Monthly Archives: February 2014

Five Question Friday: Dr. Julie Lesser

It’s National Eating Disorder Awareness Week, so we caught up with Julie Lesser, MD, and medical director at Children’s Center for the Treatment of Eating Disorders to learn more about her role.

Julie Lesser, MD, is medical director at Children’s Center for the Treatment of Eating Disorders.

How long have you worked at Children’s? 

I arrived at Children’s in 2011 to start the eating disorder program. It was a high point in my career, and it just keeps getting better.

It’s National Eating Disorder Awareness Week. Tell us about the eating disorder program at Children’s.

The top priority of our program is to get treatments that work into the hands of patients and families. At Children’s there is a warm, positive team of highly specialized staff including: nurses, dieticians, child life associates, physical therapists, hospitalists and other specialists to help with medical issues connected to malnutrition. We see patients of all ages, including very young children, and are able to individualize care and admit patients up to college age to our program on the sixth floor of Children’s — Minneapolis. We have a separate unit for adults at Abbott Northwestern Hospital.

If you could make families aware of anything about eating disorders, what would it be?

The best way to prevent any problems with eating or weight control is to do what we call regular eating with a pattern of eating meals and snacks throughout the day, using flexible guidelines and eating enough to stay in a healthy weight range.

When you’re not at work, how do you spend your time?

I like to hang out with my family, listening to music, watching movies, walking or jumping on our trampoline. Mostly I am bossed around by the two youngest members of our family, our Jack Russell puppies, Phoebe and Phillip. My secret wish is to write a children’s book called “The Problem Solving Child,” in which our heroine faces many challenges, and a few villains, and finds surprising resources within and around herself.

If you could travel anywhere in the world, where would you go and why?

Some place warm, where I could wear flip-flops all day long.

For more information on eating disorder treatment at Children’s, check out our recent blog post on what you may not know about these serious illnesses.

Children’s at the Capitol: Child health and wellbeing a big focus this year

(Kristin Marz, kristinized / Flckr)

Briefcases and business suits are lining the halls of the Capitol once again as the legislature reconvened for the 2014 session this week. The governor and legislative leaders have been promising a shorter, more focused session, but with all 134 house members and the governor up for re-election in November, legislators will be working on legislative successes they can take back to their districts.

This year, Children’s will be supporting several policies that impact the health of kids in our state.

School lunches
Recently, the internet exploded with stories about a school in Utah that was denying children lunches who couldn’t pay their lunch bill. Not only were they refusing to feed the children but they were throwing lunches away right in front of them. Unfortunately, amidst the uproar and outrage we learned that many schools in Minnesota do the same. A recent report from Legal Aid showed that 15 percent of Minnesota school districts report that their policies allow lunchroom staff to refuse hot meals to students who can’t pay.

As the state’s leading provider of health care for children, we know this is unacceptable. Children need food to grow and to learn. And they shouldn’t be punished or stigmatized because their family has limited resources or because someone forgot to pay a bill.

Children’s is part of a coalition working to put a stop to this practice and will advocate providing all students with access to a healthy school lunch. With an estimated cost to the state of $3.5 million, the costs of not providing children with adequate nutrition are far greater.

Newborn screening
Since its inception over 50 years ago, Minnesota’s newborn screening program has saved the lives of over 5,000 babies. But once a nation-leading program, recent legislative changes have begun to put Minnesota children at risk.

Between 24-48 hours after birth, blood is taken from a baby’s heel and tested for over 50 congenital conditions including cystic fibrosis and sickle cell disease; conditions that often are asymptomatic at birth but that once detected can be treated. Prior to 2013, the test results and data were stored so that at any time they could be accessed for additional testing. Unfortunately, in 2013, changes were made so that test results and blood spots would be destroyed after two years and 71 days, respectively. This means that millions of children’s results are now being destroyed.

We will be working to restore the newborn screening program to ensure that parents and children have the option and ability to save their test results for future use. You can read the stories of just a few of the children that have been saved by the program.

Mandatory flu vaccines for health care providers
This flu season, Children’s has seen over 520 confirmed cases of the flu. For some patients, it’s a quick diagnosis and visit. For others, it can mean an overnight stay, admission to our ICU, or even requiring ECMO (heart-lung bypass) treatment. Children and those with immune-suppressed systems are the most vulnerable, and for a very small few, they may never survive.

