Category Archives: Patient Stories

The road to a cystic fibrosis diagnosis for Kyra

By Amy Schwanz

My daughter, Kyra, was diagnosed with cystic fibrosis (CF) in September 2004 when she was 3 months old. She was diagnosed through a sweat test done at Children’s Hospitals and Clinics of Minnesota in St. Paul. It was Kyra’s “failure to thrive” that prompted the sweat test. Since other possible causes of her inability to gain weight were ruled out, it was the natural next step/test. After Kyra’s pediatrician gave Mark and me the test results and diagnosis, he comforted us, explained the disease at a high level, and informed us that we were fortunate to live near two excellent CF Care Centers. He also immediately scheduled an appointment for Kyra at Children’s Respiratory and Critical Care Specialists (one of those two excellent care centers).

Mark, Kyra and I met Cindy Brady and Sandy Landvik at Children’s Respiratory and Critical Care Specialists (CRCCS) the morning after Kyra’s sweat test and diagnosis. That first visit, Mark and I were educated about CF, and Kyra had a physical exam. Specifically, Cindy explained the genetics behind the disease and how CF impacts different areas of the body. This helped us understand how the disease resulted in Kyra’s failure to thrive. At that first visit, we were given the option of having Kyra be an inpatient at Children’s in Minneapolis for a few days for testing and education, or for Kyra to continue as an outpatient, which meant we would come back to the clinic/hospital every few days for testing and education, spread out over a few weeks. Since we had another young daughter at home, we elected for the outpatient option. We brought Kyra to CRCCS quite frequently. At first it was every few days and then the time between visits extended as Kyra became healthier, with the visits happening weekly, and, finally, monthly. Although this happened nine years ago, I can still recall how patient, comforting, and reassuring the entire CRCCS staff was with us during those first visits. It was a very difficult time for us, but it would have been much worse without the support and care of the CRCCS staff.

Following the treatment plan prescribed by CRCCS, Kyra VERY rapidly gained weight and finally looked like a healthy baby with pink chubby cheeks. She also didn’t cry as often, slept better, and became a much happier baby. This change literally happened in days; it was amazing!  Over the course of the first few months, Kyra had several diagnostic tests done (chest X-ray, blood work, etc.) to determine her health status. Although these tests were important, more vital was for Mark and I to learn how to care for Kyra. It is not easy to care for a child with CF and it takes a lot of time to learn it all.  We learned the how and why of everything we did for Kyra – from pancreatic enzyme replacements to bronchial drainage techniques. We also worked with all of the CF care team members associated with Children’s to get the specific information about respiratory care, nutrition, etc.

Over the past nine years, our family has fallen into the routine of life with CF. Kyra has certainly had some ups and downs, as is to be expected with a chronic life-limiting illness. But, for the most part she has remained very healthy, and Mark and I are successfully managing the many challenges–medications, respiratory treatments, clinic visits, school health plans, travel considerations and medical bills. Kyra continues to have appointments four times per year at CRCCS, with one of those being her “CF annual visit” where we meet with the entire CF care team. Over our many visits to the clinic and Kyra’s one inpatient procedure (sinus surgery) in 2009, we have become very familiar with Children’s and CRCCS. I cannot say that every interaction at the hospital and clinic over the years has been perfect, but I can say that from the office staff, to surgical staff, and certainly to our great CF care team, I am frequently impressed with the level of care Kyra receives. The CF care team works closely with us to do what’s best for Kyra.

In 2004 when Kyra was born, CF newborn screening was not being done in Minnesota. On one hand, I wish that Kyra would have had the screening and been diagnosed at birth so that she would not have had such a rough start to her life. However, on the other hand, while Kyra’s diagnosis was devastating, it was also somewhat of a relief for us— to finally determine what was causing her inability to gain weight and to be able to “fix” the problem and see an improvement in her health. I think of the parents whose newborns are diagnosed, they must not have that sense of relief that we did and I think that would make the diagnosis more difficult. But, those parents also do not have to go through the first few months of their child’s life wondering why they won’t gain weight and they can get started on treatments right away, improving their outcome. I empathize with parents whose children are diagnosed with CF – at birth or later in life –because no matter when the child is diagnosed, it is a devastating diagnosis. It is a challenging road they will travel. Fortunately, with Children’s CF care team, they will, like us, have an excellent medical support system to help us along that road.

 

 

 

A lifetime of love for baby Nora

By David Hlavac

My wife and I are now members of that exclusive club that nobody wants to join: Parents who have lost a child. But through our grief, the staff at Children’s neonatal intensive care unit (NICU) made a terrible experience a little bit less unbearable by focusing first on the comfort of our newborn daughter, then on our family’s emotional health and well-being.

