 120,000 become disabled from unintentional injuries.

Kohl’s Injury Prevention ProgramIn partnership with Kohl’s Cares, the ChildrenHospital Kohl’s Injury Prevention Program provides safety education for patients, children, and families.

Check out these two ways to get safety information courtesy of Children’s Hospital Kohl’s Injury Prevention Program

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 desirefor our buildings to refl ect the quality of our care, improve the patient and family experience, and provide our neighborhood withan architecturally beautiful structure of which to be proud.


BUILDINGPROJECT

Rebuilding and modernizing our medical facilities will preserve our community’s pediatric healthcare services.

Children’s Hospital & Research Center Oakland is Northern California’s only independent not-for-profi t regional medical center for children. We are the only designated Level 1 pediatric trauma center with the largest pediatric inpatient critical care unit in Northern California. Children’s Oakland has 190 licensed beds, 201 hospital-based physicians in 30 specialties, more than 2,700 employees, and an annual operating budget of more than $350 million.

For us to continue to serve our region’s current and future healthcare needs, Children’s Oakland must rebuild and modernize facilities to meet new seismic safety standards. The Children’s Hospital & Research Center Oakland Modernization Project will address capacity shortages and advances in modern medicine. Upgraded facilities will accommodate new medical technologies and the new hospital standard of single-patient rooms that ensures patient and family privacy, patient safety, and comfort.

We want to minimize disruption to our neighbors during this process. This means maximizing the use of our existing land and buildings to minimize neighborhood impacts. We aim to keep the height of any new buildings consistent with the height of our existing facilities. A major emphasis will also be to retrofi t and modernize existing spaces and buildings to minimize the need for new construction.

CHILDREN’S OAKLAND MODERNIZATION PROJECT

Engaging our community in the planning process is one of ourMaster Plan’s guiding principles. By involving a full spectrum of the hospital’s extended circle—including neighbors, familiespatients, physicians, staff , donors, and local community leaderin our planning process, a collaborative blend of voices emergto ensure our future hospital meets the collective vision.

Children’s Oakland held a series of neighborhood meetings in March and April 2012 to introduce the concept of our Master Plan to interested community members. Then, in July 2012, thehospital and design team created a milestone event, known as100 Voices: Creating a Vision, to capture ideas for the future oChildren’s Oakland and to fuse those ideas into a synthesis of concepts that will be echoed throughout the design of the newhospital campus.

In the months ahead, Children’s Oakland will continue to seek community input as it develops the best way to design and build seismically safe, modern facilities while addressing the community’s needs and mitigating potential impacts.

For more information about the project or to sign up for updates, please visit us at www.CHOnext100.org.

OUR PROCESS

1970s

2013


BUILDINGPROJECT

NEIGHBORHOOD MEETING SUMMARY

At the community meeting on March 14, 2013, Children’s Oakland shared three site alternatives and renderings for the location of the new Outpatient Center that is planned to be built during Phase One of the Modernization Project. Neighbors preferred the “West on 52nd Option” because the building is situated away from the neighborhood and would be least likely to cast shadows upon the houses from that location (see illustration below).

Parking remains the biggest voiced concern about the 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 transportation a priority during and beyond our construction

process. We off er a free shuttle service between the hospital and the MacArthur BART station, and we have bicycle racks in a secured area of the parking structure that both visitors and staff can use.

The hospital plans to fi le a draft Environmental Impact Report (EIR) later this year and gain approval for the fi nalized plans in 2015. We will continue meeting with the community and incorporating feedback into our Master Plan throughout this process.

Option preferred by hospital and neighborhood.

For more detailed information about thModernization Project, please visit: www.CHOnext100.org

FOOD CORNER


Kim Alter, HavenLocated in Oakland’s Jack London Square, Haven is the third restaurant from the Daniel Patterson Group. Serving new Californian cuisine from Executive Chef Kim Alter, the menu features craveable, technique-driven food, including whole animal and vegetable preparations, shareable plates, and sweets.

Chef Kim Alter was nominated for Food & Wine’s 2013 The People’s Best New Chef. Chef Kim is the only chef in Oakland to be nominated out of 10 statewide and 100 nationwide chefs, and she is one of only 10 women selected.

What’s for dinner homemade gnocc

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

AkhilAkhil, age 9, is one amazing kid. HandPrintsfound out about his passion for food (rumohas it he can whip up dinner with anything you have in your pantry) and thought, “Let’s get him to the kitchen!” Luckily, Kim Alter graciously volunteered to give him a personal cooking lesson at Haven. Says Akhil, “It was one of the best days of my life!”

Read Akhil’s food blog:http://akhilsspicekitchen.blogspot.com/

When we found out that Kim Alter wanted to partner with Children’s Hospital in some way, we jumped at the chance.