We know that a hospital should be the place where people and children go when they are sick, not to become sick. Being protected from the influenza virus is one small but important step in doing that, so Children’s is supporting a bill that would make flu vaccines mandatory for health care providers.

The good news is that Children’s is already a leader among hospitals. Ninety-three percent of our employees receive their vaccination. But we can do better and so can many other hospitals.

Early childhood education scholarships
Healthy children are learning children. Research shows that investment in high-quality early childhood education improves health outcomes, socio-economic status and school achievement. Every year, over 50 percent of new kindergartners are not prepared with the skills necessary to succeed in school.  As a result, many children lag behind their peers never able to catch up.

Our health care providers know how crucial education and developmental opportunities are for children ages 0-5. That is why we have joined MinneMinds, a coalition of non-profits, education organizations, health care providers, and businesses, that are devoted to assuring access to high-quality early education programs for our early learners most in need.

Photo by Kristin Marz (ristinized on Flckr)

What you may not know about eating disorders

You may think you know a lot about eating disorders — that they’re caused by the social pressure to look like models, or that they’re all about weight loss and excessive exercise — but there’s more than meets the eye when it comes to identifying and treating these serious conditions.

In recognition of National Eating Disorder Awareness week, our team from Children’s Center for the Treatment of Eating Disorders clears up some common misconceptions about anorexia nervosa, bulimia nervosa and binge-eating disorder as well as provides signs that may indicate that your child or teen is suffering from an eating disorder.

Full recovery can take months or years but is possible. Many individuals go on to be free from their eating disorder, while others may have residual symptoms or remain at risk for relapse. (iStock photo / Getty Images)

Myth No. 1: People choose to have this illness.

Eating disorders develop as a result of complex genetic, psychological, social or environmental factors. They’re serious and potentially life threatening, and serious physiological (e.g., cardiac arrhythmias, kidney failure, death) and psychiatric (e.g., depression, substance abuse, suicidality) costs can accrue. In fact, among mental health diagnoses, eating disorders have the highest mortality rate. Someone doesn’t choose to have an eating disorder, just as people don’t choose to have cancer.

Myth No. 2: Eating disorders are caused by families.

Families do NOT cause eating disorders. This is a common myth that must be emphasized. There is no evidence showing that parenting styles or family dynamics play a role in the onset of eating disorders. Eating disorders can affect anyone.

Myth No. 3: Eating disorders are all about food.

Extreme or unhealthy dieting behaviors are associated with eating disorders, but eating disorders simply are not about food or controlling eating. In fact, people with eating disorders may either have a false sense of or complete loss of control over their eating. The core features of eating disorders are theorized to be the over-evaluation of weight and shape.

Myth No. 4: Only females are affected by eating disorders.

Eating disorders can affect anyone, males or females, across all cultural and socioeconomic backgrounds, and among all age groups ranging from young children to the elderly. However, eating disorders predominantly target females and typically strike during adolescence and young adulthood.

Myth No. 5: You have to be thin to have an eating disorder.

It is impossible to know whether a person has an eating disorder just by looking at him or her, as people with eating disorders can appear thin, normal weight or overweight. Regardless of how a person appears or how much a person weighs, he or she might have an eating disorder and be engaging in harmful eating disorder behaviors.

Myth No. 6: People with an eating disorder can change but choose not to.

Although people with eating disorders may resist treatment or push family or friends away if they try to help, this is just a symptom of his or her illness. They also cannot choose to “just eat.” Eating disorders are serious mental illnesses that require professional treatment. The sooner a person with an eating disorder gets help, the better his or her chances are of recovering. Fortunately, we have effective therapies to treat eating disorders. At Children’s Center for the Treatment of Eating Disorders, our clinicians are trained and have experience in delivery of these evidence-based treatments.

Myth No. 7: Once someone is treated for an eating disorder, he or she is cured for life.

Full recovery can take months or years but is possible. Many individuals go on to be free from their eating disorder, while others may have residual symptoms or remain at risk for relapse.

