April is National Autism Awareness Month and the perfect time to share some good news for children with autism spectrum disorder, or ASD.

Parents of children with ASD have commonly been told that if their child isn’t speaking by age 5, he or she likely never will. However, a new study in the journal Pediatrics counters this belief.

The study of more than 500 children suggests that even when children are not yet using phrase speech at age 6 or 7, there’s still a lot of hope that they can go on to gain meaningful language.

The study looked at children ages 8 to 17 who were diagnosed with autism and severe language delays at age 4. None of the children in the sample were using phrase speech at 4 and many were not using words at all.

Researchers gathered information about these children’s development and found that most of them actually went on to acquire communicative language. Nearly half (47 percent) became fluent speakers and more than two-thirds (70 percent) learned to speak in simple phrases.

Certain factors predicted whether severely language-delayed children with autism eventually developed speech. Most of the children who did so had comparatively stronger nonverbal cognitive skills — perception, memory, judgment and reasoning — and lower social impairment than those children who did not develop language.

Somewhat surprisingly, the intensity of repetitive behaviors and restricted interests did not affect whether or not language emerged, nor did demographics such as parent income and education level or child psychiatric characteristics.

These findings offer hope that language-delayed children with ASD may well go on to develop speech in elementary school or even as teenagers. The study also suggests that social skills and nonverbal cognitive skills are building blocks for language and that targeting these areas in early intervention may ultimately help promote language emergence.

Lark Huang-Storms, Ph.D.
Director, Autism Program
OHSU Doernbecher Children’s Hospital
OHSU Institute on Development & Disability

Resources:

• “Predictors of Phrase and Fluent Speech in Children With Autism and Severe Language Delay,” Pediatrics, April 1.
• Autism Society of Oregon
• Autism Speaks
• Autism Treatment Network

The Jaussi family, 2012 Heart of Doernbecher Auction.

This year marks the 15^th anniversary of the Heart of Doernbecher Auction. On Saturday, April 20, Doernbecher supporters will come together at the Portland Art Museum to enjoy dinner, music, silent and live auctions, and a moving testimonial from a Doernbecher family.

Contributions to the Heart of Doernbecher Auction make a substantial impact on the lives of children receiving treatment at Doernbecher.

The event has an interesting history dating back more than 15 years, starting with an all-women’s golf tournament planned by the Friends of Doernbecher chapter Women for Children.

The Heart on the Hill, as it was called then, was a thank you dinner and auction that concluded the golf tournament. The tournament and auction had great support from the grocery and food industry, and to this day, many of the original companies continue to sponsor and support the Heart of Doernbecher Auction.

After a few years of running the event, the Women for Children chapter decided the event could be even more successful if they passed it along to the Doernbecher Foundation to plan and execute. The name was changed and the first official Heart of Doernbecher was born in fall 1998.

Today the auction brings together hundreds of community leaders from Oregon and southwest Washington to raise money for the hospital. To date, the event has raised more than $7 million for Doernbecher.

In the past, funds from the auction have been used to support research and hospital improvements, the expansion of the Kenneth W. Ford Northwest Children’s Cancer Center, the Friends of Doernbecher Endowment Fund for Medical Care, the Child Life Endowment Fund, the Doernbecher Pediatric Emergency Department renovation, and to support the Doernbecher Neonatal Care Center.

We have a great celebration planned this year in honor of the 15^th anniversary. We are looking forward to raising lots of money for the children at Doernbecher!

If you’re interested in attending or learning more about the Heart of Doernbecher Auction, please contact me at 503-220-8341 or wipfli@ohsu.edu, or click here.

Carolanne Wipfli
Assistant Director of Development
Doernbecher Children’s Hospital Foundation 

Dr. Matt Hunt

No matter what we do in life, having our students follow in our footsteps is a sweet reward.

One of the important missions carried out at OHSU Doernbecher Children’s Hospital is the education of the next generation of innovative, high-quality and safe medical and surgical practitioners. Indeed, the university has some of the leading training programs in the country in many fields.

At a recent medical meeting, I spoke with the chairman of neurosurgery at the University of Minnesota about one of his faculty members, Dr. Matt Hunt, who trained in our residency program here at OHSU and OHSU Doernbecher Children’s Hospital. During this conversation I learned that Matt has just received an important promotion: to be the director of residency training at the University of Minnesota.

