Category Archives: Patient stories

Cancer survivor uses wish to serve food to others

Lucas Hobbs, 12, of Eagan, Minn., used his Make-A-Wish to serve food to others with the help of food trucks.

Lucas Hobbs, 12, of Eagan, Minn., used his Make-A-Wish to serve food to others with the help of food trucks. He and four food trucks served food to patients, families and staff at Children’s – Minneapolis on Monday, Aug. 3, 2015.

Jimmy Bellamy

Seven months ago, Lucas Hobbs was diagnosed with Hodgkin’s lymphoma and spending nights at Children’s Hospitals and Clinics of Minnesota’s Minneapolis hospital. Today the 12-year-old Eagan boy is in remission and giving back to those who cared for him while he wasn’t feeling well.

Lucas received the chance to have one wish granted through Make-A-Wish Minnesota, but instead of choosing something solely to satisfy himself he used his wish to feed others with food trucks.

When he made the wish, Lucas said he wasn’t quite sure how it would work. How would he do all of this with one food truck? Make-A-Wish Minnesota went to work and partnered with nine food trucks for six separate food events.

On Monday afternoon, Lucas and four trucks — Kona Ice, The Moral Omnivore, O’Cheeze and R.A. MacSammy’s — visited Children’s – Minneapolis and served food to patients, families and staff for four hours, including a stop on the seventh floor for the cancer team and patients. Menu items included a mac-and-cheese dish named after Star Studio star “The Dude” and a hot dog named after Dr. Joanna Perkins, Lucas’ oncologist.

“She’s just a really great doctor,” Lucas said.

Patients, families and staff gather outside Children's – Minneapolis for Lucas Hobbs' Make-A-Wish food truck event Monday, Aug. 3, 2015.

Patients, families and staff gather outside Children’s – Minneapolis for Lucas Hobbs’ Make-A-Wish food truck event Monday, Aug. 3, 2015.

The wish was inspired by Lucas’ love of food and cooking, the generosity people showed him and his family by bringing them food when he wasn’t well and the movie “Chef,” the uplifting Jon Favreau film about a chef who buys a food truck and works alongside his young son.

subscribe_blogLucas’ food truck tour has included stops at:

  • O’Leary Manor and Lakeside Pointe senior living centers in Eagan (where his grandma resides)
  • The Minneapolis Police Department (Lucas says police can be underappreciated sometimes and he would like to be a police officer when he’s an adult.)
  • John Neumann Church in Eagan (his family’s church)

He and the food trucks will close out the Make-A-Wish tour with events at a homeless shelter and his school.


Follow Chef Lucas on Twitter and Facebook. Jimmy Bellamy is the social media specialist at Children’s Hospitals and Clinics of Minnesota.

Children’s patient surprised with tickets to One Direction concert in Minneapolis

Angelina (right) and best friend Samantha were surprised with tickets to the One Direction show in Minneapolis.

Angelina (right) and best friend Samantha were surprised with tickets to the One Direction show in Minneapolis.

Thirteen-year-old Angelina received a surprise this week during what she thought was a regular tour of the WCCO-TV studio.

The Children’s patient who battles a chronic lung disease was the recipient of a generous gift from a Twin Cities family. The father of the family bought four tickets as a Christmas gift for his two daughters, but a scheduling conflict made the family’s attendance at the show not possible.

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WCCO-TV: These One Direction fans get a huge surprise

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Instead of selling the tickets, the man enlisted the help of WCCO, which identified Angelina, who was featured earlier this year as one of “Kylie’s Kids,” a segment with WCCO’s Kylie Bearse that highlights a children’s hospital patient. The tickets, and $200 to spend on anything in preparation for the concert, were donated to Angelina and her best friend, Samantha. The pair were surprised on the TV station’s rooftop at the end of the tour.

Children’s patient surprised with One Direction concert tickets in Minneapolis from Children’s of Minnesota on Vimeo.

Minnesota woman born with cleft lip and palate learns to love smile

Cori Nesmith, a senior at the University of Minnesota, writes about her experience being born with a cleft lip and palate. (Photos courtesy of Cori Nesmith)

Cori Nesmith, a senior at the University of Minnesota, writes about her experience being born with a cleft lip and palate. (Photos courtesy of Cori Nesmith)

Cori Nesmith, a patient and volunteer at Children’s Hospitals and Clinics of Minnesota and senior at the University of Minnesota, shares her experience as a woman born with a cleft lip and palate.

