by Elizabeth Hymas, Naomi’s Mother
Chubbuck, Idaho

My ten-year-old daughter was in a tragic accident that left her entire face fractured from the bottom of her eye sockets down to her chin. One minute she was an active basketball-playing, sing/song-strumming, hot dog-eating, regular ol’ happy girl, and the next minute we were using Life Flight and relying on strangers to save her life.

We spent the next month in Primary Children’s Hospital in Salt Lake City, Utah. Naomi’s face and eyes were completely swollen. She suffered through multiple surgeries including a full face reconstruction. Her jaws were wired shut, and a tracheostomy was placed as well as a g-tube.

Will Music Therapy Help My Child?

After a couple of emotionally and physically draining days in the Intensive Care Unit, our nurse asked my husband and I if we would like to have Music Therapy visit Naomi. I was very hesitant. In my mind, I pictured a loud and disturbing band that would only worsen Naomi’s condition. Given all that had happened, I wanted to protect her from any unwelcome visitors. I was assured that we would be pleased by our experience. Very cautiously, I accepted.

A lovely girl entered Naomi’s room along with an acoustic guitar strapped to her back. We gently woke Naomi and whispered that she had company. Her eyes were straining as she tried to peek. Amanda, the music therapist, quickly grabbed a chair and rolled it close by Naomi’s bed.

Hope Returns

As I watched Amanda play and sing tenderly to Naomi, I noticed and felt something that we hadn’t experienced since the accident - Naomi smiled. She felt happy. Our lives had been turned upside down. As her mother, I felt weak, sick and had lost any optimism. But in that very moment there was light. We felt hope.

Naomi’s health improved as well as her musical abilities. Amanda listened to Naomi’s interests. She studied her learning style and was concerned for the overall well being of my daughter. Amanda even took her own personal time memorizing songs that Naomi requested. At one point Naomi said, “Mom, she is better than Taylor Swift!”

Naomi was released from Primary Children’s, but our friendship has continued. We visit Amanda every few weeks when we come back for doctor visits. We give her updates on life, and we always remember to sing a little.

Life After Tragedy

Naomi will continue to need surgeries this year. She is nervous, but we know Amanda, her Music Therapist, will be in the chair by the side of her bed singing her favorite songs.

Amanda inspired Naomi to purchase her own guitar, and Naomi even named her new puppy Maestro after Amanda’s last name.

Naomi was offered the chance to visit four different Idaho radio stations, and share her experience at Primary Children’s Hospital. She was asked the question, “What was your favorite part of the hospital?”

She replied, “Amanda, my Music Therapist.”

The stations then played the song that Naomi and Amanda wrote together- “Up High in a Tree.”

We are so grateful that Primary Children’s Hospital has Music Therapy in the hospital. The music was inspiring and gave the gift of hope to Naomi.

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Dr. Clark began his career at Primary Children’s and the University of Utah in 1996, and has contributed extensively to the progress and success of Primary Children’s Hospital over the past 20 years. He also holds adjunct professorships in the Departments of Obstetrics and Gynecology and Bioengineering. He has remarkable accomplishments as an innovator in clinical care delivery systems, population health research, and GME education. These include a regional pediatric care network, focused population management of children with complex medical conditions, and an innovative pediatric accountable care organization.

“It has been a privilege to work with Dr. Clark. He has been a true visionary of pediatric medicine for Primary Children’s, Intermountain Healthcare, and the entire nation,” says Katy Welkie, CEO of Primary Children’s. “His leadership, clinical expertise, strategic acumen, and dedication to our philosophy of ‘The Child First and Always’ makes Ed a truly one-of-a-kind physician and administrator. We look forward to continued collaboration with him in his new roles.”