As a neurosurgery resident here at OHSU and OHSU Doernbecher, Matt was intensively involved in mentorship, leadership and education. He served as chief resident in our department, was an elected representative to the Office of Graduate Medical Education, and won national recognition for his work on education related topics.

OHSU Doernbecher has become a recognized center for educational excellence, safety and innovation, working to make sure that there are always highly trained neurosurgeons to care for Oregonians and our children, as well as countless other patients around the United States.

When I heard about Matt’s ongoing educational accomplishments and promotion, I realized that any educational program worth its salt should also be training the next generation of inspired educators. Matt’s success is ours as well, and we celebrate it with him!

Nathan Selden, M.D., Ph.D.
Mario and Edie Campagna Chair of Pediatric Neurosurgery
Director, OHSU Neurological Surgery Residency Program
OHSU Doernbecher Children’s Hospital

As we head into Spring Break, many children will be playing outdoors, and the most important message I can give families is this:

Most childhood injuries can be prevented!

With that in mind, please consider the following-injury prevention tips:

• Apply sunblock frequently — to prevent sunburn now and skin cancer later in life.

• Always wear a helmet when riding a bike, skateboard or while on the mountain skiing or snowboarding — head trauma is one of the most common serious injuries in childhood.

• Evaluate windows in your house to prevent falls — as the windows open during warm days, consider window guards for upper-level windows, especially if you have toddlers at home.

• Supervise your children — especially with trampolines and scooters. There should never be more than one child bouncing on the trampoline at a time.

• Wear protective gear — with most sports, but especially with skateboards and scooters, or if your child is just beginning to ride a bicycle.

• Know where your children are at all times and check in frequently when they are playing with other children.

• Spring Break is a great time for “Spring Cleaning” —  check to be sure medications are safely and securely stored in the house to prevent poisonings.

• Restrain your children properly, and don’t text while driving in motor vehicles — injuries sustained while driving remain common and many are preventable.

Although we hope you won’t need to pay us a visit any time soon, know that the 24/7 OHSU Doernbecher Pediatric Emergency Department is a welcoming place for children who suffer injuries, with pediatric emergency nursing care, short waiting times and a child-friendly environment.

Have a fun-filled – and safe! – Spring Break!

David M. Spiro, M.D., M.P.H.
Medical Director, Pediatric Emergency Medicine
Associate Professor of Emergency Medicine and Pediatrics
OHSU Doernbecher Children’s Hospital

I received a copy of a letter recently that reminded me of the lasting positive impact that a life in medicine and surgery can have. I asked the author of the letter and her family if we could share their story, and they generously told us to go ahead. I hope it inspires you as much as it did me.

In 1970 my mentor and Doernbecher benefactor, Dr. Mario Campagna, operated on Peggy Baker to clip a brain aneurysm. In the words of her daughter, Sheila (Baker) Bradley, Dr. Campagna “saved her life.” Forty-three years later, Sheila wrote a letter to share the rest of a remarkable story with Dr. Campagna and myself.

Dr. Nathan Selden and Owen in the OHSU Doernbecher Pediatric Neurosurgery Clinic.

Sheila went on to have children of her own, including Jennifer, who herself had a little boy named Owen, who is a terrific kid, full of life, but greatly endangered by severe seizures from a stroke he had before he was even born.

Owen was under the expert care of neurologists in Central Oregon and eventually also at OHSU Doernbecher. Medication, however, could not control his serious epilepsy.

His doctors realized that only a major brain operation, functional hemispherotomy, could disconnect the damaged side of his brain, free him from seizures, and give him a shot at improved development and a healthy, happy childhood.

When I met Owen, I had no idea of the connection between his great grandmother and Dr. Mario Campagna.

It took Owen’s grandmother a few weeks to realize that my position as head of neurosurgery at Doernbecher Children’s Hospital and special support for the work we do here comes from a transformational gift made by Mario and Edith Campagna that endowed the Campagna Chair, which I hold.

Forty-three years after he saved the life of Owen’s great grandmother, the Campagnas’ vision, generosity and leadership made sure the resources were there to treat Owen.