Cori Nesmith

Did you know July is Cleft and Craniofacial Awareness Month? In honor of this special month, I’ll share the journey I’ve taken thus far as an individual born with a cleft lip and palate.

“Check out this picture; this baby has got a mustache,” a high school classmate said to me while browsing the Internet. The image on his computer screen was all too familiar. The infectious and wide smile of the baby in the advertisement made me realize just how far I had come. I was completely shocked that my classmate of 12 years at my small northern Minnesota school hadn’t made the connection that I was born with the same condition as the baby on the screen.

Here I am as a baby (in rather oversized clothing). I was born with a complete cleft lip and palate. The entire roof of my mouth (my soft and hard palate), as well as my upper lip, did not fuse together while developing.

Here I am as a baby (in rather oversized clothing). I was born with a complete cleft lip and palate. The entire roof of my mouth (my soft and hard palate), as well as my upper lip, did not fuse together while developing.

My parents had a difficult time feeding me, as I did not have the lip strength to suck on a bottle. My mom said that it would take hours just to get a couple ounces down.

Throughout my childhood I had many more operations. These childhood surgeries mostly were to improve my speech, which was subpar as the structure of my mouth was completely different than a typically developing child. I participated in about 12 years of speech therapy.

I was quiet as a child because I didn’t like the sound of my voice. I was embarrassed to talk, not because other kids picked on me, but because I picked on myself. Humans are their own worst critics. As my teenage years approached, I had a difficult time accepting myself and seeing my own personal beauty.

 

As a teenager I had many reconstructive surgeries. Reconstructive surgeries were hard for me because although I knew I would benefit from getting them done, I thought there was something wrong with my appearance that needed fixing. I thought that the world didn’t accept my crooked nose and scar. Although I was struggling with appearance issues, I tried to find humor in my situation. I forever have bragging rights for being the first person in my grade to get plastic surgery! #toocooltohandle

Here I am after my first surgery, a lip repair at Children’s – Minneapolis. During this stage of my life, “no-nos” were all the rage and kept me from touching my face. (For those of you who don’t know, a “no-no” is a brace that is worn on the elbow to keep babies from bending their arms.

Here I am after my first surgery, a lip repair at Children’s – Minneapolis. During this stage of my life, “no-nos” were all the rage and kept me from touching my face. (For those of you who don’t know, a “no-no” is a brace that is worn on the elbow to keep babies from bending their arms.

The summer before my junior year of high school, I had a major surgery to move my upper jaw forward because of palatal scar tissue that stunted its growth. Surgery was difficult and painful, but I learned two valuable lessons:

  1. Don’t ever try to liquefy pizza. Ever. It can be done, but it tastes awful and is a total letdown.
  2. Family and friends are extremely important. Without my family, friends and boyfriend, I would not have gotten through the recovery. They shared the burden with me and made it 100 times more bearable.

I always have had an affinity towards music. In high school, I participated in band and choir. Despite my abnormal mouth anatomy, I was able to grow as a promising young singer and saxophone player. When you have the passion for something, anything is possible.

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CHILDREN’S SERVICES: Cleft and Craniofacial Program

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This is me, post-jaw surgery, eating my first real meal in more than a month. (It was spaghetti and it was awesome!)

This is me, post-jaw surgery, eating my first real meal in more than a month. (It was spaghetti and it was awesome!)

Now I’m a senior at the University of Minnesota, majoring in music therapy and minoring in psychology. My primary instrument is voice, and, although I can’t do some of the typical singer warm-ups due to my anatomy, I’m fully functional in every other way, thanks to my doctors, nurses and therapists who have had an incredible impact on my life. I hope I can have that positive of an impact on my future clients as a music therapist.

Learning to accept myself for who I am always has been hard, but every day I’m getting better at taking the bad with the good and rolling with it. My experience with a cleft has made me stronger, more compassionate and patient. I know that life doesn’t have to be perfect to be amazing.

