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)

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.

Five Question Friday: Dr. Chris Carter

It’s Congenital Heart Defect Awareness Week, so we want to use this Five Question Friday to feature one of our cardiologists, Dr. Chris Carter, who works at the Children’s Heart Clinic at our Minneapolis campus.

Why did you go into cardiology? I went into cardiology because I enjoy the complex and varied anatomies that we see in pediatrics. The physiology and complex repairs are fascinating. I also specialize in heart rhythms (electrophysiology) because I think the rhythm disorders that often accompany a repair are also interesting. I love working with kids and their families, which is a great part of the job.

What are some of the conditions you treat? I focus more on rhythm-related issues, so I help take care of patients with things like supraventricular tachycardia (hearts that beat faster than they should). I also follow kids with congenital arrhythmia disorders – or irregular heartbeats – like long QT syndrome, Brugada syndrome, Catecholaminergic polymorphic ventricular tachycardia (CPVT), etc., who sometimes have implantable cardioverter defibrillators (ICDs). I work with kids who have devices like pacemakers for acquired and congenital heart block. I also see some general cardiology patients and am involved in our adult congenital heart disease clinic.

It’s Congenital Heart Defect Awareness Week. If you could make families aware about anything about heart defects, what would it be? Children born with congenital disease are now living long and productive lives. As a matter of fact, there are now more adults alive with congenital heart disease than there are kids!

Do you have a favorite memory from working at Children’s? It is hard to pick a favorite memory because there are many. I’d say one of the best was when we removed a large cardiac tumor from a patient after he had a sudden arrest at home. He left the hospital after his tumor was removed without any significant side effects. Today he is a lovely and very active young man.

When you were a kid, what did you want to be when you grew up? I actually have wanted to be a doctor since I was 5 years old. To this day I am not sure why as there are no other doctors in my family.


Hearts of thanks: Maisy’s story

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.

Dear PICU staff,

Imagine a young girl without a family by her side, when she was fighting for her life…facing one surgery after surgery another, alone. And then imagine a staff who took this little girl under their wing and gave her the compassionate and quality care she deserved. And then picture this same girl who is 6 years old now. Who, after 28 surgeries, a pacemaker placement and countless other procedures and hospital stays…imagine this same little girl filled with confidence, charisma and abounding enthusiasm and love to give. This is our daughter Maisy… who joined our family through adoption after living two years of her life without a forever family. Because of the love and quality care that Maisy received at the hospital, she is thriving, happy and ready to take on the world. I don’t believe that she would have a future as bright if she had not received such excellent and nurturing care. To you, we give you a heart of thanks!

— Julie Martindale

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

Hearts of thanks: A micro-preemie’s journey

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.

Samantha turns 7 this week. She is a big girl who loves ice skating and dinosaurs, but she started out as a 1 pound micro-preemie in the Children’s NICU.

Thank you Nurse Marcy for caring for Sam at her most fragile and for showing us how to change diapers on our tiny, tiny baby. Thank you Nurse Mary, Nurse Heather and Nurse Peg for being our constants in our topsy-turvy 128-day NICU stay. You juggled schedules to be with us on scary days and called in to support us when you couldn’t be there.Your patience, advocacy and love helped us through the hardest time of our lives.

We are forever grateful.

— Michelle Jackman

Sam as a micro-preemie in the NICU and today playing hockey.

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

Hearts of thanks: A letter to nurse Sara

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.

Thank you Sara – you touched our lives

Aug. 19, 1996, was the day that changed our lives forever. This was the day my husband, Tom, started a new job, and we all were so excited. You see, this job was the one that made it possible for me to quit my job to stay home with our three young children, Zachary (5), Cody (2 ½) and Hannah (10 months). The plan was for him to spend his first week in Boston training and meeting customers.

Aug. 19, 1996, was also the day I had scheduled to take Zachary in to see the doctor. Something wasn’t right and I wanted him seen. He was incredibly tired and cranky. He also looked very pale standing next to Cody, his summer-suntanned little brother. Plus, he had these pesky little bruises on his legs that I couldn’t figure out (I later learned these are called petechiae – a result of a low platelet count).

4:00 appointment. 4:30 blood draw. 5:00 cancer diagnosis, and by 6:00 p.m. we were already a “Children’s Family”. Tom was paged at a Red Sox game at Fenway Park to receive the phone call from his brother that Zach had leukemia and we were at the hospital.

It was a long, lonely night sitting in the hospital watching my beautiful boy sleep all the while knowing that Tom was alone in his hotel room in Boston, dealing with his grief alone because he was not able to catch a flight home until the morning.

The sun came up – a new day. That morning Zach and I met Sara Gernbacher. She walked into Zach’s room and introduced herself. She told us she would be Zach’s primary nurse.  This was the beginning of a very long road, and little did I know at that time, what an important role this person would have in our lives. She became more than Zach’s nurse; she was our guide, our comforter, our information source, our gentle spirited friend, and Zachary trusted her completely. She truly was part of our inner circle, and we are so thankful she came into our lives.

I’d like to share with you a few wonderful magical Sara memories…

Throughout Zachary’s treatment, she always took the time to talk one-on-one with him, listening intently to everything he had to say. She made him feel like there was no one more important than him. One memory stands out in my mind: one day that we were in clinic, Zach was very upset about getting a shot in his leg. He would have nothing to do with it. He hid under a table in the exam room. Sara crawled under the table with him, and just sat with him. She calmed him, reassured him. Within a few minutes she had his permission to move forward with the shot – right there under the table. Magic!

Later in Zach’s treatment, Sara shared great news with us. She was pregnant with her second child. We were thrilled for her, but also secretly wondered how we’d get through treatment without her. She assured us that her substitute would take great care of Zach, which she did. One day in clinic during Sara’s maternity leave, she surprised us by showing up at Zach’s appointment. She stopped in to see Zach, and to show him her new baby. It brings tears to my eyes to type this, remembering the tender moment shared between Sara and Zach as he said hello to her new baby girl.  

Over the course of our clinic visits, we discovered that Sara’s parents owned property on the same lake in Annandale that Zachary’s grandparents did. The Annandale 4th of July parade was an annual event for our family, and Sara’s too. Every year, Sara made a point to find us and say hello to Zach and our entire family. By this time, Zach was off treatment, so we especially looked forward to seeing her and her growing family.

These stories all took place several years ago. Zach is now 23 years old, and only comes to clinic once per year for his long-term follow up appointments. Sara, however, hasn’t stopped caring. Last January, Zach and I were in for his long term follow up appointment. We didn’t expect to see anyone we knew, since we had a late appointment – 5:00 p.m. As we were waiting to be seen, someone very special quietly slips into the room to say hello. It was Sara, and we all hugged – such a sweet surprise.

So here we sit, 14 years past treatment. We are thankful EVERY day for the wonderful care our son received at Children’s, and we feel truly blessed that Sara Gernbacher was a part of that treatment plan. Thank you Sara – we’re so grateful to you!

— Amy Bigot

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

Zachary, New Year’s Eve 1996

Sara introduces Zach to Marit, her new baby girl.

Zachary today.