How to recognize an eating disorder

As illustrated above, eating disorders are complex. They may begin with a well-intended attempt to “get healthy” or “eat healthier.” Eating disorders also may look different for each child or adolescent. Some of the following may be warning signs that your child or adolescent is developing or has developed an eating disorder.

Physical signs:

  • Rapid or excessive weight loss
  • Dramatic weight gain
  • Development of fine facial or body hair
  • Lack of energy
  • Dizziness or fainting
  • Feeling or complaining of being cold
  • Constipation
  • Vomiting
  • Dry skin
  • Hair loss
  • Dental erosion
  • Calluses on knuckles from self-induced vomiting
  • Decreased heart rate
  • Absent or irregular menstruation in females

 Cognitive signs:

  • Belief that he or she is “fat”
  • Afraid of gaining weight or becoming fat
  • Afraid of being able to stop eating
  • Denies having a problem or an eating disorder
  • Obsesses about body image, appearance or clothing
  • Difficulty concentrating
  • Depression or withdrawal
  • Irritability
  • Self-worth appears strongly related to weight or shape
  • Obsessiveness 

Behavioral signs:

  • Refuses to eat normal types or amounts of food
  • Eats large amounts of food in a short period of time (binge-eating)
  • Self-induces vomiting
  • Over-exercising
  • Takes laxatives or diet pills
  • Hoarding, hiding or throwing away food
  • Engages in food rituals or has food rules, including calorie limits, measuring food or rules about what he or she should or shouldn’t eat
  • Categorizes food into “good” and “bad”
  • Refuses to eat “unhealthy” or “bad” foods
  • Eats only certain foods or only eats at specified times
  • Often says “I’m not hungry”
  • Makes excuses to avoid eating at mealtimes
  • Withdrawal from friends or activities
  • Eating in secret so that you are not aware of what he or she is eating

If you suspect that your child has an eating disorder or you have noticed some of these symptoms, it’s important to seek professional help as soon as possible. Trust your instincts as parents. Don’t wait until things get worse.

We encourage you to educate yourself and ask questions. We also encourage you to contact the Center for the Treatment of Eating Disorders at Children’s to schedule an appointment for your child to have a thorough evaluation and to explore treatment options. Contact us at 612-813-7179.

Preparing yourself for your child’s surgery

Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital. (2013 file / Children's Hospitals and Clinics of Minnesota)

By Jeri Kayser
Child Life Specialist

When a child needs surgery, the focus of preparation usually is with the child.

That makes sense.

We want our kids to understand what’s about to happen so they aren’t overwhelmed or traumatized by the event. They’re kids, after all, and we adults have to deal with it, right? Or, perhaps, wrong.

After 30 years as a Child Life specialist, 20 of those in surgery, I have observed that the first person to be well-prepared should be the parent. Children respond most directly to how their parents are reacting emotionally to the event to gauge their own response.

Imagine you are 3 years old and about to get your tonsils out. This is scary because it’s hard to understand what’s about to happen and frustrating you can’t control it. Age-appropriate information and a supportive staff are helpful, but if you notice your mom or dad is anxious, nothing else matters. You got the message: You should be anxious, too, especially if your parents are trying to suppress their emotions – that is even scarier to a child. You can tell that they are upset, but you don’t know why, so you imagine the worst. If you’re a teenager, you might pick up on the message that we don’t talk about this and it will upset your mom if you bring it up to her. It’s hard to deal with the unspoken stress of your family as well as your own fears and concerns.

When I’ve observed kids coping successfully with the challenges of a health care experience, I have noticed that their families have prepared themselves with some or all of the following techniques:

Seek information

Find out what is happening and why. What are the expected outcomes?  What types of things can you as a family plan on doing to foster your child’s healing?

Attend a pre-admission tour

On our hospital’s website there is helpful information about surgery and how to sign up for a tour. Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital.

Make a list

Write down a list of questions to bring to meetings with health care providers. I remember one family kept an ongoing list in their kitchen for anyone to write down questions, and they all contributed, even the siblings. Everyone had a say, and the questions helped everyone feel a part of the event. Knowledge helps you be in control and having specific tasks you can do to support your child in his or her recovery provides focus and direction.

