Category Archives: Patient stories

Making of “Meet Abbey, future ballerina”

We get to work with amazing kids like Abbey every day at Children’s Hospitals and Clinics of Minnesota. And each one has a dream that’s worth reaching.

The concept of the “Give today. Support tomorrows.” fundraising campaign is built on the spirit that every child has the chance to realize his or her hopes and dreams.

Take a behind-the-scenes look at the making of the commercial featuring Abbey, the future ballerina, and her family.

You can help our kids get to “when I grow up.” Give today. Support tomorrows.

Making of “Meet Abbey, future ballerina” from Children’s of Minnesota on Vimeo.

30-second commercial:

Meet Abbey, future ballerina from Children’s of Minnesota on Vimeo.

Andrew’s Journey: A life of great purpose and meaning

By Nicole Schmidt

Excited to wear my cute boots for a post-Christmas brunch at my sister’s, I needed to use the bathroom one more time before we headed out. Let’s just say when I sat down I got more than I had expected.

(Photos courtesy of Nicole Schmidt)

Nicole and Paul Schmidt are the parents of Andrew Schmidt. (Photos courtesy of Nicole Schmidt)

My son, Andrew Jacob Schmidt, entered the world three weeks early and changed our lives forever. As a parent, you never forget the first time you look at your child. When I first locked eyes with Andrew, I knew something was not right but couldn’t put my finger on it. The phrase “coarse facial features” was used by our pediatrician, and we were encouraged to be evaluated by a geneticist.

Andrew Schmidt

Andrew visited Children’s when he was 4 months old.

When Andrew was 4 months old, we visited Children’s Hospitals and Clinics of Minnesota. With thick stacks of paperwork in hand, the questioning and assessment of our son and his coarse facial features began. We worked with Dr. Nancy Medelsohn and the genetic counselor that day and over the next few months. After a multitude of tests and referrals, they concluded that that Andrew had Beckwith-Wiedemann syndrome. This rare disorder is characterized by pre/postnatal overgrowth, neonatal hypoglycemia, congenital malformations and a higher risk for tumors and cancer.

Andrew Schmidt

Andrew initially was diagnosed with Beckwith-Wiedemann syndrome shortly after birth.

Over the next few years, Andrew continued to struggle. He was not meeting basic developmental milestones and was suffering from low-muscle-tone seizures called myoclonic jerks and was diagnosed as deaf and blind. Oddly enough, none of these symptoms were associated with Beckwith-Wiedemann syndrome. There were frequent phone calls from Dr. Mendelsohn’s office, most often from herself to guide us to the next course of action, set up early intervention, refer us to other specialists or relay lab work or ultrasound findings.

Q4_mighty_buttonAfter attending a Beckwith-Wiedmann syndrome medical conference and sharing Andrew’s case with several people including Dr. Beckwith himself, my husband, Paul, and I decided to reach out to Andrew’s superstar, Dr. Mendelsohn. We shared what we had learned and she reopened the case. Soon after, she recommended that we test for an extremely rare genetic disorder called Pallister-Killian syndrome.

I was certain the test would prove negative, until I looked up this syndrome the night before the test. I couldn’t believe my eyes; it was like Andrew was plastered all over the website: broadened eyes, turned-up nose, myoclonic jerks, severe cognitive delays, deafness and blindness. Andrew met almost every characteristic. We weren’t surprised when Dr. Mendelsohn called to confirm Andrew’s diagnosis. Pallister-Killian syndrome occurs for no known reason. With only 300 diagnosed worldwide, Andrew was the first diagnosis in Minnesota.

Andrew was diagnosed with Pallister-Killian syndrome.

Andrew was diagnosed with Pallister-Killian syndrome, an extremely rare genetic disorder.

We finally had an answer. We had milestones to look forward to and compare. For the first time, we were looking at our son with all of the things he had accomplished versus all the things he hadn’t. We had a diagnosis. We had a doctor who listened to me, a doctor who trusted me, and I trusted her. Mutual respect for knowledge and skill, her wisdom from education and practice combined with my 24/7 observations, commitment and love for my child made us a great team, Team Andrew.

pksWith this diagnosis, my grieving and healing had already begun. I started forgiving myself for a syndrome over which I had no control. I started taking some deep breaths and learned we were in a marathon. There were no quick fixes, no miracle drugs, no special cures.