Chris Maloney, MD, PhD, Named Interim Chief Medical Officer

Chris Maloney, MD, PhD, has been named as the interim Chief Medical Officer for the hospital and his name will be presented to the Primary Children’s Board of Trustees for final approval as the CMO at the end of January. Dr. Maloney has served as the Associate Chief Medical Officer at Primary Children’s since 2012 and is well prepared for the CMO role. In addition to practicing as a pediatric critical care physician, Dr. Maloney is the lead of the Primary Children’s Hospitalist group, and serves as the Chair of the Department of Medicine at Primary Children’s Hospital. Dr. Maloney is board certified in pediatrics and critical care medicine and earned a doctorate degree in Biomedical Informatics.

Dr. Maloney serves as the Division Chief for Inpatient Medicine within the Department of Pediatrics at the University Of Utah School of Medicine as well as an adjunct professor in Biomedical Informatics at the U of U.

“Dr. Maloney has been an integral part of the progress we’ve made in so many areas at Primary Children’s Hospital,” says Katy. “Chris’ expertise in medical informatics, his collaborative approach and his stellar reputation as a physician provide him with a unique perspective on leading us into the future. He’s a key part of our electronic medical record transition, and has been a mentor to many staff over the past 20 years. I am so looking forward to working alongside him in this new position.”

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Thanks to the leadership of Dr. Linda Book, a pediatric liver disease and transplantation Program was established at Primary Children’s Hospital in 1996 to address the needs of children in the West with liver disease. This year our team hit a milestone performing the 200th pediatric liver transplant. Having a program like this close to home is a big deal, especially when you consider that there are only twenty-five pediatric liver transplant programs in the entire country. While liver disease in children is rare, it is a serious condition, needing an entire team of specialists.

“What a privilege it has been to lead and develop this program with a dedicated, skilled, smart, compassionate team,” said Linda Book, MD. “It is indescribable to see a child, life-threateningly ill, smile only a few days after a liver transplant. Wow! 20 years and 200 transplants with 90% of children leading healthy lives! It brings me tears of joy when I think of the birthday parties, school proms, dance and piano recitals, sports awards, graduations, marriages, and becoming mothers and fathers.”

Pediatric Liver Transplant Program Highlights:

• Brings together experienced clinicians and surgeons, who actively participate in national research programs and initiatives.
• Provides transplantation for 12-15 children per year and continues to grow.
• Completed its 200th liver transplant in 2015.
• Serves as a regional referral center – providing care for Utah and adjoining states.
• Performs reduced-size, split liver, and living donor liver transplantation for very small babies, children, and teens. (The program has performed 27 living liver transplants to date.)
• Has excellent survival outcomes – comparable to other top transplant centers across the United States.

The collaborative nature of our program brings experts from the University of Utah and Intermountain Medical Center, affording families the benefits of consultation provided by a large group of national experts, while maintaining a personal level of care and focus on the patient and family.

Our program provides comprehensive care for children with liver disease every step of the way, from diagnosis, to transplantation, and follow up care. A multidisciplinary care team is in place to help patients and families navigate the complicated, overwhelming, and emotional process. Our team is dedicated, passionate, and will be there every step of the way. The team has pediatric-focused transplant physicians, transplant surgeons, transplant nurse coordinators, transplant assistants, child life specialists, social workers, pharmacists, and a transplant financial coordinator. It literally takes a village!

We are humbled to have had the opportunity to affect the lives of so many patients and families, and look forward to continuing to serve the children and families of Utah and beyond.

A life-saving transplant gives a child a second chance – which we have witnessed first-hand, 200 times.

Pediatric Liver Transplant Patient Spotlight - Meet Cathy

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Although the flu (or influenza) usually causes symptoms that make someone feel worse than symptoms associated with a common cold, it’s not always easy to tell the difference between the two.

Cold & Flu Symptoms Guide

The answers to these questions can help determine whether a child is fighting the flu or combating a cold:

If most of your answers fell into the first category, chances are that your child has the flu. If your answers were usually in the second category, it’s most likely a cold.

But don’t be too quick to brush off your child’s illness as just another cold. The important thing to remember is that flu symptoms can vary from child to child (and they can change as the illness progresses), so if you suspect the flu, call the doctor. Even doctors often need a test to tell them for sure if a person has the flu or not since the symptoms can be so similar!