Dr. Stacy Nicholson, Credit Union for Kids Chair of Pediatrics; Dr. Nathan Selden; and Mario and Edith Campagna and at the June 2012 launch of the Campagna Chair of Pediatric Neurosurgery.

Sheila, Owen’s grandmother, wrote to the Campagnas:

“My family and I thank you both, from the bottom of our hearts, for your generosity and philanthropy that have made this possible for my grandson. You have no idea how much it means to me. You have touched my life twice, and I am grateful.”

For me, the Campagnas have been wonderful mentors and dear friends. They exemplify a life well lived, with exceptional values and lasting success. For Doernbecher Children’s Hospital and Oregon, they have been a true blessing.

Nathan Selden, M.D., Ph.D.
Mario and Edie Campagna Chair of Pediatric Neurosurgery
Director, OHSU Neurological Surgery Residency Program
OHSU Doernbecher Children’s Hospital

You’ve done your research. You’ve checked them out. You’ve found the seat that fits your child, fits your car, and you are ready to use it on each and every trip. Now, just how long can you use this seat? And how will you know it is time to move on to the next one?

Let’s go over a few simple rules to help you know you are using the very best seat in the safest possible way.

Rule #1: The manufacturer is always right.

Every car safety seat has very specific weight and height limits, on both the lower and upper end. It is never OK to use a seat for a child that does not fit within those limits.

Simply put: The seat was tested, and was found to work, for a designated weight and height. Anything else could lead to injury or worse.

Rule #2: Check the date.

Every seat has a sticker or stamp that states the date on which the seat was manufactured. This serves two big purposes. The first is to identify the seat in case of a recall. Manufacturers will frame the recall based on model number (also on the sticker/stamp) and manufacture date. The second is to let you know when the seat has expired and should no longer be used.

Using an expired seat can be more dangerous than eating expired sushi, so it pays to know.

Many seats now also have an expiration date — much like the food in your fridge. Any seat that does not have an expiration date can be assumed to “expire” six years from the date of manufacture. Having worked in child passenger safety since 1997, I have yet to see a moldy car seat — so how can they “expire?” There are two big reasons exist for this.

1) Technology continually produces safer and better seats, and the manufacturers assume that if a seat has been around for six years, then it will not represent the best protection for a child.

2) The seats are subjected to the harshest of temperature fluctuations, from freezing in the winter to broiling in the summer, and this can take a toll on the seat’s components and cause them to slowly degrade. This process is not easily seen on the seat, but tiny defects in the plastic and the harness webbing can lead to increased injury risk to kids in seats, even if the seat is being used properly.

Rule #3: Know the history.

Car safety seats are designed to effectively protect children who fit within the weight and height limitations, and like bike helmets, they must be replaced after a crash.

We would consider a crash significant if:

1. The car was unable to be driven afterward.
2. There is damage to the door nearest to the car safety seat.
3. Any passenger suffered significant injury.
4. Any of the airbags deployed.
5. There is any visible damage to the car safety seat.

If any of those things happen, the seat should be replaced. If you are not 100 percent certain that the seat has never been is a crash, then you should not use it. This is why we strongly advise against secondhand seats from consignment stores and flea markets.

Along these lines, if the seat does not have the sticker/stamp with the manufacture date and model number, we cannot know for certain if it has been recalled, or if it is expired.

Take a minute and double-check the weight and height limits, and the manufacture and possible expiration date of your particular seat. Make certain you know the history of your seat as well. If you are not sure, get a new car safety seat that will fit your child and your vehicle. It isn’t worth gambling your child’s life.

If you have questions or need help, please contact the Doernbecher Tom Sargent Children’s Safety Center at 503-418-5666 or at safety@ohsu.edu  and we will make sure you have all the information you need!

Ben Hoffman, M.D.
Medical Director
OHSU Doernbecher Tom Sargent Children’s Safety Center
Assistant Professor of Pediatrics, OHSU Doernbecher Children’s Hospital

Voices of Childhood Cancer came alive March 1 – 3 on the 10^th floor of OHSU Doernbecher Children’s Hospital. That’s when StoryCorps staff audio recorded the 40-minute conversations of 18 “interview pairs” for our Doernbecher-StoryCorps oral history project.