I have come so far, but my journey is just beginning. My cleft does not define me, but it has redefined my views of the world. A person’s smile says so much about them. My once-“mustached” smile means the world to me — and I wouldn’t change a thing.

“Don’t let the world change your smile. Let your smile change the world.” — Unknown

Cleft and Craniofacial Clinic Family Fun Day

The fifth annual Cleft and Craniofacial Clinic Family Fun Day takes place July 29 at the Kiwanis Boy Scout Camp at Marina on the St. Croix. The event is open to patients of the Cleft and Craniofacial Clinics and their family members of all ages and emphasizes fun, friendship, team-building and fostering resilience among patients with clef lip and palate and other craniofacial conditions. Participants can register for the event or call the clinic at (612) 813-6888 for more information.

Children’s heart patient featured on ESPN

Jarvis Johnson helped lead his DeLaSalle to four boys basketball state championships during his high school career. All of that came after he suffered cardiac arrest before a practice as an eighth-grader in 2010.

subscribe_blogESPN’s SportsCenter featured Johnson, a heart patient at Children’s Hospitals and Clinics of Minnesota, in a story called “Rise Up” as the University of Minnesota freshman fights for his basketball future.

Children’s cardiovascular program is one of the largest in the region, offering the newest techniques for treating kids’ cardiovascular and blood-vessel conditions, plus a megadose of heart in all we do.

Life changing: My time with Children’s Youth Advisory Council

Will Cohen (right) has been a member of Children's Youth Advisory Council for the past three years.

Will Cohen (front) has been a member of Children’s Youth Advisory Council for the past three years.

Will Cohen

My experience as a patient at Children’s Hospital and Clinics of Minnesota inspired me to become a member of the Youth Advisory Council, a group comprised of kids who help influence and shape the work of Children’s.

For three years I’ve been a proud member of the YAC. Although words can’t do justice to how thankful I am for the program, I’ll try to describe its wonders and the life lessons I’ve learned. It took just one meeting for me to know that I had joined a special group. The atmosphere around the council is unparalleled, nothing but positivity, and it’s my favorite part about being a member. People are happy and ready to make the hospitals and clinics better places.

Each meeting is unique and full of opportunities to learn because each kid — current or former patients — has a story. Almost all YAC members have been treated at Children’s for serious conditions. During the first meeting of the year, members explain why they are on the council and describe the medical obstacles they have overcome. Some of the stories are eye-opening and remind me how grateful I am for my health. During meetings, we also take tours, meet people, including staff, and explore growing areas of the hospitals.

subscribe_blogI owe the YAC and Children’s so much gratitude. My social and communication skills are better because I’ve been a part of the program. I’ll never forget when CEO Bob Bonar Jr. attended a meeting in January, one month after he started at Children’s, and had a conversation with each and every one of us as we introduced ourselves.

Most importantly, Children’s has made me a better person. When I make decisions for anything, I always think of the YAC. I treat people as they should be treated, with kindness and without judgment. I am more sensitive and respectful to people’s feelings, beliefs and opinions.

I have more empathy for people in need and feel the desire to extend my hand further daily to be more helpful.

I cannot forget the memories and lessons that I’ve gained throughout my years with the Youth Advisory Council. It has been an unforgettable ride, and I’ll always stay connected with Children’s. I am forever thankful for everything the YAC has given me.

Will Cohen is a recent graduate of Hopkins High School and will attend Kansas University this fall.

Team Superstars runner returns to her first home

photo

Children’s child life specialist Melissa Haun plans to run her first marathon in October as a member of Team Superstars, Children’s new running team.

Brady Gervais

At 33, Melissa Haun is back where she started.

Born just shy of 30 weeks’ gestation at 2 pounds, 6 ounces, she spent her first month at Children’s — in the neonatal intensive care unit. After gaining strength and weight, she moved to the transition nursery at Abbott Northwestern Hospital.

Melissa Haun as a baby

Melissa Haun as a baby

Today, she is a child life specialist at Children’s, where she focuses on our Comfort Promise. That is, she helps Children’s do everything possible to prevent and treat pain in kids.

“Children’s is where my heart belongs,” Melissa said.

After spending her day educating staff organization-wide about taking the sting out of needle pokes and blood draws — part of the Comfort Promise — she’s training at night for her first-ever marathon on behalf of the cause she loves most.