At 30 weeks gestation, we realized there might be some issues with our daughter — there were “soft markers” for some sort of genetic anomaly, but without further tests we couldn’t be certain about her prognosis.

At 35 weeks, we had a scheduled c-section delivery and our daughter, Eleanor Theresa, was born. She weighed just over 3 pounds. After I cut the cord, I heard a faint cry, then silence. The doctors whisked our daughter to an adjoining exam room, and when the nurse opened the door to say, “We need the father.” That was when I realized this story wouldn’t have a happy ending. In my mind, I remember thinking,” Please let her live — please let it be Down Syndrome or something…anything that isn’t a death sentence.” But when the neonatologist said he suspected our daughter had Trisomy 18, I knew we would be saying our goodbyes to Baby Nora very soon.

Once I broke the news to my wife, who was still on the operating table, I sat down with a neonatal nurse who explained a few possible scenarios to me. She did not sugar-coat things, but she was warm and understanding — a perfect balance that (in hindsight) probably prevented me from a rollercoaster ride of emotions.  It is hard to reconcile the joy you feel as a new parent with the grief of knowing your child is not going to survive, but our nurse emphasized how lucky we were that our daughter was born alive, and how we should make the most of our time with her. So while my wife recovered from her surgery, I camped out in the NICU and crammed a lifetime of love into my daughter’s brief life.

The NICU nurses didn’t look upon me with pity, and they didn’t question me when I asked to hold my daughter. They simply told me they were there to help however they could. Despite being on a ventilator, they gently moved Nora out of her isolette and placed her in my arms. I rocked her and sang to her, holding her tiny body skin-to-skin the way I had done with my surviving children when they were first born. It gave me the fleeting feeling that everything was normal and just for a moment, I simply felt like a proud dad again.

Before it came time to take her off the ventilator, the nurses prepared an array of keepsakes for u– plaster-cast footprints, a lock of hair and a photo session with Now I Lay Me Down To Sleep. They connected us with a social worker who helped prepare us for the overwhelming grief that was welling up inside our hearts. They encouraged us to bring our families — including our surviving children — to the NICU so they could all meet Nora. Each of these activities are now etched in our memories as milestones in our daughter’s short life, and we are so grateful for the entire NICU staff at Children’s for making those remembrances possible and giving us an honest, non-judgmental and compassionate experience. Despite our grief, we will always remember the care the nurses, doctors and social workers at Children’s Hospitals and Clinics of Minnesota showed for our family. Just as we will never forget Nora, we will never forget their love and respect.

This post was originally published via Share Your Story. Do you have a story, too? Upload it here.

Jeffrey Steffensen to ‘Lead The Team’ at Vikings game

Jeffrey Steffensen

As the proud sponsor of the Mini Vikings Kids Club, at each home Vikings game, a Children’s Hospitals and Clinics of Minnesota patient “Leads The Team.” This week, sixth-grader Jeffrey Steffensen is leading the team onto the field before the Vikings face-off with the Cleveland Browns.

Jeffrey was diagnosed with Crohn’s disease when he was 6 years old and has battled pneumonia 23 times. His claim to fame? He once conned a nurse into thinking he only drank flavored water.

He’s the youngest of five children and is the “trooper” in the family. He loves listening to music, playing on his X-Box, fishing and drawing. His favorite Viking is running back Adrian Peterson.

We welcome Jeffrey and his family to this week’s “Lead The Team” event.

Honoring Kayleen’s last wish

Kayleen Larson will forever be 9 years old.

Earlier this year, Kayleen passed away from leukemia. But, her life continues to be celebrated. On Sept. 16, neighbors, friends and the Children’s family came together at Children’s in Minneapolis to honor what would have been her 10th birthday – and her last wish.

She was a huge fan of Star Studio and the Dude, and she asked that every year on her birthday, her family stock Star Studio’s shelves with toys for patients. Toys arrived by the truckload on her special day. 

“Kayleen liked to have fun, and we liked to have fun together,” the Dude said 

The tradition started a year ago. When Kayleen turned 9, she asked for prizes for patients instead of presents for herself.

“We’re not done. This will go on,” the Dude said.

Thee Viking World Order will host its home opener party in honor of Kayleen on Friday and will collect gifts. Learn more here about the event.

Support Caring for Kayleen Legacy: Fight Like A Girl.

Watch friends and family sing “Happy Birthday” to Kayleen.

