Category Archives: Patient stories

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

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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.”

The ‘funnest’ place in the hospital

Grace Vokaty loves the Child Life Zone at Children's — St. Paul.

Grace Vokaty loves the Child Life Zone at Children’s — St. Paul.

Grace Vokaty

When I was 7 years old, I came to Children’s – St. Paul because I had type 1 diabetes. When I was in the hospital, I was sad because there isn’t a cure for my disease. But then I was invited to visit the Child Life Zone, which was made possible by Mr. Garth Brooks and his friends at Teammates for Kids. The Zone is so fun, and now whenever I see the doctor, I tell my parents that we have to stop and play.

subscribe_blogI enjoy coloring and painting, air hockey, video games, the photo booth and lots of other stuff. I like that it’s a fun place to go while I’m at the hospital. And when I’m not feeling happy, it cheers me up.

Plus it’s nice to meet other kids like me who are patients, too. Even my parents enjoy it because I can play there while they are taking classes and learning how they can help me with my diabetes.

In November, I had the chance to meet Mr. Brooks and to tell him thank you for building the Child Life Zone. I told him that it is the “funnest” place I have ever been and that he did a really great job. It makes me happy to know that people from all over care about kids at Children’s, and I hope that when other kids go there it makes them smile.

Grace Vokaty is a patient at Children’s Hospitals and Clinics of Minnesota.

The trouble with toe walking

Casts

If there’s limited motion in the ankle and a child is consistently toe walking, he or she is put in serial casts or carbon-fiber braces.

Toe walking can seem cute, at first. But if it persists after a child is about 20 months old, it can be a problem.

Toddlers develop a heel-toe walking pattern about 20 weeks after they begin walking alone and no longer should be toe walking, said Nicole Brown, DPT. If left untreated, toe walking can lead to future injury or pain in your child.

“I think with little ones, everyone thinks it’s adorable because you don’t know if it’s causing problems,” said Sara McGrane, whose daughter, Molly, started seeing Brown when she was 5 years old.

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CHILDREN’S GRAND ROUNDS: New evidence in toe walking

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At her daughter’s checkup when she was 3, the primary care physician told her parents they needed to encourage her to stop walking on her toes, McGrane said. When she was 4, the parents were told again to keep working with Molly. It was at her visit when she was 5 that her primary care physician noticed she was toe walking and referred her to the Children’s Rehabilitation Clinic in Minnetonka.

subscribe_blog“When she was little, it was cute,” she said. “She had always been a toe walker.”

Often, Brown doesn’t see patients until they’re 6 or 7 years old. There’s a misconception that kids will grow out of toe walking, she said. Those who are seen at 2 or 3 years old have a better prognosis, and treatment time generally is shorter. She has treated patients as young as 18 months and as old as 13.

“We want to get these kids in earlier,” she said. “By the time they’re 6 or 7, they can have structural damage to their foot.”

Treatment varies and depends on the severity of the condition. If Brown can see a patient before there’s limited range of motion, she can retrain the child to resume a normal walking pattern through physical therapy, which on average lasts six months, she said.

If there’s limited motion in the ankle and the child is consistently toe walking, he or she is put in serial casts or carbon-fiber braces, she said. The serial casts are like a typical fiberglass cast for a broken leg. They’re taken off every week and put back on to accommodate the new range of motion that was achieved. Once a child’s motion improves, Brown uses ankle braces. Physical therapy also is part of the prescription and on average lasts about a year.

In Molly’s case, her heel cord was tight enough that she required bracing, McGrane said. She met with Nicole for physical therapy for about 10 months.

“We were amazed at how quickly the process went,” McGrane said. “We are big believers in the program.”

What is toe walking?

Toe walking is a diagnosis in which a person walks with bilateral toe-to-toe walking pattern. There may be a medical cause or it may be idiopathic in nature.

How does Children’s treat patients who toe walk?

  • We offer serial casting, orthotic intervention and physical therapy treatment for treatment of toe walking.
  • Serial casting has been proven to be an effective intervention for toe walkers in treatment of tight heel cords to increase the range of motion and to also weaken the heel cord muscle to allow us to retrain the child’s walking pattern.
  • Children’s and Orthotic Care Services have designed a new type of solid ankle foot orthotic that mimics serial casts for treatment of toe walking.
  • The orthotic brace is a two-pull carbon-fiber solid ankle foot orthotic. The carbon fiber on the outer shell decreases the amount of available multi-planar ankle motion, which mimics the effects of serial casting through increasing range of motion through the heel cords as well as weakening the heel cords but allows the child more flexibility in that they can take off the brace to shower or participate in certain activities.
  • After serial casting or carbon-fiber-bracing intervention has been completed, children are then placed in a two-pull plastic ankle foot orthotic to retrain their gait pattern to allow for a consistent heel-toe walking pattern.

