Category Archives: Patient stories

Mom grateful for Children’s care before, after daughter’s double lung transplant

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason

My dreams came true 8½ years ago when I became a mother to Kali Grace, the most beautiful baby girl. But little did I know how many people I would need to keep my dreams alive.

My water broke at 22 weeks, and Kali had to be delivered at 24 weeks. She came into this world weighing 680 grams, less than 1½ pounds, and with underdeveloped lungs. Before I could even see her, she was whisked away to the neonatal intensive care unit at Children’s Hospitals and Clinics of Minnesota, where she would spend the first eight months of her life.

Kali's baptism

Kali’s baptism

Kali was always one of the most critical patients on the unit and liked to keep all of her doctors, nurses and therapists on their toes to be sure they could handle anything. Her team did handle everything and more that Kali gave them. She was cared for greatly, and everything was done to be sure Kali was always getting what she needed. And her team always made sure that as her mother I was heard.

I was told that Kali would need to go home for hospice care if she didn’t receive a double lung transplant. We found a transplant center in Houston to perform the difficult surgery do the transplant. After a delicate recovery period, we came back home just after Kali celebrated her first birthday.

While there were other hospitals, doctors and nurses that helped care for Kali, Children’s, including the team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic, always has been the place where we received the best and greatest care.

Kali at Children's

Kali at Children’s

Kali is 8 now, but we have never been far from Children’s. We’re here multiple times a month for appointments and have a few hospital stays a year dealing with Kali’s ongoing conditions.

The Children’s staff have made Kali feel so comfortable with all she has to deal with in her life, and she loves everyone at the hospital who cares for her. I feel so blessed to have such a wonderful place to call our second home that is able to make my child feel like such a normal girl given all of her circumstances. We forever will be thankful to everyone who makes Children’s such an amazing place.

Kali continues to visit Children's for checkups on a regular basis.

Kali continues to visit Children’s for checkups on a regular basis.

Introducing new podcast, ‘Children’s Pedcast’

Starting today, we’re happy to share with you our new podcast, “Children’s Pedcast,” a conversation about pediatrics.

subscribe_blog“Children’s Pedcast” — “Pedcast” for short — is a weekly podcast by Children’s Hospitals and Clinics of Minnesota about pediatric health information, issues and concerns, featuring guests made up of experts from Children’s, The Mother Baby Center, Midwest Fetal Care Center and other individuals connected to Children’s, including doctors, nurses, other health care experts, patients and patient families.

The show is conversational and loose with a goal of providing information and an enjoyable, entertaining listener experience.

A new episode is available for download each Monday and can be heard on iTunes, Podbean, StitcherYouTube, Vimeo, all of Children’s social media channels and everywhere podcasts are available.

Meet Madeline

Madeline

What Madeline loves most about Children’s is that they care for her.

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: Madeline

Age: 7

Hometown: Elk River

Madeline has received care from Children’s for heart surgery and C. difficile, a bacterial infection.

When Madeline grows up, she wants to be a house designer and build a house for her parents.

What Madeline loves most about Children’s is that they care for her.

Meet Aden

Aden

What Aden loves about Children’s is his nurse, Linda, who he says is “the best nurse in the nurse history!”

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: Aden

Age: 8

Hometown: Eagan

Aden came to Children’s due to inflammation on his pancreas. He had a cyst removed from his bile duct.

When Aden grows up, he wants to be a doctor because he enjoys school.

What Aden loves about Children’s is his nurse, Linda, who he says is “the best nurse in the nurse history!”

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 “Bean’s 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 “Bean’s 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: “Bean’s 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.