 

De’Angelo Boyd to ‘Lead The Team’ at Vikings game

As the proud sponsor of the Mini Vikings Kids Club, at each home Vikings game, a Children’s Hospitals and Clinics of Minnesota patient “Leads The Team.” This week, 17-year-old De’Angelo Boyd is leading the team onto the field before the Vikings face-off with the Tennessee Titans. This is the first in-stadium Vikings game for De’Angelo, his brother Dejion and cousins Marquis and Latoya.

De’Angelo is a high school junior and enjoys playing basketball and hanging out with his friends. In the midst of school and activities, De’Angelo comes to Children’s twice a month for treatment of sickle cell disease – a hereditary blood disorder that he was diagnosed with at 4 months old.

We welcome De’Angelo and his family to this week’s “Lead The Team” event.

Preparing for school when your child has a food allergy

Missy Berggren’s preparation for her daughter’s upcoming entry into kindergarten started long before school supplies hit the shelves at Target.

Her daughter, 5, has severe food allergies to eggs, milk, peanuts, tree nuts and shellfish. Exposure can be deadly. So, Berggren, a parent advocate and board member of the Food Allergy Support Group of Minnesota, set out to safeguard her daughter beginning with researching school policies and practices before deciding on a school, and, then, partnering with the school administration and teacher.

“My goal is to empower my daughter to live as normal of a life as possible, with some extra planning to make sure she is safe and feels included. We always plan ahead to avoid a food allergy reaction but also need to be prepared if something happens,” Berggren said.

Berggren was most attracted to a school that does not use food in the curriculum and where there are wellness policies in place that limit or don’t allow treats on birthdays and holidays. Most schools in Minnesota still allow that, Berggren said. Her daughter will eat lunches packed at home at a peanut-free table, and will be reminded never to share food with other children.  

Berggren is working with the Kindergarten teacher to make sure classroom snacks are safe for her daughter. She also shared books from her personal library, such as the “Alexander the Elephant” series about food allergies, which the teacher plans to read to the class.

Her daughter recently spent four days at the school’s KinderKamp preparing for kindergarten. When Berggren dropped her off, she reviewed the allergy action plan and emergency medicines with the teacher. All the students washed their hands with soap and water when entering the classroom.

Before school begins in the fall, the family met with an allergist to review the child’s medical condition and to have the appropriate paperwork filled out for school. A special school meeting is planned with the principal, school nurse, teacher and other key staff to talk in detail about the child’s food allergies, how to spot and treat a reaction, and how to make sure she feels  physically and emotionally safe.

While food allergies are becoming more common — one in 13 kids has one, which equals about two kids per classroom – there is still the danger of being picked on or teased.

When other kids ask her about eating different food, she often says, matter-of-factly, that she has food allergies and needs her own food, Berggren said.

“In her mind, she’s a normal kid and she doesn’t want the emphasis to be on her food allergies and neither do I,” Berggren said. “I work really hard to make sure she feels included and that at this age, 5, she doesn’t feel treated differently.”

Here are some tips on how to navigate school with food allergies. Here are more age-specific tools to teach kids about food allergies. Here are suggestions on how to navigate the holidays with food allergies.

This post also appeared in the Star Tribune‘s kids’ health section.

Patient determined to change the future for those with hydrocephalus

By Olivia Maccoux

Team Liv WALKS for hydrocephalus research.

I was born at 29 weeks and was diagnosed with a condition called hydrocephalus (abnormal amount of spinal fluid in/around brain). I’ve lived with and dealt with the condition for the past 17 years and will continue to for the rest of my life.

A life with hydrocephalus means NOTHING is certain. It is both physically and emotionally draining on me and everyone around me. This is a life threatening condition, and the sad part is the lack of research that is being done to help the over one million Americans who live with it. Treating hydrocephalus costs more than $1 billion annually, yet, the National Institute of Health invests approximately only $1 million a year on hydrocephalus research.

Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and absolutely no progress toward prevention or a cure. The only treatment is brain surgery, where a surgeon implants a device called a shunt to drain the fluid. However, 50 percent of shunts fail within two years.

I’ve never had a shunt last for two years. I’ve actually had times where the shunt has only lasted a few hours, which resulted in my immediate return to the operating room for a new one. To date, I’ve endured more than 90 brain surgeries and have been in critical condition because of hydrocephalus.

The Hydrocephalus Association organizes WALKS every year to raise money for treatment and research. I’m determined to help change the future for everyone who struggles with hydrocephalus and its complications.