Be honest with your emotions

As a parent, our job is to love and protect our kids and guide them towards being an independent adult. It can be overwhelming to have to make decisions for your child that includes any potential discomfort since we so desperately want to keep him or her safe from life’s struggles, but learning to deal with life’s struggles is what helps kids learn to be independent. We also carry with us our own memories and experiences with health care that may help or cloud our emotional response to our child’s experience. It helps to pay attention to where your emotions about surgery differ from your child’s. You each get to own your own perspective.

Kids do best when we are honest with them. When you label your emotions and show your child what you’re doing to help yourself, your child gets to experience some phenomenal role modeling on how to cope with challenging situations.

“I am sad that your tonsils need to come out, but I am glad that the doctors can fix this and soon you will be able to breathe better at night when you’re sleeping,” a parent can say. “Let’s think of some fun things to do while you are healing!”

Take care of yourself

You know yourself best. Helping your child through the experience of surgery can be exhausting. Think about what will help you be in your best place. Whom can you call on for support? Even small favors like having someone else pick up your other kids from school can be a great stress reducer.

Plan on something nice you can do for yourself while waiting for your child’s surgery to be done or when you get home. This also can help you and your child focus forward and be reminded of the time-limiting nature of the experience. It won’t last forever, and soon you’ll be looking back on this adventure.

Cut yourself some slack. There is no perfect person, so there can be no perfect parent. Your effort is what your child will notice and appreciate.

We grow as individuals and we grow as a family when we figure out what works best for us to deal with life’s challenges. This knowledge is precious and affirming and gives us all the more strength to deal with the next adventure.

Jeri Kayser is a Child Life Specialist at Children’s Hospitals and Clinics of Minnesota.

Mindfulness for stress relief

By Leslie Partin

Whether you’re a busy, working parent or a teen trying to balance a full social calendar and school, life can be stressful at times. Mindfulness, otherwise known as mindful meditation or mindfulness-based stress reduction (MSBR), is a tool any one of us can use as we navigate through the demands of our days.

The basic tenet of mindfulness is paying attention to the present moment. So much of the time we’re thinking ahead to the next task or mulling over something that happened in the past. For example, have you ever driven past the exit you intended to take, only to realize you missed it because you were thinking of something else? When we are caught up in our thoughts, we miss what is happening around us like that missed freeway exit.

Our minds are powerful, and we can harness that power to help us manage difficult experiences and distressing (or afflictive) emotions. When we are in the midst of a strong emotion or physical sensation like anger, sadness, disappointment or physical pain, it can feel like things will never get better. But if we’re able to step back and observe our distress, we may notice that it changes, ebbs and flows. Noticing and recognizing that the intensity varies, whether it’s an emotion or physical sensation, offers hope and reassurance that it won’t always be so hard. And when we focus on what we’re experiencing right now, instead of what’s going to happen — “I don’t want to have a headache at the dance,” “I don’t want to be stressed out at my child’s game,” etc. — then we don’t add the additional suffering of anticipation or worry. We suffer when we focus too much attention on what may happen in the future.

Mindfulness doesn’t mean trying not to think or making one’s mind blank. Instead, mindfulness teaches us to watch our thoughts, observe them while not attaching to them. Many teachers suggest visualizing thoughts as leaves floating down a stream or as clouds drifting by in the sky. Practitioners of meditation say that having a regular “practice” — a time set aside to practice meditation — allows us to develop our capability to be mindful in times of distress. It’s like building our mental muscles in the same way we build physical muscles by lifting weights or working out. Committing to a meditation or mindfulness practice helps us develop those muscles so we have the ability to use them when we need them most.

Neuroscience studies show us that the brain develops neuro-pathways as a result of our thinking habits and patterns. Similar to the way a trail through the woods is developed by animals and people following the same path over and over, our neuro-pathways, or thought habits, are made as we repeatedly take the same path of worry, fear, joy, happiness, etc. Mindfulness is one technique we can use to help form new neuro-pathways or mental habits. When we practice mindfulness we increase awareness of all of our thoughts and emotions, the positive as well as the afflictive ones. We then can choose which thoughts, emotions and sensations we want to focus on and nurture, and of which ones we want to let go. Remembering that we have this choice can help us cope when we hit stressful times.

If you’re interested in learning more about mindfulness, here are few links that can help you and your family get started (the first six links are centers that are located in the Twin Cities):

Children’s Integrative Medicine Program has medical providers that work with children to teach relaxation techniques that can include the use of mindfulness. These strategies are very helpful for chronic conditions such headaches and abdominal pain or problems with sleep and anxiety.