Children’s research in toe walking

We compared outcomes in treatment of toe walking gait with carbon-fiber-orthotic intervention and serial casting. Children were enrolled in this study, and results have shown good outcomes. The research study offers financial assistance as well as a team approach in the treatment of a child’s toe-walking pattern.

Kangaroo Care a tranquil experience for parent, child

Newborn Azarias has skin-to-skin contact with his mother, Veronica Engel, as part of a Kangaroo Care exercise. May 15 is International Kangaroo Care Day.

This month, the Neonatal units in St. Paul and Minneapolis are celebrating the importance of Kangaroo Care, a technique where an infant is held skin to skin with mom or dad. Kangaroo Care promotes bonding, provides comfort for the baby and parent and has potential to improve a baby’s medical condition. In honor of International Kangaroo Care Awareness Day, May 15, a mother shares her experience holding her newborn son skin to skin.

Veronica Engel of Chippewa Falls, Wis., holds newborn son Azarias skin to skin as part of Kangaroo Care.

Veronica Engel

My husband and I found out at my 10-week ultrasound that we were having a baby boy, but we also found out that our son, Azarias, had a birth defect called gastroschisis.

Due to his condition, doctors informed me that I wouldn’t be able to hold Azarias until after his surgery. This had me worried because I was afraid of missing out on that special bonding time that you immediately have with your newborn. When he was born, I was able to put him on my chest momentarily but then he had to be rushed off in an isolette to be prepared for his stay at the hospital until the doctors could perform the surgery he needed.  He was staying in the neonatal intensive care unit (NICU) at Children’s – St. Paul, which has private rooms. I am grateful for this because it allowed me to stay in the room with him around the clock.

subscribe_blogI wasn’t able to hold him for the first week of his life due to his condition; however, I was able to hold his hands and feet or rub his head. After his surgery, I was able to hold him the next day. This was special because I got to hold him skin to skin; I held him for three hours straight. It was relaxing and soothing for both of us to be able to have this closeness, which we weren’t able to do at the beginning of his life. I continued to stay with Azarias in the NICU, and each day I would hold him once or twice using skin-to-skin – anywhere from an hour to three hours at a time.

The doctors told me that he was doing excellent for his condition. Not only was he gaining weight at a good pace, but he also was moving along quickly for what he was able to consume and digest.

When I’m holding Azarias skin to skin, I don’t even notice the time fly by; it’s such a relief to be able to help calm and comfort him just by this simple action. Kangaroo Care truly is a tranquil experience for parent and child and has helped us build a lasting bond with each other. I believe that being here and holding him skin to skin has made a difference in Azarias’ ability to recover and heal from this whole ordeal.

Coordinated care with heart

Sam and Stacey Schumann

Sam Schumann, pictured with his mother, Stacey, was born with hypoplastic left heart syndrome.

Stacey Schumann

I was 20 weeks’ pregnant when my husband and I learned that our son, Sam, had hypoplastic left heart syndrome (HLHS) — a severe heart defect. As parents, we were devastated that our child may not make it to his birth, and if he did, may not have the best life after he was born.

subscribe_blogBut Children’s Hospitals and Clinics of Minnesota calmed so many of our fears. Sam’s care team, including a pediatric cardiologist, perinatal physicians and nurses, surgeon, and many more have been with us since the beginning, helping us navigate this scary diagnosis. And every time Sam has undergone an open heart surgery — five so far, each represented by a heart on his monkey — we’ve found great comfort in his team’s extensive work with HLHS, knowing that they have been at the forefront of ways to treat this complicated condition.

By working together, our team has made our visits to Children’s better than expected. They’ve empowered us to be part of Sam’s care, and we are able to influence important decisions that have ultimately helped him feel better. I am amazed that everyone has said how grateful they are to help Sam, but I don’t think they realize how amazing they are and how grateful we are for them. They have given our son his life; they have helped us be a family.

Stacey Schumann is the mother of Children’s patient Sam Schumann.