Resilience

In my work as a pediatric brain and spine surgeon at OHSU Doernbecher Children’s Hospital and OHSU Hospital, I get to meet some pretty amazing children. Alex Shepherd most certainly counts among them.

Alex came to Doernbecher after a seizure led to diagnosis of a brain tumor. Despite the presence of an 11 cm long ‘C’-shaped mass in the depths of Alex’s brain, he remained a charismatic and enthusiastic 10-year-old. Except for the moments of his seizures, he also remained tremendously precocious and bright, with an amazing ability to tell stories and engage with the doctors and nurses around him.

In fact, Alex seemed to be helping his parents and all of us cope with the challenges of his illness ahead.

At Doernbecher, children come from as far away as the distant corners of Oregon and even Idaho and Alaska for care of difficult to treat brain and spinal cord tumors. Even so, Alex’s very complex tumor posed a serious challenge to all members of our multi-specialty team. To help him, we needed to remove the entire tumor despite its extent and depth within the brain, as well as deliver additional therapies.

In May 2013, Alex’s therapy began with a series of four brain operations to completely remove different components of his tumor from the front and back regions of the brain.

Recovering from the fourth operation, Alex, we immediately realized, was still Alex, with his sense of humor, intelligence, and engaging personality intact.

He moved on to other parts of Doernbecher Children’s Hospital and clinics to carry on the rest of his therapies. It has been a joy for me to follow his progress through occasional visits back to my clinic in neurological surgery.

Upon emerging from months of intensive surgical and medical care, Alex also made a big impression on a number of other people, including television personality and host, Ellen Degeneres and her huge national audience.

On Feb. 3, 2014, Alex and his parents appeared on Ellen and told some of his story to a rapt audience. America could see what we have seen for months: the tremendous spirit and resilience of a terrific child facing a difficult disease with energy and courage, and maintaining everything of himself that his parents and his community celebrate.

If that were not enough, Ellen and her wonderful team provided a huge boost to the Shepherds. Recognizing the burden of constant long drives from southern Oregon for Alex’s treatments at Doernbecher, and the impact of missed work for his parents who are dedicated to his care, Ellen surprised the Shepherds with a new car and $10,000 cash to help cover expenses!

There was not a dry eye in the television studio or at Doernbecher, where doctors and nurses crowded around screens to watch the touching interview.

Alex and his family, and countless patients and families like the Shepherds, remind us of why we are blessed to do the work we do. Thanks Alex.

Alex’s interview with Ellen:A New Car for an Inspiring 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

 

Defining the best practices

Doernbecher Children’s Hospital has the largest program in Oregon for the repair of skull birth defects called cranial synostosis. In synostosis, one or more of the skull growth plates is missing, which can cause a severely misshapen head, pressure on the brain, developmental delay and even blindness.

Surgery to repair synostosis requires an accredited specialty team comprising a pediatric neurosurgeon and a pediatric craniofacial plastic surgeon.

At Doernbecher, I am privileged to do this work with one of the best craniofacial plastic surgeons in the country, Dr. Anna Kuang.

We typically perform more than 40 major reconstructive operations for skull deformity in infants each year. Unfortunately, even after surgical repair of a skull deformity as a baby, there is a risk in the first few years of life that the problem will recur.

At Doernbecher, Dr. Kuang and I were anxious to predict which children might suffer this rare complication. To tackle this problem, we analyzed the results of surgery on more than 150 children undergoing treatment at Doernbecher.

From this study, Dr. Kuang and I learned two important things. First, thankfully, recurrence rates at Doernbecher are among the lowest reported. Second, and even more importantly, we identified a small subset of patients at more risk for recurrence and a strategy for timing their surgery to improve the chances of a permanent result from the first operation.

Along the way, we identified some findings on routine post-surgical follow up testing that could confuse surgical teams into over-diagnosing recurrence and undertaking unneeded operations.

Dr. Kuang and I reported these important findings during the past year in two major surgical journals: Plastic and Reconstructive Surgery and the Journal of Neurosurgery. We each also travelled to national surgical meetings to present our results immediately to other program leaders from around the country (and the world).

By taking these additional steps, we can help make sure that all children benefit from the research and quality improvement efforts taking place at Doernbecher and OHSU. Our mission is not only the best care for any child that comes to us from Oregon and the region, but also for every child no matter where their care is given.