 [1] Jon Kabat-Zinn developed Mindfulness Based Stress Reduction programs in Massachusetts and has several books and CDs, which provide a good starting point. “Everyday Blessings” is his book on mindful parenting, with Myla Kabat-Zinn.

Leslie Partin is a social worker at Children’s Hospitals and Clinics of Minnesota.

Getting enough Vitamin D, all year long

By Molly Martyn, MD

Getting enough Vitamin D is an important part of staying healthy. Vitamin D helps with calcium absorption, and thus is a critical part of how our bodies make and maintain strong bones. Research shows that it also plays a role in keeping our immune systems healthy and may help to prevent certain chronic diseases.

Many of us get our Vitamin D from the sun and from drinking milk, but families often wonder how to help their children get enough Vitamin D to meet daily requirements.

The American Academy of Pediatrics recommends that infants receive 400 International Units (IU’s) per day of Vitamin D. For children older than one year, the recommended amount is 600 IU’s per day.

Vitamin D is found in a number of foods, some naturally and some through fortification. Foods that are naturally high in Vitamin D include oily fish (such as salmon, sardines, and mackerel), beef liver, egg yolks, mushrooms, and cheese. Below are some estimates of Vitamin D levels (per serving) of a variety of foods.

TYPE OF FOOD IU’s of VITAMIN D PER SERVING
Salmon, 3.5 ounces 360 IU’s
Tuna Fish (canned), 1.75 ounces 200 IU’s
Shrimp, 4 ounces 162 IU’s
Orange Juice (Vitamin D fortified), 1 cup 137 IU’s
Milk (Vitamin D fortified), 1 cup 100 IU’s
Egg, 1 large 41 IU’s
Cereal (Vitamin D fortified), ¾ cup 40 IU’s
Shitake mushrooms, 1 cup 29 IU’s

All infants who are breast fed (and even many who are formula fed) should receive a daily Vitamin D supplement.

In addition, the majority of children do not eat diets high in foods containing Vitamin D. Thus, a Vitamin D supplement or multivitamin may be an important part of helping them meet their daily requirements. Talk to your child’s health care provider about recommendations.

The National Institutes of Health have more information on Vitamin D on their website, including Vitamin D recommendations for all age groups. 

Five Question Friday: Tanya Bailey, MD

Tanya Bailey, MD, has had some interesting jobs before she became a pediatrician at Children’s. Learn more about how she found her calling to become a doctor in this week’s Five Question Friday profile.

Describe your role. I have been a pediatrician in the Minneapolis General Pediatric Clinic since July 2012. I work full time in the clinic and also see newborn infants at the Mother Baby Center.

What drew you to Children’s? I didn’t come into medicine via a traditional path. In fact, it wasn’t even on my radar until I was almost 30 years old. Neither of my parents went to college and I don’t think a lot was expected of me academically, though the expectation that I work hard was always there. I had my first job at age 12, was employed most of the time after that, and supported myself in my late teens. I had many different jobs in my life before becoming a doctor: berry picker, cook, office assistant, accountant, gardener, Zamboni driver, resident assistant, personal care attendant, teacher’s aide and lab tech, to name a few. I was really proud at one point to say that I had a license to drive both a Zamboni and a Bobcat skid steer loader. I’ve lived in four different states across the northern part of the U.S. and my most unusual living situation was when I lived in a cabin with no running water and an outhouse when I was in college in Alaska.

What do you love most about your job? When I began looking for a job after my pediatric residency, I knew I wanted to work in a city with a diverse patient population and to have the opportunity to take care of patients in both inpatient and outpatient settings. I was initially looking to move back to the West Coast where I grew up, but told myself that if a position ever opened up at Children’s I would apply. I had enjoyed my time here as a Child Life volunteer before I started medical school and also had two wonderful rotations at the hospital as a medical student. I very much admired and was inspired by the physicians I worked with as a student and always thought they’d make great colleagues (I was right, by the way). I enjoyed the general environment at the hospital with the focus on children and their families and the diversity of the patients and the community. Now that I’m here, I love the variety that every day brings. I am never bored and I get to work with great colleagues, patients, and families. I enjoy developing relationships with families, watching their children grow up, and taking care of subsequent children.

