Category Archives: Patient Stories

How kangaroo care came to the United States: One mom’s journey

Chris Clark was 23 weeks pregnant, on bed rest after her water broke, and had been given little hope of having a viable pregnancy.

A mom of three kids already and a natural protector, she wondered, if her child was born, was there something she could do to enhance his chance of survival? Bed rest gave Clark, who had a background in respiratory therapy, time to research.

She landed on an article in the magazine, Mothering, about kangaroo care in Colombia. Kangaroo care is the practice of holding your newborn baby skin to skin, which provides benefits to both the parents and the child. It helps premature babies develop. At the time – 1989 – kangaroo care wasn’t being practiced in the United States.

“I read the article through and thought, ‘Oh, my gosh, they’re holding babies skin to skin and the babies are doing better,’” she said. She contacted a researcher listed in the article, shared her condition with her and asked for medical literature supporting kangaroo care. The researcher sent the information overnight – she doubted Clark had much time before delivering.

Hours after getting the literature, Clark was rushed to United Hospital where she gave birth to Danny, who arrived at just 29 weeks on May 7, 1989. He was taken to the neonatal intensive care unit (NICU) at Children’s Hospitals and Clinics of Minnesota in St. Paul.

Danny, born on May 7, 1989

As soon as Danny was born, Clark started asking the neonatologist, Dr. Mark Mammel, if she could try kangaroo care.

“I was interested and also cautious. Maybe it’s growing up in the ’60s, but it seemed like a good idea. Parents holding babies – rocket science? No. But we all worried about the issue of temperature control, monitoring, airway obstruction, and so on,” Mammel said.

Clark persisted. “I asked every day if we could please, please try it,” she said.

Five days after giving birth on Mother’s Day, Clark held Danny for the first time. There were two crash carts and two resuscitation teams nearby – ready in case anything went wrong, she said.

“It was crazy. (Some of the staff) appeared terrified,” she said.

But the minute Clark started holding her son, terror and fear disappeared. She found only comfort and connection.

“It made me feel like his mom,” she said. “It was like I was in my own world with him.”

“Chris was very smart about the process. She initially saw the technique mentioned in a magazine…which I was familiar with as a fringe publication. It was not a great source for me to rely upon. Chris knew this!” Mammel said. “She gathered the actual medical literature – though there wasn’t much – and brought it to me and the group to review. Like all change in a NICU setting, a champion is needed to bring others along. I liked what I read – kangaroo care looked safe and probably beneficial, as well. So I became that champion, working with my partners and the nursing staff to pave the way for Chris to be the first.”

Clark holds Danny skin to skin

Initially, Clark spent about 30 minutes twice a day using kangaroo care.

Danny ultimately spent about nine weeks at Children’s. During that time, he needed nine blood transfusions, experienced numerous spells where he stopped breathing, and early on required a ventilator and 100 percent oxygen.

Prior to leaving, Danny required hernia surgery. Clark held her son for about 24 hours before the operation.  The anesthesiologist visited afterwards to tell her Danny was the “most relaxed baby” he had worked with in his years of surgery.

Danny just turned 24. He’s run a marathon, has no lung or sight problems and is a singer/songwriter, Clark said.

“I believe Danny is who he is because of kangaroo care,” she said.

Kangaroo care is now a standard practice at Children’s and beyond.

“I’m a fairly strong advocate and a fighter for what I think is best for my kids. The fact that it has helped other kids feels like this might be the purpose of my life and, It’s enough,” Clark said. “I was blessed to have enough people that believed in and supported us.”

Today marks International Kangaroo Care Awareness Day – a day we celebrate at Children’s.

“We had always seen ourselves as ‘family-friendly’ – trying kangaroo care was a way for us to really walk the walk. We became recognized around the country for this, though it was never a focus of our research efforts. Others took on that task,” Mammel said. “Today, all our families benefit from this practice, which is as routine as turning on the lights in the morning.”

A letter to nurse Kelli

By Emily Steffel Barbero

Today’s children are born into diverse families, both big and small. Grandparents (even great-grandparents), siblings, aunts and uncles, cousins, step families, half families – the family tree can boast many branches.