We paired her with budding chef Akhil for a night of learning, laughing, and a meal we’ll never forget.

FOOD CORNER


1. Bake the potatoes at 350 degrees until cooked through (approximately 1 hour).

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.

1 2 3

4 5Secret revealed: Kim pushes the baked potato through a fi ne mesh sieve. This makes her gnocchi extra light.

making the gnocchi


FOOD CORNER

6. Cut off about 1 cup of the mixture and roll it into a skinny log, a halinch in diameter. Cut osmall pieces half an inclong.

7. Cook in salted boiling water. Allow gnocchi trise to the surface andcook for 1 minute. Drai

6 7

fi nishing it off

Mince green garlic into tiny pieces.

Put green garlic, olive oil, and salt in a pot. Cook on low until the garlic is soft and translucent.

Garnish with edible fl owers.

Top with fresh ricotta.


FOOD CORNER

POTATO GNOCCHI1 pound of russet potato

1 cup all purpose fl our

1 egg

1 teaspoon salt

DIRECTIONS1. Bake the potatoes at 350 degrees until cooked through (approximately 1 hour). 2. Run the potatoes through a food mill, or push through a colander using the

back of a large spoon onto a clean surface.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.10. After the gnocchi have cooled, remove the ice bath and coat gnocchi

with olive oil.

*Pro tip: Using your hands and the pastry scraper, gather the dough into a ball and begin folding it. Folin more fl our for the fi rst couple of folds, and turn the dough over 8-10 times total. The goal is to incorporate the fl our as thoroughlyas possible without working the dough too much.

HOMEMADE RICOTTA1 gallon milk

1 quart cream

1 quart buttermilk

4 teaspoons kosher salt

DIRECTIONS1. Combine all ingredients in a large pot and place on the stove.2. Boil until you see the dairy break.3. Take the pot off the heat.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 SAUCE1 bunch green garlic (can substitute leeks, chives, or green onions)

1/2 cup olive oil

Salt to taste

DIRECTIONS1. Clean the green garlic and mince fi nely.2. Place all the ingredients in a medium size pot.3. Cook on low heat until the garlic is soft and translucent.4. Adjust your seasoning.5. Coat the gnocchi with the green garlic sauce and

top it with the fresh ricotta.

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

Akhil and his mom Srija at Haven


GIVINGBACK

4th Annual Notes & Words

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 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.

Writers and Musicians Take the Stage for Children’s Hospital

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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.

GIVINGBACK

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GIVINGBACK


Skateboarding and Music as a Positive Force for Change

s

East Bay music giants Green Day have joined forces with 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!”

For more than a decade, Kiewit Infrastructure West Co. has generously

raised funds for vital services at Children’s Hospital Oakland. The company’s 2013 Charity Golf Tournament, held at Napa’s Silverado 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.

Kiewit Charity Golf Classic Raises Over $81,000 for Children’s Hospital Oakland


The act of giving is nothing new for Walnut Creek resident Roselinde Russell. She has been a longtime supporter of several charities, but “loves the good work being done at Children’s.” Roselinde has said she is considering a bequest gift in the future, but really wanted to do something today. She decided to establish a Charitable Gift Annuity (CGA) to deepen her commitment to the organization and

guarantee fi xed income for life. By supporting the Foundation through a CGA, Roselinde received an immediate tax deduction, and, when the annuity matures, the remainder will be used to help children in the future.

“The CGA has actually increased my retirement income and allowed me to make a real commitment to Children’s Hospital,” Roselinde says.

Building a Legacy Through Charitable Gift Annuities

GIVINGBACK

Roselinde

Team members from Rite Aid’s Walnut Creek 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.

Rite Aid Raises $146,081 Through Iconic Balloon Sales

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.

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 Hospital & Research Center Oakland747 52nd St. Oakland, CA 94609-1809

CHILDREN’S HOSPITAL OAKLANDSPORTS MEDICINE CENTER FOR YOUNG ATHLETES

ATHLETE DEVELOPMENT PROGRAMContact Daniel Kamenetzky, 510-428-3558 or email [email protected]

INITIAL EVALUATION EVALUATION AFTER TRAINING

First contact in front of the center of gravity

First contact at the same level of the center of gravity

Video analysis feedback is tailored specifically to each athlete’s necessary core skills

p f a y t a hathletepp

’s necessary core skillst t

Each athlete can obtain copies of their recordings

Program schedule: We off er a complimentary 20-minute consultation about how the program can optimize your training program. The proceeding athlete evaluation lasts approximately 3 hours. After the evaluation, implementation of a proposed training program can begin.

Contact: Daniel Kamenetzky510-428-3558 • [email protected]

Program outcomes:• Enhanced safety for young athletes• Enhanced technique and athletic effi ciency• Enhanced sports training design and implementation• Objective tools for coaches to design training and game

strategies

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

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