How do you spend your time outside of work? Outside of work I enjoy working on home improvement projects both in the house and in the yard, reading (I love young adult and teen novels and get many great recommendations from my patients), cooking, and I’ve recently taken up soccer.

If you weren’t working in medicine, what do you think you’d be doing? If I wasn’t in medicine, I think I would be doing something involving gardening or cooking. I’m not sure, though. That’s what I’d do now because those are things I enjoy as hobbies. I’m not certain what I’d be doing if I’d never pursued medicine. I’d need a job that kept me busy, was challenging, and didn’t involve spending too much time sitting in one place or in too many meetings.

Gavin’s story: An update by Nicole Pierson


By: Nicole Pierson

As we approach Gavin’s 17th surgery, we do so with sadness, hope, determination and caution

Gavin Pierson is a 7-year-old patient at Children’s Hospitals and Clinics of Minnesota. His journey began on April 7, 2012 after an unexpected brain tumor diagnosis. Gavin is a tough, brave boy with hopes and dreams. These dreams start with one day winning the battle against his brain tumor, who he has named Joe Bully.

Gavin’s journey has been filled with countless ups and downs. Last year, we hit an “up” when Gavin was granted compassionate use of a drug called Palbociclib, which is made by Pfizer. He’s the only child in the U.S. using the medicine, and it has stopped the progress of his fast-growing, benign tumor.

Then in October, Gavin was the first patient in the Upper Midwest to undergo a laser ablation surgery at Children’s for his brain tumor. He’s the only person in the country to have a mature teratoma successfully ablated with this laser technology.

After the procedure, Gavin did well and quickly bounced back. He was on the mend and doing well until Nov. 20, when we brought him into the ER. Gavin had complained of tingly feelings in his arm and leg along with sudden speech problems. The right side of his face was paralyzed, and he suddenly couldn’t speak coherently. Once in St. Paul, a CT scan showed no abnormalities, and Gavin was admitted overnight. The next morning, an MRI showed a serious and extensive blood clot in many veins in his head. The clot could have caused a stroke, bleeding, coma or death. He was put on blood thinners and remained hospitalized for almost two weeks.

Gavin was tested for a blood disorder that might be causing the clots, but nothing was found. The clot is not believed to be a result of the laser procedure, but instead has become a separate hurdle that has developed slowly over time. Given that this clot is the second Gavin’s had in two years, he will likely be on blood thinners for a long time.

After gaining strength, energy and improving his physical abilities, Gavin required steroid treatment to decrease the blood clot swelling. While the steroids are necessary, they have so many negative side effects, including weight gain, muscle weakness and mood change.

As we fast-forward to today, we’re thrilled to share that Gavin has improved significantly and is ready to continue his battle against Joe Bully with another laser ablation procedure. This amazing technology allows the surgeon to repeat treatments without a limit. Our hope is that this surgery will knock the bully down further than before. Of course, our hope is that it will eliminate the last of Gavin’s brain tumor, but there are no promises. Gavin’s medical team can’t guarantee this will be the last as Gavin is the first for so many things.

Although it would be nice to have a predictable disease, having options and hope is better than the alternative. A year ago, our hope was slipping away. Today, we have a medicine and a surgical technique that complement each other. And we are thankful for the amazing care Gavin has had and continues to receive at Children’s.

If you can believe it, Gavin is excited for surgery. He wants to win this epic battle against Joe Bully and he has an amazing army supporting him. He inspires everyone around him, and he has inspired us as his parents to fight harder even when it seemed we had no options left. He’s overcome obstacles that only superheroes could have toppled and he’s amazed his doctors and care team over and over again. Gavin’s inspiration drives all of us to continue fighting and never give up.

As we approach Gavin’s 17th surgery today, we do so with sadness, hope, determination and caution. Sadness because we never imagined this life for our son – who was perfectly healthy for almost six years; hope that this procedure will cure him and give hope to other families in the present and future; determination to beat Joe Bully; and caution because we have to tread carefully on this journey, making all the right moves and not losing sight of our goal.

This is our story. Thank you for being a part of it.