But not all children are blessed with nurses for family.

On a frigid and snowy January morning, our son, Ziggy, made up his mind to arrive at just 30 weeks. He had a mess of black hair, and he was a true wriggler.  His first cry burst my heart open like a firecracker, breaking it up into a million little pieces of joy that rained all over inside me.  We posed for one brief photo opportunity and then he was promptly admitted to the Special Care Nursery. It was in the nursery that he was cared for by many fabulous nurses, including Kirsten, Martha, and Kelli. Today I want to tell you about Kelli.

Sometimes when people ask me how long we were in the nursery, I tell them Ziggy lived in the nursery for 64,800 minutes (six weeks). As Ziggy’s primary nurse, Kelli was by our side for thousands of those minutes.  On any given day I would spend 720 minutes or more by Ziggy’s isolette, watching him sleep and cry and stretch and kick and try to free himself from the IV jabbed and taped into his ankle or foot or arm. Kelli taught me how to dab Vaseline on his lips when they cracked and position his head so his airway was clear. She patiently taught me how to pick him up when he had more cords attached to him than Clark Griswold plugged into his home at Christmas time. She made me smarter, making sure I understood all of his procedures, even checking up terms with me online. Every inch of his skin, literally, was touched for and cared by so preciously by a woman who had otherwise been a complete stranger to us.

After about 20,000 minutes, I began to notice how his eyes would seek out her voice when she entered his room. I would watch how he’d snuggle into the nook of her shoulder when she burped him, or smack his lips against her gloved knuckle when he was hungry.  When she talked with him, her voice was tender and sweet, with the tone of a healer and a mother and a cohort. She sat watch over his isolette, she fed him, she held him as he literally grew in her hands over time. Many mothers might be jealous of a relationship like this, and I would understand it. But I never was. I considered it an unbelievable honor that this woman was in my son’s life.

Toward the end of his stay, Ziggy surprised everyone by suddenly falling ill with a serious gastrointestinal illness with a high mortality rate. By that time, so many minutes had passed that Kelli knew Ziggy inside and out.  She was able to spot the symptoms when they were still minor, and, because of her attentiveness, an x-ray was given, treatment was started, and my son’s life was probably saved. It was an incredibly emotional time for me. One morning I collapsed into a chair by his isolette, completely beside myself with worry and sadness (and lack of sleep and physical energy). I just wanted someone to tell me when he was going to get better.  It was all I wanted that day, it was all I wanted for so many of those minutes we lived through. I just wanted someone at the hospital, anyone, to tell me he was going to get better.

Kelli didn’t do that.

Instead, Kelli hugged me that day, picked me up enough to keep moving forward.  She entertained me with conversations about reality television.  We looked at photos from blogs about Wal-Mart shoppers and discussed recipes for the CrockPot. We swapped movie recommendations, urging us to stop at a Redbox and watch a movie she and her husband loved (it actually turned out to be half decent).  She gave me fashion advice and we talked how I might recover from bang regret with my new haircut. She talked me through those 900 minutes, and the next 720 minutes after that, and the next 720 minutes after that. All while we checked his temperature dutifully, changed his diapers, monitored his central line, snuggled him through his hunger pains. But she never once told me he was going to get better.

She told me I was going to get stronger.

You know what? I’m proud to say I did. And my husband did. And my son did, too.

After all those minutes together, I realized I didn’t need false promises from anyone that my son was going to get better. Because the little boy who could turn my heart into a firecracker had more strength in his 3-pound body than a 300-pound lion. That was all that mattered.  No need to worry about future minutes when time is so precious right now. None of those minutes in the nursery ever got easier from one day to the next. But each day, with Kelli, we got a little more light-hearted, a little wiser, a little stronger.

You can’t just call Kelli a nurse.  Kelli is family.

Mason’s story: How to cope when your sibling is the patient

By Mason Stoltz

My brothers and I were not expecting to be without a mom and dad for 99 days. But that’s sort of what it felt like when my sister was born extremely prematurely. Suddenly, our world was turned upside down and we had to take on a lot more responsibility than we were used to. When my parents weren’t at work or asleep, they were at Children’s. So, as you can imagine, it dramatically changed things for the three of us kids who were at home.