Melissa in the NICU

Melissa in the NICU

In October, she will go the extra mile by running the Medtronic Twin Cities Marathon and raising money for Children’s child life and pain and palliative care programs.

“ ‘Running ONE marathon’ is a line straight from my bucket list. I am not getting any younger, and when I saw that Children’s was having its first charity endurance team — Team Superstars — I knew it was meant to be,” Melissa said. “I’ve been told that you get addicted to running marathons, but just in case, I wanted to make sure Children’s got first dibs!”

subscribe_blogAlthough Melissa ran in high school and has been running since, she shares the same fear as every other first-time marathoner — stringing 26.2 miles together.

She’s anxious for the big day, too.

“I am most excited about my goal of getting friends and family to sign up to cheer as (S)MILE-MARKERS, and pass every one of them,” she said. “Don’t underestimate the power of each familiar face!”

Brady Gervais is an annual giving officer in the foundation at Children’s Hospitals and Clinics of Minnesota.

StoryCorps® Legacy comes to Children’s

Core Legacy team members include (from left): Gautam Srikishan, Alisa Linne, Eddie Gonzalez, Angie Boyd, Jill Swenson, Stephanie Davis, Elizabeth McDonough and Jocelyn Bessette Gorlin

Core Legacy team members include (from left): Gautam Srikishan, Alisa Linne, Eddie Gonzalez, Angie Boyd, Jill Swenson, Stephanie Davis, Elizabeth McDonough and Jocelyn Bessette Gorlin

Jocelyn Bessette Gorlin, Alissa Line, Angie Boyd and Eddie Gonzalez 

A few of the questions people have asked each other in the StoryCorps® Legacy family interviews facilitated in the hematology department at Children’s Hospitals and Clinics of Minnesota include: “Why do you love me?” “How did you feel when they told you I had hemophilia or sickle cell disease?” “What kinds of things do you like to do together?” “What’s the most challenging thing about living with hemophilia or sickle cell disease?”

So far, by sharing their stories, families have made meaning of their experience and embraced the program. The program soon will be implemented in other clinics at Children’s in the near future.

subscribe_blogHave you heard of StoryCorps®? 

Maybe you’ve heard of StoryCorps® or listened to their stories. StoryCorps® is a national oral-history program sponsored by National Public Radio that gives people of all backgrounds and beliefs the opportunity to record, preserve and share their life stories. So far, more than 80,000 people have recorded their story since 2003. Many people have heard of StoryCorps® by listening to its weekly broadcast on NPR.

StoryCorps® Legacy focuses on the stories of families of people affected by serious or chronic illnesses. Legacy partners with several hospitals and specialty health care centers, nationwide. Because Legacy is privately funded by a grant, there is no direct cost to utilize the program.

Children’s currently is facilitating Legacy interviews with the families of kids who have bleeding disorders such as hemophilia and von Willebrand’s disease and families of children with sickle cell disease. The partnership with the sickle cell population is particularly important because, historically, there are few research projects or special programs that have been available to these families.

How did StoryCorps® Legacy come to Children’s? 

In 2014, we applied to Legacy to be its partner. Throughout the year, legal negotiations occurred between Children’s and Legacy. Monthly meetings were held by a core Legacy team to define goals and discuss recruitment. To accomplish all of this, we needed to adopt a multidisciplinary approach, including the input from medicine, nursing, social work, administration and the legal department.

Finally in March, two enthusiastic members of the Legacy staff, Eddie Gonzales and Gautam Srikishan, flew to Minneapolis from New York for a four-day orientation. On the first day, they presented an overview of Legacy to the entire hematology staff (see photo). The subsequent three days involved Eddie and Gautam teaching our core Legacy team members how to use the recording equipment, which is housed in a portable rolling backpack. The recording equipment then was left with us to facilitate family interviews for the next three months.

Gautam Srikishan (top) from Legacy assists core Legacy team members in facilitating interviews.

Gautam Srikishan (top) from Legacy assists core Legacy team members in facilitating interviews.

What is it like for the families to participate in Legacy interviews? 