As we approach Andrew’s 10th birthday, he can walk with a walker and says “mama” and “more”; our dreams obviously have changed, but the journey to help him become part of this world now is supported with the resources we have gathered along the way.

Andrew

Andrew

Without the open mind of one doctor, who knows where we would be today?

As far as the cute boots? I still have them. My marathon might not be running in Duluth, but it’s a marathon that requires a unique set of training. It is a life most fear and one that I wouldn’t wish on any of you. But it’s a life with great purpose and meaning and sweet silver linings along the way.

Minnesota girl, 7, writes book to help patients

Kristina Heinlein, 7, wrote the book "Beans Brave Adventures at Children's Hospital," a story about her experience at Children's.

Kristina Heinlein, 7, wrote the book “Beans Brave Adventures at Children’s Hospital,” a story about her experience at Children’s.

Kristina Heinlein knows what it’s like to go through surgery. The 7-year-old Detroit Lakes, Minn., girl has had several procedures due to microtia, a congenital deformity where the outer ear is underdeveloped.

Q4_mighty_buttonFor the past two years, Kristina has undergone surgeries to reshape her right ear in hopes of gaining the ability to hear out of it. She has faced each procedure with bravery and enthusiasm, which made her want to share those experiences with other kids in a similar position.

What came from that was the book “Beans Brave Adventures at Children’s Hospital,” a story about Kristina’s journey at Children’s and advice for kids who will might be scared about surgery.

BOOK: “Beans Brave Adventures at Children’s Hospital” on Facebook

The Detroit Lakes Tribune wrote about the book and Kristina’s experience at Children’s. WDAY-TV of Fargo, N.D., and Moorhead, Minn., also featured a story about Kristina.

 

Meet John

When John grows up, he wants to be a hockey player.

When John grows up, he wants to be a hockey player.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: John

Age: 8

Hometown: Hastings

John was referred to Children’s, where he and his family learned he had stage IV advanced neuroblastoma. He has undergone chemotherapy, surgeries, radiation, a stem cell transplant, antibody therapy and now is participating in the difluoromethylornithine (DFMO) trial.

When John grows up, he wants to be a hockey player. Maybe even for the Minnesota Wild! Go, Wild!

No child loves being in the hospital, but when John is at Children’s, he loves watching The Dude on Channel 13.

Meet Sam

Sam came to Children’s because of hypoplastic left heart (HLH) syndrome and has undergone four open-heart surgeries to help reroute it.

Sam came to Children’s because of hypoplastic left heart (HLH) syndrome and has undergone four open-heart surgeries to help reroute it.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Sam

Age: 3

Hometown: Litchfield

Sam came to Children’s because of hypoplastic left heart (HLH) syndrome and has undergone four open-heart surgeries to help reroute it.

When Sam grows up, he wants to build parks because he loves playing in parks.

When at Children’s, Sam loves “all of the train toys they let me play with.”

Sam, 3

Sam, 3

Father of cystic fibrosis patient plans concert, silent auction for Children’s

Edison Hopper was born with cystic fibrosis. (Amy Best / Amy Colleen Photography)

Edison Hopper was born with cystic fibrosis. (Amy Best / Amy Colleen Photography)

If you asked Charlie Hopper if the birth of his son was hard, you’d be off. Way off.

“To say it was difficult would be inaccurate,” Hopper said. “Any time you’re confronted with something your child has that could shorten his life shifts your perspective. We’ve done our best to take his diagnosis in stride, and the help of the team at Children’s has made that possible.”

A week after Edison Hopper was born last year, he was diagnosed with cystic fibrosis (CF). He has been treated at Children’s Hospitals and Clinics of Minnesota ever since. It was a diagnosis that will forever impact the Hopper family. Parents Charlie and Becky have not only accepted it but also pledged to help other kids like Edison and all kids cared for by Children’s.

CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. It clogs the lungs and leads to life-threatening lung infections, as well as obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

After Becky became pregnant with Edison, she learned she was a CF carrier. As a result, Charlie was tested and also found to be a carrier. When both parents are carriers, children have a 1-in-4 chance of having CF. It wasn’t until after Edison was born that they learned his diagnosis.

“Emotionally, it was difficult after Edison was born, but we got to a point where everything leveled out, and it got easier and easier. We don’t know any different,” Hopper said.

Edison receives daily treatment. He takes 40,000 units of enzymes with every meal to help him maintain body weight, Hopper said. He uses a nebulizer twice a day and wears a vest during treatment to help loosen the mucus in his lungs.

He visits Children’s, specifically Dr. Brooke Moore at Children’s Respiratory and Critical Care Specialists (CRCCS) every three months for checkups. He does an annual visit with his whole CF team (doctor, nurse, dietitian, social worker, and respiratory therapist). To date, he has been healthy and hasn’t once been hospitalized.

Since Edison was born, there have been many promising developments for people with his diagnosis. Life expectancy on average for a person with cystic fibrosis is just over 37 years. Kids born today with it should live into their 50s, on average, Hopper has learned.

Q4_mighty_button“Part of why CF has advanced is because of places like Children’s,” he said.

Charlie and Becky are expecting their second child next year. Because they’re both carriers of the defective gene, their next child could have cystic fibrosis, too.

“We obviously don’t want our next child to have CF,” Hopper said. “But in the event our unborn son has CF, we’ll know how to manage it.”

Hopper wants to raise $15,000 yet this year for Children’s in honor of his son and the thousands of other kids for whom Children’s cares.

“Everything that Children’s represents is something bigger than us as individuals,” Hopper said. “They go above and beyond.”

To help raise funds for Children’s, Hopper has organized a benefit concert, featuring national touring band Blitzen Trapper at the Fine Line Music Café on Dec. 12 presented by 89.3 The Current and McTerry Music. Local standouts Farewell Milwaukee, Bigtree Bonsai and Old Desert Road will also perform. Tickets are $25 in advance, $30 at the door and $50 for VIP (balcony access and $20 bar tab); doors open for the concert at 7 p.m. Tickets are selling fast and can be purchased here.

There will be a pre-event silent auction sponsored by IPR directly next door to the Fine Line at 300 N. First Ave. from 4-7 p.m., featuring live acoustic music by local musicians David and Zach Young (Down and Above, Going to the Sun) and Ray Smart (The Attley Project, Meridian Incident). Admission to that event is $10 and includes free food and drinks, as well as two complimentary raffle tickets for prizes to be given away after the concert at the Fine Line (need not be present to win). Tickets can be purchased here. People with tickets to the concert will be admitted free. If you cannot attend either event but want to support the cause, give today.

Family thankful for care infant daughter received at Children’s

Khloe Marincel spent six weeks at the Infant Care Center in Minneapolis. (Photos courtesy of the Marincel family)

Khloe Marincel of Rice Lake, Wis., and her family spent six weeks at the Infant Care Center in Minneapolis. (Photos courtesy of the Marincel family)

The following is a letter to Children’s Hospitals and Clinics of Minnesota from Jason and Beth Marincel, father and mother of patient Khloe Marincel, and Kyri, Khloe’s sister.

Dear Children’s,

I am writing to you on behalf of our family’s outstanding experience we had while our infant daughter, Khloe, was hospitalized at Children’s Hospitals and Clinics of Minnesota’s Infant Care Center (ICC) in Minneapolis from July 9 to Aug. 16. Typically a lot of people wouldn’t consider a six-week hospital stay as a pleasant experience; however, to our family, this stay couldn’t have been any better except the fact we were split apart.

When this journey began July 9, we could say this was the scariest thing we have had to encounter as a family. Within a few hours of arriving in the Emergency Department, a solution was found to Khloe’s issue, and we immediately were comforted by several nurses and doctors that Khloe was in the best place.