Mason holds his sister, Katie, for the first time.

Here are some of the ways we learned to cope with our “new normal”:

  • My older brother met with a counselor at school. This gave him someone to talk to at school who really knew what was going on in our family. This person was able to offer suggestions on how to deal with stress and still stay on top of things at school.
  • We read books as a family that helped us all to understand what was going on in the neonatal intensive care unit (NICU) where my sister was and a little bit more about the challenges she was facing.
  • We visited Children’s often and took advantage of the awesome services that are designed for siblings and family members. For example, did you know there is a Sibling Play Area at the Minneapolis location loaded with fun toys and activities for siblings to play with? It is open to siblings of a Children’s hospital or clinic patient, ages 2 years and up.  Siblings can be checked in for up to 1 ½ hours, twice a day. The staff there was super nice and had really great activities and crafts for us to do.
  • We would make things for my sister.  All patients at Children’s have their own private room and it is meant to be their “home away from home.” We had a lot of fun drawing pictures and making get well posters that we could hang in my sister’s room. I hope it cheered her up and let her know we loved her. I think the nurses and doctors were able to get a better insight into our family by personalizing her space a bit.
  • During my sister’s hospitalization, we had a plastic box at our house that we pretended was an isolette (like the one my sister was in at the NICU). My 4-year-old brother liked to pretend he was a doctor and took care of his teddy-bear patient, the way the doctors and nurses were taking care of my sister. If you want more ideas about how to creatively and simply teach kids about the complex issues and procedures that happen at a hospital, talk to a Child Life Specialist. They are a wealth of information and some of the most valuable people at the hospital, in my opinion!
  • I liked having my own picture album of my sister that I could show to my teachers and friends. It almost became a morning ritual in my classroom for me to share the latest developments with my sister. It felt nice to be able to educate my friends about her situation and I felt their support as a result.

I hope these suggestions might come in handy for you if you have a sibling in the hospital. Just remember, even though your sibling might look different in the hospital, they are really the same person.The more you can do to still interact with them the way you would if they were at home, the more comfortable you both will feel. Many times you can still play a game, watch a favorite show, share jokes over the phone, make paper airplanes, do a craft, celebrate a birthday, and make a memory even while they are going through something difficult. You can be a part of their prescription back to health.

Mason, 13, is a member of our Youth Advisory Council

Five Question Friday: Sheralee Leonard

Meet Sheralee Leonard, one of our social workers at Children’s Hospitals and Clinics of Minnesota.

Sheralee Leonard

What does a typical day look like for you? Being one of the social workers in the neonatal intensive care unit (NICU) on the St. Paul campus, my daily routine includes meeting with parents and extended family members of medically fragile and sick infants. I provide ongoing support while the baby remains hospitalized.

We often talk about ways they are making connections with their infant and how they are feeling about the experience, as attachment can be more difficult with a baby who is in an isolette, connected to wires, and may not be able to be held or tolerate much stimulation. I also listen to the families tell their stories and explore ways for them to cope in a healthy and healing manner.

Assessment for postpartum depression is also crucial in the NICU. Mothers and those they are getting support from are both educated on the risks and symptoms of postpartum, and I check in with mothers regularly on how they are coping.

Families can often have unexpected financial stressors related to needing to be away from work so they can be here at the hospital. I help families to connect with various community programs that may be able to assist them in getting baby items, or help with a rent or mortgage payment.

Considering no one day is like the other in the NICU, there are many other aspects to my job. Child protection reports are made when a baby tests positive for a reportable drug.  Behavior contracts are made and discussed with family members when unsafe behavior occurs in the hospital. This is in collaboration with security and our NICU nurse manager. I also provide grief support to families, related to their hopes and dreams for their baby which may be altered because of a medical diagnosis affecting their child’s long term functioning.  I also support families when their baby dies.

And not to underestimate the value of team, I am collaborating and communicating with the various members of the healthcare team in the NICU. We work closely together on ways to help support these families. Without the many caring and dedicated staff in the NICU, families would not be able to get the family-centered care and respect that is seen in the NICU.