Families who express an interest are sent an orientation packet that includes possible questions to ask in the interview. Families then choose two or more family members or acquaintances to participate in the conversation. On the day of the interview, they arrive at the clinic and are escorted to a quiet room located below the clinic that’s designated for audio recording. One of our trained core Legacy team members then facilitates the conversation by audio recording it and assisting participants to ask each other questions. Each family spends about 1½ hours with us, but the actual recording time is 40 minutes. There is no video recording, but we do take fun photos at the end of the interview.

What happens to the recordings?

Elizabeth McDonough, RN (top right), facilitates a Legacy interview with Rae Blaylark and her son, Treyvon.

Elizabeth McDonough, RN (top right), facilitates a Legacy interview with Rae Blaylark and her son, Treyvon.

A CD is made from the audio recording, and the families can choose to keep the recording, or they may share it with Children’s, StoryCorps®, and the Library of Congress in Washington, D.C. Sharing their story can help other families also dealing with chronic illnesses. For example, we hope to use these stories in creative ways such as placing the stories on iPads in clinic so other families may learn what it’s like to raise a child with a bleeding disorder or sickle cell disease.

For African American families, there is an added option for sharing their story with the Griot Initiative. “Griot” is a French word that refers to the tradition of oral history in West Africa. A griot is a West African storyteller. Presently there is a new building in construction at the Smithsonian in Washington, D.C., called the Museum of African American History and Culture. Families can choose to send an additional copy of their CD to be archived in this new building. This has been a popular option particularly for the families of children with sickle cell disease as sickle cell predominantly affects people of African American descent.

Who is involved in the project? 

The partnership between Legacy and Children’s could not have been possible without the effort of many people, specifically the core Legacy team who are presently facilitating the interviews. This team includes Elizabeth McDonough, RN; and Alisa Linne, LICSW (both from the sickle cell program); Jill Swenson, LICSW; and Jocelyn Bessette Gorlin, RN, CPNP (both from the department of hemophilia and thrombosis); Angie Boyd, MBA; and Stephanie Davis (both in administration in hematology). Medical staff includes Susan Kearney, MD; and Margaret Heisel-Kurth, MD (medical director and co-director of the department of hemophilia and thrombosis) and Stephen Nelson, MD (medical director of the sickle cell program).

The dedication of this team has been humbling.  McDonough, for example, has 30 years of experience working with the families in the sickle cell clinic. She worked tirelessly to recruit families, read numerous books of published StoryCorps® interviews and became the Legacy expert-in-residence.  Boyd spent hours coordinating the logistics of the orientation schedule.  Davis sent letters of invitation to hundreds of families, scheduled appointments and coordinating all core Legacy team members’ schedules.

What’s next? 

The next clinic group at Children’s to partner with Legacy will be the International Pleuropulmonary Blastoma (PPB) Registry, also in the department of cancer and blood disorders, starting Aug. 7, when they host the fifth meeting for patients and families affected by this rare childhood lung cancer. The PPB registry’s participation will be novel because in addition to audio recordings they plan to use video technology to facilitate some interviews for international families who cannot make the meeting. The coordination between Legacy and the PPB registry is being coordinated by Gretchen Williams, Ann Blake with Yoav Messinger, MD; and Kris Ann Schultz, MD. Trisha Anderson is the family liaison. For more information, contact Anne Blake at (612) 813-7115.

Interviews for the bleeding disorder and sickle cell families continue at Children’s each Thursday until the end of July. If you or someone you know is interested in obtaining more information or wish to participate in Legacy, contact Stephanie Davis at (612) 813-7483. There is some flexibility in scheduling, so call to inquire.

Special thanks to additional individuals who made the collaboration possible: Rebecca Wright, MPH; Susan Sencer, MD; and Vicky Schaefers, CNP (hematology/oncology); Clark Smith, MD; Becky Bedore and Christa Steene-Lyons (senior administration); Nancy Martinson and Cory Fitzpatrick (legal); Lisa Buchal (social work); Madeline Riggs (communications); Seth Kanne and Amy Hebert (Star Studio)

Pair of Minnesota teens make pillowcases for hospitalized kids

Hannah Bremer (left) and Sophia Schmidt established the Sweet Dreams Project as high school freshmen.

Hannah Bremer (left) and Sophia Schmidt established the Sweet Dreams Project as high school freshmen.