Even though Khloe couldn’t get into surgery until July 11, we knew your staff was doing as much as it could to make sure our family’s needs were met. Prior to surgery, your staff thoroughly explained the procedure and recovery process for Khloe. As parents not knowing what to expect, we found that their explanation of the surgery very comforting and gave us confidence about the type of care Khloe would be receiving at your hospital.

Q4_mighty_buttonKhloe’s recovery time seemed to take forever due to a few setbacks. But, even when there was a setback, your staff was on top of it and already had a plan of action to take to get her quickly back on the path to recovery. When these setbacks seemed to get us down, your staff reassured us that these setbacks weren’t anything major and Khloe would be back on track before we know it.

There wasn’t a day that went by where a nurse didn’t ask what we needed or a surgeon didn’t clarify/explain Khloe’s progress. When it came time for Khloe to be discharged, we felt it was a bittersweet moment. We were excited the moment had finally arrived, but Beth had to fight herself from crying because of the extraordinary hospitality and service we received during Khloe’s stay. Your staff was professional and friendly and knew exactly how to make us feel welcome and at “home” even though we were two hours from our home and family in Rice Lake, Wis.

This kind of experience wouldn’t be easy for any family, but if a family were given a choice of where their child can receive the best service, we would definitely direct them your way! We are truly grateful for all your staff did to make us feel welcome in this chapter of our lives and the dedication they provided Khloe to make her stronger!  We are proud to inform all of you that Khloe weighs little more than 9 pounds (a number we hadn’t seen yet!), back to rolling over (as she did before being admitted) and smiling and talking more than ever! She has had one emergency room visit since she has been home, but only for an ear infection as a result of teething, another sign of getting much stronger! Our family would have no idea where we would be today if you didn’t provide your absolute best care to our daughter! (And Kyri would have no idea what she would be doing without her sister!)

Thank you so much!

Jason, Beth and Kyri Marincel

P.S. The members of the Geek Squad provide amazing customer service and have provided our family with many memories that enlightened our stay at Children’s Hospital. They have no idea how much their positive attitudes and generosity mean to families in your facility. Sometimes a highlight of my day would be those five pictures I was able to print. They may think it is a simple act of kindness, but it’s the whole world to most in your facility!

Children’s preemie returns as intern

Kathryn Marxen was born at 25 weeks in 1989, weighing 1 pound, 6 ounces. She is 1 week old in this photo. (Photos courtesy of Kathryn Marxen)

Kathryn Marxen was born at 25 weeks in 1989, weighing 1 pound, 6 ounces. She is 1 week old in this photo. (Photos courtesy of Kathryn Marxen)

By Jimmy Bellamy

Kathryn Marxen’s life has come full circle. Children’s Hospitals and Clinics of Minnesota is where it all began for the 25-year-old occupational therapy intern.

Underdeveloped lungs and vision problems were just some of doctors’ and Kathryn’s family’s concerns.

Underdeveloped lungs and vision problems were just some of doctors’ and Kathryn’s family’s concerns.

Born premature at 25 weeks at Abbott Northwestern Hospital in Minneapolis, fragile 1-pound, 6-ounce infant Kathryn immediately was brought next door to Children’s where she spent her first 10 weeks on a ventilator, refusing to give in to the obstacles an early entrance into the world can create.

Underdeveloped lungs and vision problems, including a detached retina, were just some of doctors’ and Kathryn’s family’s concerns. Later she would be diagnosed with retinopathy of prematurity (ROP) – abnormal blood vessel development in the eye. Eating became difficult, too, for tiny Kathryn, who could wear her father’s wedding ring as a bracelet, so a gastronomy tube was required for feeding.

Q4_mighty_buttonWhile staying in the neonatal intensive care unit, her organs began to fail. Kathryn said when things looked grim, her mom and dad stayed at her side and her dad would read to her, and it seemed to help.

“Dr. Ronald Hoekstra came by and said, ‘Whatever you’re doing, keep doing it,’ ” Kathryn said she was told. “It was that connection of a parent’s voice.”