StoryCorps’ mission is to celebrate and honor one another’s lives through listening; they have recorded close to 100,000 interview pairs throughout the United States, all archived in the Folklife section of the National Library of Congress.

The Doernbecher project, Voices of Childhood Cancer, was conceived to honor the lives of those touched by childhood cancer, to preserve their stories for history, and to inspire others who listen.

Patients and family members were paired with other patients, siblings, parents, and friends, and they came from as far away as Baker City, Ore., to participate.

Two 11-year-old identical twins, one with cancer and one without, were the first to converse.  Then came a dialogue between a 6-year-old with cancer and her chemo pal.

Other interview pairs included two mothers whose boys had died of cancer, a 13-year-old leukemia survivor and her creative arts coach, the parents of a 12-year-old transplant recipient, and the mother and 16-year-old son whose daughter/sister died of cancer nine years earlier.

A young cancer survivor interviewed her older sister and their parents interviewed each other.

Two 10 year-old cancer survivors, both in the same class at school, talked to each other, as did two teenage patients not previously acquainted, as well as a patient and her good friend.

Several mothers and fathers described their cancer journeys to hospital staff.

Wrapping up the weekend, two grandparents shared their story about their granddaughter’s cancer experience.

All participants received a CD recording of their conversations, and each recording will be archived for history. StoryCorps will edit a few of the recordings into poignant vignettes for Doernbecher to use and share, and all of the interviews will be archived in the Library of Congress, and considered for the StoryCorps broadcast on National Public Radio. Participants were photographed after each recording.

One sibling remarked that his conversation will shape him in a way he had not anticipated. A teenage survivor stated she chose to participate so people listening to her story would learn that cancer “shouldn’t be a label”.  An oncology fellow in training interviewed a bereaved father and commented: “That was one of the most grounding conversations I’ve ever had.”

Another three-day recording session is scheduled for July.

For the OHSU Doernbecher staff involved in its design, the project gives us a chance to embrace the humanism in our work.

Linda Stork, M.D.
Robert Neerhout Professor and Head
Division of Pediatric Hematology/Oncology
OHSU Doernbecher Children’s Hospital

Many people are surprised to hear that congenital heart disease is the most common birth defect in the United States and the leading cause of death in the first year of life. Even fewer realize that congenital heart disease is more common than cystic fibrosis, muscular dystrophy and all childhood cancers combined.

As I helped my children cut out their “heart-shaped” Valentine’s Day cards last month, I couldn’t help thinking about the difference between our romantic image of the heart and its actual shape.

Chest X-ray

Those of us who have the privilege of taking care of children with heart defects have come to rely on the extraordinary technological advances in medical imaging over the past century that have brought us increasingly clear, strikingly accurate, and truly beautiful images of the human heart.

Up until the 1950s, the images available to help us diagnose heart defects were limited to chest X-rays, which were woefully inadequate because they only provide information about the size and outline of the heart. Physical examination and the child’s symptoms were much more useful in guesstimating the most likely diagnosis.

Angiography showing the two major pulmonary arteries within the lungs.

A major breakthrough occurred in the 1950s with the development of angiography. For the first time, we were able to see the outlines of structures within the heart. These images allowed us to accurately identify holes within the heart, narrowed or leaky valves, and many other categories of heart defects.

While this was a huge advance, there were downsides – the imaging required sedating the child and placing catheters into her veins and arteries, and used radiation to take moving pictures of the heart.  Still, cardiologists and surgeons finally had accurate information to help create recommendations and plan treatments.

The next major advance came almost 30 years later with the development of echocardiography. This type of imaging uses sound waves to visualize the heart and surrounding vascular structures. Although the first pictures were blurred, the technology improved rapidly, ultimately producing stunning images and allowing precise diagnosis of many forms of heart defects.

2-D echocardiogram showing the four chambers of the heart.

Currently two- and three-dimensional echocardiography produce beautiful images of the moving structures of the heart.  In addition, tiny transducers are now placed in the esophagus, or even within the heart, to make these images even more accurate.