Some bacterial diseases, like strep throat or pneumonia, also can look like the flu or a cold. It’s important to get medical attention immediately if your child seems to be getting worse, is having any trouble breathing, has a high fever, has a bad headache, has a sore throat, or seems confused.

While even healthy kids can have complications of the flu, kids with certain medical conditions are at more of a risk. If you think your child might have the flu, contact your doctor.

Treatment

Some kids with chronic medical conditions may become sicker with the flu and need to be hospitalized, and flu in an infant also can be dangerous. For severely ill kids or those with other special circumstances, doctors may prescribe an antiviral medicine that can ease flu symptoms, but only if it’s given within 48 hours of the onset of the flu.

Most of the time, you can care for your child by offering plenty of fluids, rest, and extra comfort.

And if the doctor says it’s not the flu? Ask whether your child should get a flu shot.

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No matter what winter activity you and your kids are enjoying, staying warm is important. Make sure to dress your children in layers that will keep them dry. Apply sunscreen to any exposed skin (including the ears!) so that the sunlight reflecting off the snow doesn’t cause a sunburn.

Safety Tips for Popular Winter Sports

Sledding

Flying down the hill is a great feeling, but sledding can be dangerous if you’re not careful. Make sure the sled is sturdy and easy to steer. Don’t use homemade sleds like garbage can lids, plastic bags, or pool floats—you can lose control too easily. Wear gloves and boots to protect your hands and feet and consider having your child wear a bike helmet to protect their head while sledding.

Be careful when choosing the hill and make sure it isn’t too steep, near a busy road, or covered with rocks and trees. Adult supervision is very important. Make sure kids take turns sledding down the hill and that the person sledding is out of the way before the next one takes off.

Ice-Skating

Whether playing hockey or ice skating, the most important thing is to skate only on safe and sturdy ice. Indoor ice rinks are safer than outdoor ponds or lakes. Be careful when skating outdoors because even if the ice looks strong it may not be able to hold a child’s weight.

If your child plays ice hockey don’t let them step out onto the ice without proper gear. This includes padding, and most importantly, the right helmet. Use only a helmet approved for ice hockey, not a football or bike helmet.

When skating for fun, be sure your kids skate in the same direction as the rest of the crowd. If they are going to try out a new figure skating move, be sure they watch where they are going and leave themselves plenty of room.

Skiing and Snowboarding

Before getting to the slopes, make sure you have the right equipment and that it fits correctly. Don’t use equipment that is too big, as it will make it difficult for your child to stay in control. Be sure kids wear ski boots, goggles and a helmet. Snowboarders will also need knee and elbow pads.

It’s a good idea to have your child take at least one skiing or snowboarding lesson. That way you can be sure they know the basic skills needed to stay safe. It’s also important to supervise kids and make sure they stay on trails appropriate for their skill level.

No matter what activity you choose, staying active and remembering these safety tips can make your winter great! Oh, and don’t forget to have a delicious cup of hot chocolate to warm up after your fun activities!

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“Dear Santa,

I have been good. How’s Mrs. Santa? How are the elves? Now, can we get to the list?”

He then proceeded to write a very long list of toys that he would like to see under the tree on Christmas morning.

Like my nephew, I’m sure that your kids have a pretty good idea of what they’d like to get this holiday season, but it’s important to keep safety in mind when shopping for toys. Each year, many children are treated in hospital emergency departments for toy-related injuries. Here are some general guidelines to keep in mind when shopping for toys.