Members in the foundation at Children’s Hospitals and Clinics of Minnesota decided to spend June celebrating kids giving to kids through the creation of Youth Philanthropy Month. Throughout the month, we’ll shine a spotlight on kids who have donated their time, money or efforts to Children’s.

Today we’d like to introduce Hannah Bremer and Sophia Schmidt, both 18, a pair of Rogers High School seniors (graduating today!) and founders of the Sweet Dreams Project, an effort to make pillowcases for patients at Children’s.

What did you/your group donate to Children’s?

Our original and primary project is our homemade pillowcases. Our pillowcase project was inspired by the homemade pillowcases Sophia received from her grandmother when she was a patient at Children’s six years ago. Remembering how the pillowcases lifted Sophia’s spirits and made her hospital room feel more like home, we decided to make our own pillowcases for patients when we were freshmen in high school. What started as a way to spend our summer vacation soon turned into something much bigger, and we have since expanded our project by collecting thousands of teddy bears and craft supplies for patients through drives in our community.

Why did you/your group choose to donate to Children’s?

Both of us have been patients at Children’s, so we know on some level what it is like to be a hospitalized child. We also know that Children’s treats every single child with the utmost care and respect, and we wanted to give back in a small way.

subscribe_blogHow does donating/giving to others make you feel?

We both have been blessed with good health, and to be able to pay it forward in this way is incredibly rewarding. Just knowing that we were able to bring a little bit of happiness to someone going through such a difficult time makes everything worth it.

How would you encourage others to support Children’s?

Through our project, we have learned that it doesn’t take much to help others. It doesn’t have to be a huge donation or a lot of work. Just a small gift, like a homemade pillowcase or a new box of crayons or a cuddly stuffed animal, can make a big difference. What seems ordinary to you might make another child’s day extraordinary.

If you won the lottery and shared some of your winnings with Children’s what would you want that money to fund?

We would want the money to fund something entertaining for the patients. Having something fun to do can provide an escape from whatever the patient is facing and be beneficial to the healing process. It’s very important to us that patients get a chance to be a regular kid and have fun doing the things they would normally do at school or with their friends.

TEDx Talk: “The untapped potential of today’s youth” w/ Hannah Bremer and Sophia Schmidt

Kangaroo care at Children’s helps baby Lauren

The McConnell family, Jethro and Becky, with daughter Lauren (Photos courtesy of the McConnell family)

The McConnell family, Jethro and Becky, with daughter Lauren (Photos courtesy of the McConnell family)

Brady Gervais

Becky McConnell waited 11 days before she could hold her daughter, Lauren.

Getting to hold her for the first time was a milestone for the new mom and her daughter, who was born prematurely. She remembers how it felt holding Lauren skin to skin, against her chest; it’s called kangaroo care, which helps babies bond, feel less stressed and heal. And it’s what Becky said she believes helped Lauren get through some rough patches.

“She knew she was alive, that she would be OK and that I was her mom,” she said. “I didn’t know I could love a little girl so much.”

Becky uses kangaroo care, skin-to-skin contact, on newborn daughter Lauren.

Becky uses kangaroo care, skin-to-skin contact, on newborn daughter Lauren.

Lauren was born at 24 weeks, 5 days on March 9 at Ridgeview Medical Center in Waconia before she was rushed to Children’s, where she since has spent her days in the neonatal intensive care unit. It had been a normal pregnancy until hours earlier when Becky experienced symptoms that pointed to a bladder infection. While her care team examined her, they discovered she was 6 centimeters dilated.

Because of Children’s supporters, the McConnell family has experienced outstanding care and been touched by generosity every day of their journey: the kangaroo chairs are specially designed recliners for supporting natural skin-to-skin bonding; the Ronald McDonald House that provided Becky and Lauren’s dad, Jethro, with a cozy bed and a hot meal just down the hall; the NICVIEW cameras that allow Becky to see her daughter now that she’s back at work.

Children’s nurses have touched the McConnell family, too. On Becky’s first day back at work, she said one of Lauren’s nurses asked how she was doing and how work was going.

subscribe_blog“The nurses have been beyond phenomenal,” Becky said. “They’re not only there for Lauren; they’re there for us.”