What drew you to Children’s? My first experience working in a hospital was at United Hospital as a weekend/on-call social worker.  At that time, United Hospital provided on-call and weekend coverage to Children’s as well. I soon discovered how much I loved the work at Children’s, and whenever a referral came up at Children’s, I offered to take it. The connections with families, the diversity of the types of work I could do, and the collaborative relationship between the different disciplines in the hospital all drew me to Children’s.  Soon I was able to work there full time, and I haven’t left.

What do you enjoy most about working here? I truly feel honored to be allowed to accompany and offer emotional support to families going through a difficult experience related to their baby’s health.  The compassion I have seen from families, and the extent of caring from members of the NICU healthcare team, has touched my heart and soul.

What do you think makes kids great? Children are amazing! They are so intuitive and honest in their perceptions. Children possess such strength, and given a nurturing environment can flourish and get through some very stressful and difficult situations. I have been very impressed by the children and families I have worked with here at the hospital, learning more about the aspects of hope, healing and the desire for a better life.

If you could travel anywhere in the world, where would it be and why? When I was younger I traveled to Europe. I think it would be great to return. It would be fun to be among the beauty of the mountains in Switzerland, enjoy the city life in Paris, and be able to get on a train and travel to new places.

Do you have a recommendation for a Children’s employee who should be featured on Five Question Friday? Send your suggestions to Brady at

Why I march for babies

By Jana Cinnamon

I vividly remember the first time I held Sadie. She felt like she weighed no more than the purple blanket she was wrapped up in. It wasn’t at all what I imagined it would be like to hold my baby for the first time.

We sat together in a rocking chair. I was nervous to move, afraid that any movement I might make would trigger an alarm from one of her monitors. After some time, I bravely leaned down to kiss her little head and then I started to sing quietly to her.

“You are my sunshine, my only sunshine.
You make me happy, when skies are gray.
You’ll never know dear, how much I love you.
Please don’t take my sunshine away.”

With tears in my eyes and a lump in my throat, the last line of the song became my cry out to God. Please Lord – do not take her away from me.

Sadie’s early arrival was a complete shock to my husband and me. We were readying ourselves to become parents, but nothing could have prepared us for becoming parents to a preemie. Sadie’s first seven weeks on this earth were spent in the neonatal intensive care unit (NICU) at Children’s Hospitals and Clinics of Minnesota. I remember walking the halls, seeing pictures and reading stories of other babies that had been born early. There were tremendous success stories of babies that had been born decades ago at a time when the survival rates of premature and low-birth weight babies like Sadie was not nearly what it is today.


Although I still had uncertainty about Sadie’s future, reading those stories gave me an overwhelming feeling of gratefulness. I became thankful for the advances in medicine and the access we have to superior health care. I became thankful that Sadie’s prematurity and small size was not the end of her story. And I became thankful for the work of the March of Dimes.

Prior to Sadie’s birth, I had heard of the March of Dimes, but was not familiar with their mission or work. Since I became a mom to a miracle, I have learned a lot from the March of Dimes. Most of all, I learned I was not alone. In the United States, one in nine babies is born prematurely.  Yes, there can be comfort in numbers, but this is not a comforting statistic. The March of Dimes is actively working to reduce the number of premature births in the United States. Additionally, they are funding lifesaving research to support healthier babies.

Today, Sadie is five years old and has no lasting effects from her premature birth.

This spring, my family, friends and I will be walking in the March for Babies. This event is a major fundraiser for the March of Dimes and this year, in particular, is exciting as they celebrate their 75th anniversary. Participating in this event has brought me hope and healing. My favorite part of the walk is the last mile – “Mission Mile” – where signs are posted along the street featuring babies that entered this world too early.

My daughter, born 10 weeks too soon and weighing 1 pound, 9 ounces, is a fighter. She has inspired me to fight for healthier babies. Will you walk with me?

Find more information at Children’s is proud to sponsor the Twin Cities March for Babies Walk on April 28.