Ten Tips for Choosing Safe Toys

1. Toys made of fabric should be labeled as flame resistant or flame retardant.
2. Stuffed toys should be washable.
3. Painted toys should be covered with lead-free paint and art materials should say non toxic.
4. Crayons and paints should say ASTM D-4236 on the package. This means they’ve been evaluated by the American Society for Testing and Materials and found safe.
5. Think large. Make sure all toy parts are larger than your child’s mouth to prevent choking or other injuries. Be sure if you are buying a small toy for an older child that it stays out of the reach of younger children.
6. Avoid toys that are too loud and could cause damage to your child’s hearing.
7. Stay away from toys with sharp edges or points and toys with cords and strings. The cord can become wrapped around a child’s neck, creating a strangulation hazard.
8. Electric toys should be UL approved. Check the label to be sure.
9. If you buy your child a bike, scooter, skateboard or other toy they can ride, make sure you also get them a helmet and the proper protective gear.
10. Do not buy toys that contain powerful neodymium magnets. These can cause serious injury and death if ingested. It’s also important make sure that if a toy contains small “button” batteries, that they cannot be easily removed from the toy and swallowed.

It is also important to make sure the toy you buy is appropriate for your child’s age. Many toys have labels on them with a suggested age range but use your best judgment and consider your child’s temperament, habits, and behavior when you buy a toy. You can check the Consumer Product Safety Commission’s website for the latest information about toy recalls or call their hotline at (800) 638-CPSC to report a toy you think is unsafe.

When it’s time to “get to the presents,” I hope that the children in your life will find fun and safe toys under the tree this year.

Safe Toys Infographic

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by Elizabeth Joy, MD, MPH, Michelle Hofmann, MD, MPH, & Steven Bergstrom

It comes as no surprise to anyone living along Utah’s Wasatch Front that our air quality is compromised for days to weeks come wintertime. Our murky air is referred to as an “inversion” as it is the reverse of a normal air pattern (i.e., cooler air above, warmer air below). During inversions, the Wasatch Front valleys and their surrounding mountains act like bowls, trapping a dense layer of cold air under a layer of warm air. The warm layer acts much like a lid, and any pollution produced during an inversion becomes trapped in the cold air near the valley floor (Figure 1). This warm inversion air layer is usually displaced when a strong storm system blows in, releasing lower polluted air, and restoring air quality to healthier levels.

Children with Acute Respiratory Problems Face a Higher Risk During an Inversion

Poor air quality is unhealthy for everyone, but some groups are more susceptible than others. Children, especially those with asthma, are considered at high risk because they spend more time playing outdoors, their bodies are still developing, and they breathe more rapidly than adults, inhaling more air per pound of body weight. The elderly and those with acute or chronic respiratory problems, or vascular diseases such as heart disease or stroke, are also at high risk. Given that nearly one third of Utah’s population is younger than 18 or older than 65, in addition to the more than 200,000 Utahns with asthma, and 500,000 with heart disease, addressing air quality is indeed a public health imperative.

The primary contributor to our poor air quality and its impact on health during an inversion is fine particulate matter (PM) pollution. Often referred to as PM2.5, the 2.5 refers to the size of the particle (2.5 micrometers per cubic meter). Figure 2 provides some perspective on the size of these particles-which is 30 times smaller than a human hair!

Monitor Air Quality and Protect Your Family’s Health

A growing body of evidence suggests that even on some of Utah’s best air quality days, there are pollution sources that may be impacting health. In particular, living, working, and attending school within close proximity to major roadways results in exposure to automotive emissions that are a major source of PM2.5 and other harmful air pollutants. Considering how you can prevent or reduce exposures to vehicle exhaust is a good step everyone can take to protect themselves and their children from some of the harmful effects of air pollution. Avoid idling your vehicle, exercise outdoors away from major roadways, and for schools located near highways, schedule outdoor activities outside of peak rush hour times.

Other ways to protect ourselves and our loved ones include “reading the air.” Much like checking the temperature to know how to dress for the day, look at the current air quality conditions to know if you and your family need to use extra caution with outdoor activities that increase pollution exposures. Useful tools for monitoring air quality can be found on www.airnow.gov or www.airquality.utah.gov, or UtahAir, an app that can be downloaded onto your smart phone for real time, local air quality information. These tools also provide exposure recommendations for people with and without sensitive conditions that may be exacerbated by poor air quality. First and foremost, always listen to your body, and consider if air quality may be influencing you or your child’s health, by monitoring for symptoms like increased cough, chest tightness, wheezing, or difficulty breathing after exposures to air pollution.