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

What parents should know about childhood palpitations, abnormal heartbeats

Unpleasant sensations of fast or forceful heartbeats are called palpitations. Young children with palpitations usually tell their parents that their heart is “beeping” or “going crazy” or words to that effect. Older children typically are able to describe the feeling more effectively. What is a parent to do?

The most important thing is not to panic unless the child passes out, which is extremely rare. Should this happen, call 911 right away and consider doing CPR.

Abnormal heartbeats in children are fairly common and almost never life-threatening. If possible, put your finger to their pulse in the elbow or the wrist and try to count the pulse rate or put your hand on their chest and try to feel their heart. If the heart rate is abnormally fast due to an abnormal heart rhythm, also known as an arrhythmia, it will be over 180 beats per minute and this is too fast to count. If this happens, take your child to the nearest emergency room.

If the heartbeat is not that high and/or the racing heartbeats are happening in short bursts, it is important to see your pediatrician or family physician, who will do an ECG/EKG, or electrical recording of the heart. If that recording is normal, your physician may recommend a heart monitor, usually a heart event recorder and ask the child to try and “capture” one of the fast heartbeats.

Once the rapid heart rate has been documented by ECG, a heart specialist can determine whether it is an abnormal heart rhythm. Palpitations are almost always due to a heart arrhythmia or an anxiety or panic attack. The heart event recorder can help establish which one it is. Rare glandular problems like thyroid abnormalities form the rest, and can be excluded by a simple blood test.

In these days of busy families and over-worked kids, stress-related anxiety attacks are not uncommon in kids. If the recorder suggests that the palpitations are not due to an arrhythmia, but likely due to stress, your doctor will recommend methods to address them that may involve seeing a psychologist or a counselor to get at the cause of the stress.

It is important to realize that the anxiety attacks are not “brought on” by the child; they happen unconsciously and are disabling and scary to the child. It is important to be sympathetic and help the child through his/her issues. Sometimes families see a diagnosis of anxiety or panic attacks as a stigma and insist on more heart tests because, in their opinion, there is no way their child could be stressed. Unfortunately doing more tests is usually unnecessary, expensive and, more importantly, can make the child feel that there is something seriously wrong, which only adds to his/her stress.

Arrhythmias, on the other hand, are managed with daily medications or a day procedure known as a heart electrophysiology, which tests electrical-function, and ablation, which cauterizes or destroys the spot in the heart causing the abnormal heart beats.

Whether your child has an arrhythmia or stress-related palipitations, consulting your primary care physician right away and relying on the partnership between him/her and the heart specialist is the right way to go.

Seshadri Balaji, M.D.
Professor of Pediatric Cardiology
OHSU Doernbecher Children’s Hospital

Q: I think my child has the flu. Should we go to the Emergency Room?

A: You should first contact your pediatrician, but if your child has an extremely high fever — more than 104 degrees — or is acting unusual, for example very sleepy or irritable, you should consider seeking immediate medical attention.

Winter is a common time for infectious illnesses such as pneumonia, bronchiolitis, or lung infections, or the flu; ensuring your child gets a flu shot can prevent or reduce the severity of influenza.

Flu shots are especially important for children with chronic illnesses, such as asthma.

If your child does need emergency care, OHSU Doernbecher Children’s Hospital has an emergency room just for kids 24/7 and staffed by specially trained emergency medicine doctors and nurses who treat only children.

David M. Spiro, M.D., M.P.H.
Medical Director, Pediatric Emergency Medicine
OHSU Doernbecher Pediatric Emergency Department

Doernbecher Fanconi Anemia specialist invites you to walk/run for a cure

As pediatricians we care for children with a wide spectrum of illness and injury. Some of them are life-threatening, some more mundane, most heal. Children grow, parents are grateful and pediatricians thrive on the validation both provide. Only sometimes the news is that things will not get better, will last a long time and children will not grow to be their unencumbered, exuberant and irreverent selves.

Fanconi Anemia, or FA, is a rare, 1 in 180,000, illness that spells a long chronic course of office visits for the children and sleepless nights for the parents. The list of complications is long and the medical needs are daunting. It is easy to get lost in the complexity and heartbreaking to watch when lives are cut short after long suffering.

When Peg Padden’s son was diagnosed with Fanconi Anemia and subsequently passed away, she was not content to sit by. Determined to make a difference and help find cures so others would not have to go through the same agony, she organized the Valentine Fanconi Anemia Run/Walk 5K/8K/12K.