Patient to patient: How to manage school work when you’re hospitalized

Olivia, Youth Advisory Council member

By Olivia Maccoux

I’ve been a patient at Children’s my entire life (17 years). I’m also on the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. This is my eighth year as a part of that. YAC is a group of kids and teens who are either patients at Children’s or family to patients here. Our job is to make the hospital a better place to stay and to heal. Because of our experiences, we all understand that the hospital is not where anyone wants to spend their time, but we try to make it a little better and more comfortable.

I was born early at 29 weeks and suffered from brain bleeds at birth. This caused me to develop a condition called Hydrocephalus, which is also known as water on the brain. Hydrocephalus affects everyone differently. It mainly causes headaches, but the headaches are caused by pressure in the brain, which, if not corrected can lead to brain damage.

Because of this diagnosis, I’ve had to undergo over 70, yes 7-0 brain surgeries (all at Children’s) to attempt to fix or at least help the complications from the condition. There’s currently no known cause for Hydrocephalus, but the primary treatment is the placement of a shunt. A shunt is basically tubing that is placed in the brain, which drains the fluid from the brain to the stomach area, which relieves pressure and makes the headaches less painful. With Hydrocephalus, you’re basically looking for a happy medium of pressure (not too high or too low) all the time. With more than 70 surgeries in just over 17 years, that amounts to a lot of time in the hospital.

As a veteran patient and a member of YAC, my job is to try to help kids who are or have been in the hospital. By writing this blog post, I hope to help with something other than just “getting better” or “enjoying your stay.” I want to address something that is very important and also very difficult: Keeping up with school when you’re absent because of health issues. Whether that’s because you’re an inpatient or just don’t feel good enough to be at school, staying caught up can be so hard. I’m a junior in high school, so I’ll mainly address high school students. But my advice applies to those in elementary and middle school.

Be proactive: If you know you won’t be in school, talk to your teachers ahead of time. ALWAYS keep teachers updated, even if it’s just a quick email about little stuff. They’ll be much more willing to work with you if they’re kept in the loop. Let them know what’s going on, why you can’t be in school, and when you think you’ll be returning to school. Share as much as you’re comfortable with.

Plan ahead – if you can: Depending on how serious your medical situation may be, you may not be able to do homework while in the hospital. If you know that’s the case, make sure to plan for that and make a plan for when you will do the work. Having your teacher help you create a plan may also be helpful – for both of you.

Talk to your classmates: If you know friends are in your classes, they can gather homework for you and even tutor you if needed. That way, when you return you kind of know what’s going on.  This is how I’ve survived 11 years of schooling and 17 years of hospital stays.  Everyone’s situations are different, so do what works for you.

Prioritize the work: It totally depends on the situation on whether you can complete homework in the hospital. It depends on how you feel, how hard the curriculum is, how much medication you’re on and how busy you are with treatment while there. When hospitalized I try to prioritize when I feel at least somewhat decent. If there’s homework that I find easier or won’t take long to complete, I try to get that done during my stay (and sometimes even get help from my nurses)! But if there’s homework I need help on, or don’t feel up to doing, I try to schedule a way to do it (and get help on it) once I’m discharged.

Communicate early:  If you’re unexpectedly hospitalized (which has happened to me plenty of times), it can be really frustrating and stressful, just from a medical standpoint plus you have school to worry about, too. At the beginning of each semester or when I get new teachers, I make sure I have their contact information. That way if and when I need it, I have it. If I’m not expecting to be admitted but am, the first thing I do (once I feel good enough) is email my teachers. Most teachers are very willing to help you out. Once your teachers know, you can figure out a plan together and everything will be just fine. Education is very important, obviously, but I’ve learned that the main thing is to always focus on getting better before anything else.

Start early:  If you have a chronic condition and think you might be hospitalized often, my biggest piece of advice would be to figure out a system while you’re young. Especially before high school if you can, as classes get harder, so does staying up with everything.

Good luck with everything, whether it’s educationally, medically or otherwise, and remember you can do anything you put your mind to. Don’t let anything (like being in the hospital) stop you.

Double trouble: Twins suffer concussions 24 hours apart

Karen Schlossmacher Smith, an RN, was working on the critical care floor at Children’s Hospitals and Clinics of Minnesota when she got a phone call. Her daughter, Adrianna, was in the Emergency Department with a concussion. She had gone in for a lay-up at a basketball tournament when she fell to the ground and a fellow player stepped on her head.