Personal Responsibility in Air Quality Improvement

In addition to protecting our health, we all have a responsibility to improve air quality in Utah. Utah’s Clean Air Action Team (CAAT) published a number of recommendations aimed at improving our air quality. Some of these recommendations are aimed at policy makers such as access to lower sulfur gasoline, and investing resources to expand public transportation.

However, there are several recommendations that are actionable at an individual or household level. These include reducing both wood burning and total miles driven per person during inversion periods, and installation of ultra-low nitrogen oxide water heaters. According to the CAAT report, the emissions from heating 1 home with wood burning as the sole heating source is equivalent to emissions from 200 homes heated with natural gas in terms of fine particulate matter (PM2.5). Be a part of the solution, by doing all that you can to reduce your own contribution to Utah’s poor air quality.

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I’d invite you to think really BIG on this #GivingTuesday by supporting a cause for which I’m incredibly passionate about – childhood cancer. This disease affects more than 16,000 children a year. It could be your daughter or a grandson; your son’s best friend or a girl in your congregation. Childhood cancer is a BIG deal because it affects all of us. I care so much about this because I was one of those children.

When I was 15 years old I was diagnosed with Hodgkin’s Lymphoma – by my own father. Can you imagine? His diagnosis was confirmed by Dr. Edwin Forman, who became a hero and mentor to me as I pursued medicine as a profession.

Inspired by the compassionate care I witnessed, I was drawn to treating childhood cancer. I ultimately became a pediatric oncologist and genetic researcher. Not only do I want to improve cancer treatments, but I want to stop kids from getting cancer altogether. Insights can come from the strangest places, and little did I know a BIG insight would come from one of the BIGGEST land mammals on the planet – the elephant.

In the summer of 2012, I was attending an evolution and medicine conference and learned that elephants rarely develop cancer and this may be because they have extra copies of the gene called TP53. I was intrigued because I care for children with Li-Fraumeni Syndrome, a rare condition where they are missing TP53 and have nearly a 100% lifetime risk of cancer. This was an “aha” moment for me because I realized we should focus more on cancer resistance instead of just cancer risk.

I immediately wanted to collaborate with the speaker at the conference, Dr. Carlo Maley. We wanted to understand how these extra copies of the TP53 gene, known as the “guardian of the genome,” could possibly prevent cancer in elephants, and maybe one day in humans, too! We started working with Utah’s Hogle Zoo to get regular elephant blood to study and do functional DNA repair experiments. We also partnered with the Ringling Bros. and Barnum & Bailey Circus to get more diverse samples and build a productive partnership with their Center for Elephant Conservation.

You might have heard the BIG news last month that made the cover of Newsweek magazine about how this research with elephants could help us in our battle to end childhood cancer. We have not found the cure to cancer, but we think we’ve discovered the mechanism for how elephants are protected from cancer. We want to work as hard – and as fast – as we can to see if we can apply this discovery to humans. One child with cancer is one child too many!

This research is expensive and requires significant philanthropic funding. That’s where your donation for #GivingTuesday can help. I hope that knowing you could make a BIG difference by supporting this research will inspire you to give. Your support can help us understand and apply how the natural resistance elephants have to cancer could lead to new treatments for kids. I’m eager to learn what 55 million years of elephant evolution can teach us about preventing and eliminating cancer in our children.

Please help me by giving BIG to this important cause on #GivingTuesday.

>>Donate Today<<

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At a recent training day for a new group of Spiritual Care Volunteers, I invited a panel of parents whose children have been cared for at Primary Children’s. Several of these individuals serve on our Family Advisory Council, providing a much needed patient and family perspective on many of our programs and initiatives. I knew they would have valuable lessons to pass on to my volunteers, but by the end of the hour they spent with us, I was amazed at what they said.