Through the years, she has found many friends and supporters that brave the inevitable drizzle and occasional cold that are the hallmarks of a February morning in Portland — more than 1000, last year. Many participants learn more about the disease as they meet other runners. Some turn out to be patients, some parents, others are doctors, nurses, medics, FA researchers, students or running enthusiasts. Altogether:  COMMUNITY.

What motivates Peg to organize the run and us to join? A commitment to the patients and a strong conviction that research will eventually offer a cure and help translate biological insight to tangible benefit — bench to bedside.

OHSU has been a center of excellence for FA research for many years and researchers here have made landmark discoveries that provide a deeper understanding of the disease. OHSU Doernbecher also serves as a home for the comprehensive care that FA patients with their medically challenging situation require.

Over the past nine years, the Valentine Fanconi Anemia Run has motivated 6,500 of us to get up early on a Sunday in February, lace up and join Peg. Along the way she has raised $350,000 for Fanconi Anemia research. Pretty amazing, really!

Come join us, Sunday, Feb. 9, 2014, at 8 a.m., and support the patients and the research to find cures.

Peter Kurre, M.D.
Associate Professor of Pediatric Hematology/Oncology
OHSU Doernbecher Children’s Hospital

Doernbecher physician competes in Ironman triathlons to benefit pediatric dentistry program

Jeffrey Koh, M.D., head of anesthesiology, OHSU Doernbecher

I was fortunate to compete in my seventh Ironman distance triathlon last November in Tempe, Ariz. As has been the case for all my Ironman races, I have paired my personal athletic journey with fundraising for one of Doernbecher’s very important programs. The past three years I have raised money for the Doernbecher Pediatric Dentistry Program, which provides much-needed dental care to the children of Oregon.

Oral hygiene in children remains a huge public health problem in our country, and the program at OHSU Doernbecher is working hard to help through direct care, research and education of the next generation of pediatric dentists.

Every year, I am reminded of the dedication required to prepare yourself for the 140.6 total miles traveled in an Ironman swim, bike and run. This effort pales in comparison to the strength and determination shown by our staff, patients and parents here at DCH.

While I have many personal reasons for putting myself through this every year, the fundraising I am able to accomplish truly completes the experience for me. I am grateful to be healthy enough to compete in these amazing events, to have the support of family and friends, and to work in an amazing place like Doernbecher where I am inspired daily by those around me. To those who think an Ironman is out of reach, I will simply say life is too short to wonder if you can do something, the real fun is trying!

Jeffrey Koh, M.D.
Professor and Chief, Division of Pediatric Anesthesia
OHSU Doernbecher Children’s Hospital

A beautifully illustrated concept

For surgeons trying to explain a new concept, surgical technique, or anatomical insight, a picture may truly be worth a thousand words. That is why I am always excited to work with my colleague Andy Rekito, an award-winning medical illustrator and artist, and assistant professor of neurosurgery at OHSU.

Whether I am representing Doernbecher’s neurosurgical work to the public, teaching neurosurgical young faculty and residents safe and proven techniques, or presenting an important new finding to colleagues around the country, one of Andy’s carefully designed and meticulously crafted illustrations are often what drive my message home and what my audience will ultimately remember.

A great example is surgery to treat a birth defect that occurs at the junction between the skull base and the top of the spine, called Chiari malformation. Doernbecher was one of the earliest hospitals in the United States to adopt and then systematically analyze a new, less invasive form of surgery for Chiari malformation.

Like traditional methods, this operation relieves pressure on the junction between the brain and spinal cord, restoring brain function. The unique aspect of the new technique is to preserve the skull lining that contains cerebrospinal fluid and protects the brain itself. This approach avoids some complications, reduces time in the hospital and even saves health care resources.

Recently, my colleagues and I published a major analysis of the outcomes of Chiari decompression surgery using the new technique compared with the traditional method. In addition to sharing the outstanding results of the new operation, I also wanted to give other neurosurgeons around the country important information about how to accomplish the surgery. That is where Andy Rekito’s illustrations came in.

In fact, not only were his anatomical and surgical illustrations effective in conveying the key concepts, they were also spectacular artwork that helped earn our paper the cover of a world-leading journal, Neurosurgery.