Doctors performed a patent ductus arteriosus ligation to close the ductus arteriosus in Kathryn’s heart, cryosurgery on her eyes to stop the progression of ROP, gave her lung-surfactant medication, and a scleral buckle to reattach the retina in her right eye in – a surgery that was fairly new in 1989.

At 6 months, after a couple in-and-out stays, Kathryn was ready to go home for good. She continued to go to Children’s for follow-up visits until she and family moved to Beavercreek, Ore., when she was 8 years old.

Kathryn has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Kathryn has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Sight and double vision has been a hurdle through the years – her left eye is 20/70 while there isn’t much visibility in her right – but it hasn’t plagued her existence; she refuses to allow it to stop her. Kathryn enjoys the outdoors, including hiking and rock climbing. She has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Kathryn received a master's of science in occupational therapy from the University of Puget Sound in Tacoma, Wash., in May.

Kathryn received a master’s of science in occupational therapy from the University of Puget Sound in Tacoma, Wash., in May.

In college, Kathryn received a bachelor’s degree from Colorado State University in equine science and master’s of science in occupational therapy from University of Puget Sound in Tacoma, Wash. She began her internship at Children’s rehabilitation clinics in September.

She also speaks to groups of high school students with disabilities and other organizations, sharing her unique story, challenges and positive, optimistic view.

“At first, I was pretty embarrassed of my story and not as comfortable sharing it,” Kathryn said. “As I grew up and got more comfortable and familiar with it, I started to realize the power of those experiences as a premature infant, even though I don’t remember them. I can connect with people through my story and provide hope.”

When she was a kid, Kathryn didn’t want to be different and refused to use magnifiers to help her sight. It wasn’t until a low-vision high school teacher told her she could be even more successful with the right tools. Kathryn realized she could do just as well as others, if not better, and that built confidence.

Her difficult start to life, she said, helped her become brave; it’s what she credits with landing her a teaching-assistant position under famed animal scientist Dr. Temple Grandin at Colorado State and her internship at Children’s.

“It’s one of those things where if you don’t ask, you don’t know,” Kathryn said. “If there’s something I want to go do, I just ask the questions that I need to ask.”

Kathryn as a child

Kathryn as a child

Some of Kathryn’s highlights as an intern include observing occupational therapists at the NICU follow-up clinic, where she got a chance to speak with Dr. Hoekstra and Lois Gilmore, who cared for Kathryn as a preemie, and walking into the waiting room on her first day to see brochures for and work done with the animal-assisted therapy program.

She has a strong interest in working as an OT in the NICU.

“It would be awesome to be at Children’s to bring things even more full circle if I held a position in the NICU, but I could see myself doing that anywhere,” Kathryn said. “That’s my long-term goal; it takes quite a bit of continuing education because it’s an advanced area of practice.”

Kathryn said having the perspective of a patient can be used to help others in a similar position.

“I realize how my story and experiences can provide that hope for the families going through that,” she said. “I can tell them, ‘You guys will overcome this.’ ”

Jimmy Bellamy is the social media specialist at Children’s Hospitals and Clinics of Minnesota.

Meet Julia

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Julia

Age: 8

Hometown: Elk River

When she was 5 years old, Julia was taken to Children’s after her mom discovered she was turning blue and feeling extra-tired. He lungs collapsed, and doctors discovered that Julia has a rare asthma, triggered by viruses.

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

She likes practically everything about Children’s, so she’s raising $1,000 annually for the next five years to help other kids.

Meet Katie

What Katie loves most about Children’s is the music therapy program.

What Katie loves most about Children’s is the music therapy program.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Katie

Age: 5

Hometown: Eden Prairie

Katie was rushed from Abbott Northwestern Hospital to Children’s after she was born 15 weeks early. She only weighed a pound and had to stay in the neonatal intensive care unit (NICU) for 99 days. According to her mom, she is now happy, healthy and doing wonderfully.

When Katie grows up, she wants to be a dancer. She loves to dance.

What Katie loves most about Children’s is the music therapy program. Her brother, a member of our Youth Advisory Council (YAC), even helped to design a music cart for the music therapists at Children’s.