But even this modality has its limitations. Measurements of chambers and vessels are imprecise, and air within the lungs inhibits the transmission of sound waves necessary to create the images.  Thus, echocardiography is less reliable for examinations of structures which lie near or beneath the lungs.

In the past decade, cardiac MRI and cardiac CT have become increasingly sophisticated, and are now integral to the process of making diagnoses and treatment plans for children with a number of very complex heart defects.

OHSU Doernbecher has one of the most advanced MRI systems in the world (click on this link to watch an MRI clip of a narrowed right ventricle pulmonary valve that has caused the pulmonary artery to enlarge).

Dianna Bardo, M.D., one of Doernbecher’s experts in pediatric cardiac imaging, creates exquisite moving images of the heart, lungs and vascular structures throughout the chest. The detail she is able to provide, in structures that can be as small as a millimeter in diameter, are truly breathtaking and are changing the field.

3-D CT image shows the right coronary artery coming from the left (arrow), an uncommon anomaly.

Many experts within pediatric cardiology predict that technological advances on the horizon will result in even more precise images of the heart. It stands to reason that the more precisely we visualize the intricate details of the heart, the better our results.

Those of us who base our decisions, plan and even guide our procedures with these images eagerly welcome each new advance. Dr. Bardo, and her colleagues are an essential part of the Doernbecher pediatric cardiology team.

Although we use the word ‘defect,’ there is beauty in every child’s heart, whether three or four chambers, holes, fused leaflets or narrowed vessels.

Whatever its shape, the heart captivates, fascinates and enchants us all.

Laurie Armsby, M.D.
Associate Professor of Pediatrics, Division of Pediatric Cardiovascular Medicine
OHSU Doernbecher Children’s Hospital

Dianna M. E. Bardo, M.D.
Associate Professor of Pediatrics, Divisions of Diagnostic Radiology and Cardiovascular Medicine
OHSU Doernbecher Children’s Hospital

From left: Mark Richardson, Stacy Nicholson, Jeffrey Kirsch, Jeffrey Koh

In January I was invited to a very special dinner celebration to acknowledge my friend and colleague Dr. Jeff Koh, head of pediatric anesthesiology at Doernbecher Children’s Hospital.

Dr. Koh was being honored as the first holder of the Fred Fax Professorship of Pediatric Anesthesia. This endowed position, a gift from the estate of Alice and Fred Fax, will support the important work of Jeff and his colleagues at Doernbecher now and in perpetuity.

At the dinner, listening to colleagues from near and far who were visiting to join in the celebration, I was reminded of the special talents that Jeff brings to his care of patients at Doernbecher.

His calm, warm and wonderful demeanor with children changes their operative experience (and that of their parents) for the better. His focus and skill as an anesthesiologist brings an unmatched level of safety and care to their outcomes.

Indeed, when one of my own children needed an anesthetic for placement of ear tubes, Jeff took care of them. This passion for quality extends to all of Jeff’s anesthesia colleagues at Doernbecher, in part because he helps to inspire it.

Jeff is also a superlative leader, who keeps a complex operation room environment humming, makes sure everyone is at their best, and that everyone’s contribution is valued. Holding the Fax Professorship is emblematic of all these skills and of what Jeff brings to Oregon’s children.

My favorite part of the dinner was to see Jeff’s wife, children and even siblings and father, some from very far away, visiting to enjoy their family member’s success, and to better understand his contributions. That night, they too became part of our “Doernbecher family”!

Nathan Selden, M.D., Ph.D.
Mario and Edie Campagna Chair of Pediatric Neurosurgery
Director, OHSU Neurological Surgery Residency Program
OHSU Doernbecher Children’s Hospital

The pediatric cancer team at OHSU Doernbecher Children’s Hospital joins the OHSU Knight Cancer Institute in its support of House Bill 2896, which restricts children younger than 18 from using tanning devices, unless proof of a physician exemption is provided.

Read Dr. Brian Druker’s call to action on the 96,000 Square Miles blog and let us know your thoughts:

“Our children deserve stronger protections from cancer-causing tanning devices.”

Linda Stork, M.D.
Robert Neerhout Professor and Head
Division of Pediatric Hematology/Oncology
OHSU Doernbecher Children’s Hospital