OHSU/Doernbecher neurological surgery is constantly striving to make care better, and to share our advances with others in the field to benefit all children. Outstanding colleagues like Andy make that possible.

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

 

 

Share a room with your baby, not a bed

Although sharing a bed with your infant can be common, sound research recommends against it. The American Academy of Pediatrics (AAP) recommends infants and their parents share a room, but not a bed.

The AAP updated their policy statement on “Sudden Infant Death (SIDS) and Other Sleep-Related Infant Deaths” in 2011 with specific recommendations that infants sleep on their own sleeping surface.

Having an infant sleep in a crib or bassinet decreases the risk of SIDS by as much as 50 percent. Room sharing without bed sharing allows for parents to be close enough to easily feed, comfort and monitor their baby.

Although parents feel they can easily monitor their children while asleep and bed sharing, studies have shown an increased risk of infant overheating, airway obstruction, head covering and exposure to tobacco smoke that can increase the risk of SIDS.

An adult bed is simply not designed for an infant, even with the best of parent intentions.

Babies younger than 3 months who were born premature and/or with low birth weight are at the highest risk from bed sharing due to low muscle strength and immature motor skills.

Parents need to be informed that bed sharing is dangerous. Sharing a room with your child facilitates bonding, feeding and comforting during the night without any risk to the infant.

Ask your pediatrician if you have further questions about infant sleep safety, or visit the American Academy of Pediatrics website.

Elizabeth Super, M.D.
Assistant Professor of Pediatrics
Pediatric Sleep Disorders Medicine Program
OHSU Doernbecher Children’s Hospital

5,000 books for 5,000 smiles

Andrew Herinckx

Imagine a child with a serious medical condition. Imagine that child and his family waiting for surgery. Preparing to undergo a medical procedure. Passing the time during recovery. Now imagine that child and family reading. Calming their minds. Trading their current reality for something magical. This is the power of a book.

Hi, my name is Andrew Herinckx, and I am a Boy Scout with Troop 618 in Beaverton, Ore. As part of a service project to earn my Eagle Scout rank, I worked to collect books to help children and families pass the time while in the hospital, or while recovering from a health crisis. My goal was to collect 5,000 books.

Boy Scout Troop 618, Beaverton, Ore., collects 4,000 books for Doernbecher.

My book drive included developing a theme – “5,000 Books for 5,000 Smiles” – posters and fliers to promote the book drive. I conducted the book drive in November at two local churches, a school and by doing neighborhood canvasing of more than 3,000 homes in the Beaverton area. I organized more than 60 volunteers to help over three weekends to leaflet neighborhoods, collect books and deliver them to OHSU Doernbecher Children’s Hospital and the Ronald McDonald House.

Boy Scout Troop 618 at OHSU Doernbecher.

In the end, we collected more than 12,000 children’s, youth and adult books.

Approximately 4,000 of the books were not usable/appropriate, but that left more than 8,000 that were in good condition to donate to the beneficiary organizations. I estimate that roughly 4,000 were given to OHSU Doernbecher and 4,000 to the Ronald McDonald House. Both organizations were thrilled to receive the book donations and were grateful for how the service project would help many families.

I appreciate the community support and am grateful to OHSU Doernbecher Children’s Hospital for allowing me to conduct this service project to help earn my Eagle Scout rank.

Andrew Herinckx
Troop 618
Beaverton, Ore.

Pack a nutritious school lunch that’s fun to eat!

Q. What can I pack in my son’s school lunch that is nutritious and fun to eat?

A. Sandwiches made on whole-grain bread with a lean protein like turkey ham or chicken are easy to make, affordable and convenient  to take to school.

Some children like lettuce or sliced cucumber on sandwiches, but many are picky about vegetables. Try offering small vegetables like baby carrots, cherry tomatoes and sugar snap peas to dip in a small amount of low-fat dressing.

If you’re unsure about portion size, choosemyplate.gov is a helpful resource. Enter your child’s age and get a guide on serving sizes.

One way you can save time while packing lunches is with a “Shop and Chop” day: When you get home from grocery shopping, clean chop and prepare vegetables in separate containers so packing lunches all week is a breeze.

Jennifer Kim, R.D.
Healthy Lifestyles Clinic
OHSU Doernbecher Children’s Hospital

Doernbecher Children's Hospital

Doernbecher Children’s Hospital

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