Life Lessons from Caregivers

One mom has a son whose list of genetic anomalies is so long that she claims with tears in her eyes: “There’s no one else like him in the world.” His condition constantly stumps the leading medical experts, which can sometimes prove immensely challenging for his parents. “One day, I was just so frustrated that I ran out of the room angry at God and yelled at him ‘Why are you doing this to us?’ Then I heard a voice as clear as can be say to me, ‘This is not about you. It’s about his journey with me.’ And I’ve never been angry or resentful since.”

Another set of parents described how their son was born more than 20 years ago with a severe medical condition. He was never able to talk, walk or take care of himself in any way, so he required round-the-clock care and supervision. He had died just a few months ago, but instead of feeling relief that their caregiving tasks were over, they were at a loss for what to do now. “We have other children and 6 grandchildren, but the hole in our lives is immense and we don’t know how to fill it,” the husband said. Then his wife shared a treasure of advice. “Every moment you have with these children is exquisite, even the messiest and most boring of tasks. You don’t know how exquisite until they are gone,” she told us, her eyes bright with tears.

Gratitude is Hard Work

One of my favorite authors, Henri Nouwen writes this about the spiritual work of gratitude:

To be grateful for the good things that happen in our lives is easy, but to be grateful for all of our lives – the good as well as the bad, the moments of joy as well as the moments of sorrow, the successes as well as the failures, the rewards as well as the rejections – that requires hard spiritual work. Still, we are only truly grateful people when we can say thank you to all that has brought us to the present moment. As long as we keep dividing our lives between events and people we would like to remember and those we would rather forget, we cannot claim the fullness of our beings as a gift of God to be grateful for. Let’s not be afraid to look at everything that has brought us to where we are now and trust that we will soon see in it the guiding hand of a loving God.

My Spiritual Care Volunteers and I learned that lesson from the words of those amazing parents. For them and for the example of all who provide love and care for children in such difficult circumstances, let us truly give thanks.

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Patients celebrate 10 years of living with Type I Diabetes

Last week, 21 patients and their families gathered together to celebrate an important milestone–their 10 year anniversary of living with Type 1 Diabetes.

In Type 1 Diabetes Mellitis, formerly called Juvenile-Onset Diabetes, the pancreas does not make insulin. This means the body cannot use glucose as a source of fuel. It is a chronic disease that must be managed through meticulous monitoring of insulin, diet, and activity.

This diagnosis was a death sentence until the early 1920s when commercially available insulin was introduced. Through continued improvements in insulin technology, patients can now expect to live long and healthy lives–albeit challenging.

In recognition of the constant challenges these patients face, our Diabetes Program together with Lilly Diabetes held a celebration to honor their respective journeys.

Fighting Illness with Bravery

Brayden Butters speaks about overcoming obstacles.

“You all are so brave,” said Mary Murray, Director of Primary Children’s Diabetes Program. “You take Diabetes with you everywhere you go.”

Brayden Buttars, a high school senior and longtime patient, also mentioned bravery as an important tool in taking on his disease. Brayden was diagnosed just before his fifth birthday and has gone on to become a 4.0 student, rugby player, accapella singer, and ballroom dancer at Herriman High School. He said that although Diabetes could be used as an excuse not to live life to the fullest, “you can never let it get in the way.”

A Parent’s Journey with Diabetes

The event also honored the parents’ journey. Rita Sutton, whose son was diagnosed at just 17 months old, spoke about the challenges she faced early on. She spent four days in the hospital with Ethan learning how to count carbs and prepare correctly dosed food. She thought, “I don’t know how we’re going to survive this.”

In the beginning, she said she only knew how to correctly dose three different meals. An important realization for her was that she wasn’t going to “get it perfect.” She also realized that her view of Ethan’s disease would inform his own perception. It was then that she started to appreciate the “highs and lows” they experienced. Most importantly, she said, they now recognize the anniversary of Ethan’s diagnosis as a celebration of his ability to live a healthy life. She added, laughing, that they usually celebrate with cake–and insulin.

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