Living with congenital heart disease: One man’s “game plan”

Matt Ames is a 30-year-old from Minneapolis, Minn. He is a small business owner. He is a camp counselor. He is a self-proclaimed “freak athlete.” And, born with a congenital heart defect, Matt is also an adult being treated at a children’s hospital.

Matt was born with levo-Transposition of the great arteries. Today, several open heart surgeries and two pacemakers later, Matt is still a patient at Children’s Hospitals and Clinics of Minnesota – the largest pediatric cardiovascular program in the Upper Midwest and recognized by U.S. News & World Report as one of the best children’s hospitals in the nation for cardiovascular care – and continues to receive treatment at the same facility, by the same nationally-renowned medical team, as when he was born.

“It’s eye-opening what they can do now,” says Matt. “Not so long ago I would have been considered lucky to be alive. Yet today, more and more children are able to survive this condition and go on to lead healthy, full lives. Technology and newfound disciplines have come so far.”

Until only recently, infants born with congenital heart defects weren’t expected to live past their teens. About 1 in 100 kids are born with a heart defect, but thanks to the advances made in congenital cardiac surgery, many are growing into adulthood.

“In the last year alone we had upwards of 250 patients in the clinic, and many of them were just like Matt – adults that were treated as children for congenital heart defects. It’s great to see so many of them living healthy, active lives,” said Dr. Chris Carter, pediatric cardiologist, Children’s Heart Clinic.

“In addition to caring for thousands of pediatric heart patients each year, what makes Children’s special is that we have a dedicated team of doctors to work with adult patients. It’s an incredible, growing field, and our specialists are some of the best-equipped to treat and care for hearts of all ages and sizes. In fact, one of our oldest patient is in his 70’s!”

As founder and owner of MN Pro Paintball, Matt does not allow his heart to define him. A company he launched upon graduating from high school, he has since grown the business to include a 200-acre outdoor paintball park in Lakeville, retail stores in Burnsville and Minnetonka, as well as an online store. He was also named the 2012 Minnesota Young Entrepreneur of the Year by the U.S. Small Business Administration.

Matt also does not forget how fortunate he is. Upon receiving a pacemaker transplant in 2008, Matt decided he wanted to give back to Children’s. Thus, the Challenge for Children’s (C4C) Big Game was born. Since the first annual event more than five years ago, a charity paintball event that has grown from 200 players to more than 700, MN Pro Paintball has raised more than $140,000 for the cardiac unit at Children’s.

“Being born with a congenital heart defect is often a heartbreaking diagnosis for parents,” adds Matt. “And undoubtedly for the child, it can be a challenging road to travel. Fortunately for me, and for so many others like me, there are places like Children’s and excellent medical support systems to help us succeed along that road.”

Matt gives a first hand account of his journey and shares more about the Challenge for Children’s Big Game here

Hearts of thanks: A note to the epilepsy unit at Children’s – St. Paul

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

We choose Children’s for the mix of services we can utilize for our son with multiple health care needs. This week, I want to say thank you to the nurses in the Epilepsy Unit. Sam has been inpatient for several different rounds of testing and to start the Ketogenic diet. As we started the diet, there was a steep learning curve for us as Sam’s chefs.  Our nurse, Pat, took extra time to sit and answer questions, to share ideas about what other families had done, helped us prep the food, and then watched while we learned how to do it on our own. She made sure we were ready to handle the transition from full support in the hospital to independent management at home. It wasn’t a dramatic moment, but it was at a period of time when so much was changing for Sam in terms of medications, he was having frequent trouble with pneumonia, and his overall health status was deteriorating. I felt overwhelmed and adding in more new requirements to Sam’s care regimen was daunting. The support from the nurses, and Pat in particular, made that transition easier and empowered me to feel more confident about continuing to care for Sam at home. Thank you for caring when we needed your help and supporting us when we were learning something new.

I also want to say thank you to the many people who smiled at us, greeted us, asked if we needed help, or gave us directions along the way. Many of you were housekeeping staff, maintenance staff, or in other non-medical positions. I want you to know your kindness is appreciated in addition to the hard work you put into making sure the needs of patients and families are being met.

Thank you for your commitment to kids, for your kindness, and for sharing your time and expertise to care for my son.

–Stacey Jenkins

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.