My WALK team, Team Liv, is also committed to helping this cause. We’re looking for anyone who would like to walk with us, donate, or both! Donations of any size are gratefully received and are tax-deductible. Your donation will help support critical research so that I and the one million other Americans living with the challenge of this condition can lead a better life. Learn more about donating.

Olivia is a patient and a Youth Advisory Council member. Read Olivia’s blog post earlier this year on juggling school during a hospitalization.

Joseph Wald, 8, to ‘lead the team’ at Vikings game tonight

Joseph Wald, 8, to lead the Minnesota Vikings onto the field

In this season’s first “Lead The Team” event with the Minnesota Vikings, 8-year-old Joseph Wald is fired up to attend his very first Vikings game tonight. His mom (Karin), dad (Dave) and brother (Aidan) watch a lot of sports at home; so, to be on the field with the players will be quite an experience for the Wald family.

Joseph was born with Morquio Syndrome, a type of rare, genetic enzyme storage disorder. Because its symptoms are not usually noticed until about 3, he wasn’t diagnosed until just before his fifth birthday. The disorder is so rare, that at the time of diagnosis, no treatment was available. In June 2012, Joseph was invited to participate in a treatment study based in Chicago so that he could receive infusions of the synthetic enzyme that his body doesn’t produce. After a year of flying hundreds of miles back and forth every week for an entire year, Joseph started working with Children’s Hospitals and Clinics of Minnesota this past June. He now receives his weekly infusions a lot closer to home.

Turning 9 this weekend, Joe enjoys riding his bike, playing street hockey with the neighborhood boys and LEGOs, and reading Percy Jackson books in his spare time. His favorite pastime is anything involving electronics (Wii, X-Box, iPad, PlayStation). He can also hold his own against most adults playing chess and backgammon.

We welcome Joseph and his family as our first participants in this year’s “Lead the Team” event.

The silent killer: How a near drowning impacted two families

Cooper Whitfield

No one heard 4-year-old Cooper struggle, splash, or cry for help. That’s because he didn’t.

A year ago last June, Cooper’s mom, Christie Whitfield, took Cooper and his two siblings, Molly and Kendall who were 7 and 1 at the time, to a private neighborhood pool. What began as a joy-filled, sun-soaked afternoon nearly ended in tragedy.

The hot weather drew dozens to the pool. The chairs near the shallow end of the pool were taken, so Whitfield found a seat near the deep end where she could apply sunscreen on Kendall.

Meanwhile, her oldest, Molly, jumped into the pool with a family friend. Whitfield put goggles on her son and told Cooper, who didn’t know how to swim but could touch the 3-foot section of the pool, to wait for her by the stairs of the shallow end until she could join him.

“Buddy, wait for me by the steps,” she said.

Moments later, Whitfield turned around. Cooper was nowhere to be found.

“Where’s Cooper?” she shouted.

That’s when she saw him at the bottom of the pool. Maternal instincts kicking in, she jumped into the water and screamed to others to call 911. She pulled Cooper, blue and unconscious, out of the pool.

The following moments zoomed by in a blur.

“I just kept thinking, ‘Somebody please save my baby,’” she said. “It was an out-of-body experience, but I still kept thinking and believing he was going to be okay and that this wasn’t going to be the end.”

Whitfield was trained and had been certified in CPR. But in those moments, she couldn’t comprehend what to do, she said.

Leah Mickschl and Cooper Whitfield

Leah Mickschl did.

Mickschl, a mom of two and an RN at Midwest Children’s Resource Center, started performing CPR on Cooper. It took three rounds before he regained consciousness, she said.

“I think about it all the time,” Mickschl said.

Surveillance later showed that Cooper had jumped into the water and tried to reach a raft but missed it. He didn’t splash or gasp. Silently, he fell to the bottom of the pool. A pool that was full of adults and children who thought Cooper was just swimming underwater.

Within minutes of the rescue, police and emergency responders arrived. Mickschl stayed behind with Whitfield’s other two children so she could accompany him in an ambulance to Children’s Hospitals and Clinics of Minnesota in Minneapolis, where he was treated in the Emergency Department. While he was still in shock and remained quiet, he was breathing normally.

Cooper remained at Children’s overnight for observation so physicians could make sure there was no brain or lung damage. Today, he’s a healthy, happy 5-year-old who has returned to the water.

In a situation like a near drowning, every second counts. Police told Whitfield had it not been for Mickschl’s quick intervention, Cooper may have suffered brain damage.

“Leah is an absolute hero,” Whitfield said. “I can’t say enough about her and how calmly and quickly she handled the situation.”