Becky said she thinks Lauren will get to go home in June, but “I don’t want to rush things,” she said. “She’s in the best place.”

While the McConnell family is unable to attend today’s fifth annual Baby Steps 3K this year, they hope to participate in years to come to support Children’s neonatal program.

The McConnell family

The McConnell family

Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.

Surgery for ear tubes common for kids

Lindsey Starsky's children, daughter Margie Claire (left), 4, and son Lewis, 10 months, had ear-tubes surgeries at Children's. (Photos courtesy of Lindsey Starsky)

Lindsey Starsky’s children, daughter Margie Claire (left), 4, and son Lewis, 10 months, had ear-tubes surgeries at Children’s. (Photos courtesy of Lindsey Starsky)

Lindsey Starsky knew exactly what to expect when her 10-month-old son, Lewis, underwent surgery for ear tubes earlier this year. Starsky’s oldest child, daughter Margie Claire, had gone through the same process not long ago.

Both kids had ear tubes put in by Barbara Malone, MD, at Children’s Hospitals and Clinics of Minnesota. Dr. Malone is a pediatric otolaryngologist, which means she specializes in ear, nose and throat (ENT) care.

“Children’s was very accommodating and great with the kids,” said Starsky, who was referred to Dr. Malone through her kids’ primary pediatrician. “Child life specialists were brought in to introduce what was going to be happening.”

Every year, more than 500,000 kids receive ear tubes, making it the most common childhood surgery performed with anesthesia, according to the American Academy of Otolaryngology-Head and Neck Surgery. Of children who have tubes, 80 percent will need them once, said Dr. Malone.

Lewis

Lewis had surgery for ear tubes, just like his sister.

Reasons for ear tubes

The two primary reasons kids need ear tubes are:

  • The recurrence of middle-ear infections
  • Persistent fluid in the ear, which usually creates hearing loss

Ages for ear tubes

The two most common ages kids need ear tubes are between:

  • 15 months and 3 years (usually due to ear infections)
  • 4 and 6 years (typically due to hearing loss from fluid buildup)

What are tubes? How do they work?

There are many different types of ear tubes. Two of the major types are grommets and T-tubes.

The grommet naturally falls out in six months to two years, on average. While it’s inside, it will allow the middle ear to maintain barometric pressure to help decrease rates of infection and fluid production.

The T-tube is shaped like it sounds; it has flanges that open behind the eardrum and remains in the ear indefinitely. T-tubes commonly are used for kids who have required multiple sets of tubes or have an anatomic predisposition to prolonged Eustachian-tube dysfunction, which has been seen in kids with Down syndrome or cleft palate, according to Dr. Malone.

Fluid can be trapped behind the eardrum. The human body’s Eustachian tube — named after 16th-century anatomist Bartolomeo Eustachi — typically works by allowing air in and fluid to drain out. If the tube can’t open, fluid can’t get out, leading to an infection or hearing loss — or both. Tubes allow the fluid to drain.

subscribe_blogDetermining a need for tubes

If you have concerns about your child’s recurrent ear infections or hearing, talk to your child’s doctor. Primary care physicians will refer your child to an ENT doctor when and if they think your child is a candidate for ear tubes. Hearing also should be evaluated, Dr. Malone said.

What to expect if your child needs ear tubes

If your child is referred to an ENT who decides ear tubes is the next step, the procedure is an outpatient visit, unless combined with another medical procedure that requires a hospital stay.

“When my daughter got tubes the first time (at 8 months), it was a fast procedure. By the time I got back to my waiting room it was less than five minutes and Dr. Malone was back,” said Starsky, whose daughter needed two procedures, the second one at age 2 to remove adenoids, a mass of soft tissue behind the nasal cavity. “The second time was a little bit longer. Dr. Malone walked us through everything and had given us information to read about what to expect; it was even easier when we had to bring in Lewis.”

Typically kids are back to themselves within the same day and don’t notice the tubes in their ears aside from better hearing and fewer ear infections. Starsky said Margie Claire’s hearing and sleep improved immediately, and trips to the doctor for ear trouble no longer are a regular occurrence.

“Being at Children’s was great,” Starsky said. “If we had to do it again, we’d go back and through the whole process.”