Mickschl, who grew up around water, said the event has made her more aware of her surroundings when she is by water and when her two kids, 8 and 10, are in water.

She added that what happened to Whitfield could happen to anyone.

“It was an awful day that has changed my life – I look at everything differently now,” Whitfield said. “I have an appreciation for so much. Life is so precious and can change in the blink of an eye.”

The Whitfield Family

Whitfield and Mickschl share their tips for parents and caregivers:

  • Inches count. While Cooper was able to touch the bottom of the pool in the 3-foot section, he nearly drowned where the depth was only 3-and-a-half feet.
  • Always be aware and always be present. If you have to step away, ask someone to watch your child.
  • Register your child for swimming lessons.
  • Get CPR certified.
  • Always use a lifejacket. Cooper typically wore one at the pool, but it got left behind.
  • Drowning is a leading cause of death in kids ages 1 to 4. Boys are at a higher risk for drowning.
  • Drowning is silent.

Find more water safety tips here.

Read our original story about the rescue and the honor Mickschl received for her efforts.

Join Christie, Leah and our trauma team when they hand out life jackets at local parks on Wednesday, July 10.

85 days early

Clair and Reese

By Maggie Sonnek

Chadley Doering had been at work 10 minutes when got the terrifying call every dad-to-be fears. His pregnant wife, voice shaking, said only eight words.

“You need to take me to the hospital,” she said.

At 22 weeks pregnant, she was bleeding.

Mother Nature had packed a punch that February morning. Ice-covered roads and bitter cold wind gusts made the 10-mile drive to the hospital seem eternal. To make matters worse, Mary Kay Doering started having contractions. She was going into labor.

The staff at the hospital near the Doerings’ home in Silver Lake was as prepared as they could be. One nurse’s words devastated the couple.

“There’s nothing more we can do for you here. We’re sending you to The Mother Baby Center,” she said.

Paralyzed with fear, the 26-year-old was prepped for the hour-long ambulance ride to Minneapolis. And she would be making the journey alone, leaving her husband to brave the winter storm on his own.

Just 16 weeks earlier on a crisp fall day, Doering found herself alone again, this time with a smile on her face. She had just learned she was carrying twins.

But now, as she bumped along in the screaming ambulance, she could only hope and pray her babies would hang on.

When she arrived in Minneapolis, doctors and nurses surrounded Doering. She was dilated to three centimeters; just a breath away from active labor.

They were able to stop her contractions, but gave her one assignment: Stay pregnant. Doering would be confined to a bed at The Mother Baby Center for the next 14 weeks.

Through it all, husband and dad-to-be worked hard to make sure Doering felt connected to her life at home, even though she was lying in a hospital room nearly an hour away. He painted the nursery purple – the couple learned they were expecting two girls – and filmed it so she could witness each brush stroke.

On March 25, Doering, at 27 weeks and six days, felt uncomfortable. In pain. She knew the babies were coming. Her husband knew it, too. But he was at home, 60 miles away, and his car could only carry him so fast.

“For a couple minutes, I was upset,” Doering said. “But I soon realized that these babies were coming whether Chadley was there or not. Waiting just wasn’t an option.”

Doering was rushed into surgery and the babies were delivered via caesarean section one minute apart. Dad missed the birth by 20 minutes.

Devastated, he arrived just as the girls were getting adjusted to their new homes at the Neonatal Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota (NICU) in Minneapolis.

A million thoughts rushed into his mind as he saw his babies for the first time. He slowly made his way to their isolettes and cautiously stuck a finger into their plastic box.

The girls, who weighed no more than a can of soup, gently tugged back. Although they were 85 days early, they still recognized their daddy.

Clair and Reese made their home in the NICU for the next 35 days before they were transferred to a hospital closer to Silver Lake.

During these long days surrounded by monitors and nurses and feeding tubes, mom and dad tried to keep things as normal as possible. But, even daily visits and email updates couldn’t take away the feeling that something precious had been stolen from them.

“The time in the hospital and NICU was nearly impossible. I wouldn’t wish it upon my worst enemy,” she said. “And yet I would do it all again in a heartbeat.”

On Sunday, May 19, one month before their actual due date, the Doerings got the news they’d been waiting for. The girls were finally able to go home. No breathing tubes, no isolettes, no monitors.

They could finally sleep in their purple-painted nursery.

“Being a mom puts everything into perspective,” Doering said. “It’s an incredible feeling to be a parent.”

This post originally appeared on the Great Beginnings blog.