It was 13-year-old Adrianna’s second concussion. She was treated and scheduled for a visit at Children’s Concussion Clinic for follow-up care.

Twenty-four hours later, Schlossmacher Smith got another call while at work. This time, it was for her daughter Michelle, Adrianna’s twin. Michelle had suffered a concussion during the same weekend basketball tournament. She took a block, hit her head and momentarily blacked out.

“It wasn’t even funny. I think I was in a little bit of shock and disbelief after the second call came,” she said.

Adrianna and Michelle

Twin girls. Two concussions. One day apart. Unlikely? One might think so. But, this wasn’t their first experience with back-to-back injuries. They once broke their hands 18 hours apart and ended up with casts on opposite hands, Schlossmacher Smith said.

A concussion is a type of brain injury that changes the way the brain normally works, according to the Centers for Disease Control and Prevention. It can be the result of a bump, blow, jolt to the head, or from a blow to the body that causes the head and brain to move rapidly back and forth.

Concussions can have a more serious effect on a young, developing brain and need to be addressed correctly and quickly.

“It takes a child or teenager three to four times longer to recover than an adult due to the rapid brain growth and development,” said Mary Dentz, a nurse practitioner who helped treat Adrianna and Michelle. “If the brain is not given sufficient time to heal from the injury before a child returns to regular activities, the recovery time becomes even more prolonged. Children and teens also experience more severe symptoms and neurological disturbances compared to adults.”

Symptoms from a concussion include having headaches, being sensitive to light and noise, feeling dazed, and being forgetful – to name a few. Adrianna experienced difficulties with vision and balance; Michelle had sensitivity to light and sound, Schlossmacher Smith said.

At Children’s newly launched Concussion Clinic, where Adrianna and Michelle were treated, patients receive a medical evaluation as soon as possible after the injury, which is usually within a week. The clinic, which has a multidisciplinary team, offers physical therapy, audiology, pediatric neurology, neuropsychology, advanced imaging capabilities and an active research program.

Between their Emergency Department visits and continued care, Adrianna and Michelle were seen a total of 15 times between them at Children’s, Schlossmacher Smith said. Physical therapy played a significant role in their recovery.

Children’s physical therapists see every concussion patient as early as 10 days post injury to help the patient return to sports safely, said Elaine Walin, a physical therapist who worked with the twins. An occupational therapist may see a patient if he or she has challenges more than a month after the injury. Therapy aids patients with their visual acuity, balance and tolerance to exertion, Walin said.

Patients return to school and regular activity only when they get an all-clear from a trained health provider. In Minnesota, young athletes who show signs of a concussion must be sidelined until they get a medical all-clear.

That law is important, Dentz said.  “Doing too much too quickly after a concussion can make the concussion symptoms worse and prolong recovery time,” she said.

Contact activities place a child or teen with active concussion symptoms at risk for a second concussion, she said. Having a second concussion before fully recovering from the first one is dangerous and can result in prolonged recovery time, lifelong problems with thinking, memory, processing or balance, and, while rare, death from second-impact syndrome (SIS).

Sports and recreation-related activities account for a majority of concussions. At Children’s clinic, 43 percent of the patients seen suffered concussions while playing hockey.

Sports play a big role in Adrianna and Michelle’s lives. With Adrianna so young and having already suffered two concussions, Smith worries about what will happen if she receives a third concussion.

“I think we will need to call it quits for contact sports,” Schlossmacher Smith said.

There’s not a lot of data on outcomes for children and teens after multiple concussions, but this is currently being studied, Dentz said.  Prolonged recovery time and more severe symptoms occur with each subsequent concussion, but the long-term effects aren’t clear yet.

Adrianna and Michelle continued going to school, but they took a break from physical education classes, music and testing, Schlossmacher Smith said. They took naps in the nurse’s office during gym and music classes, which was what allowed them to continue going to school. At home, screen time, such as watching TV and texting friends, was limited.

“The goal is to allow the brains to rest,” Schlossmacher Smith said. “They look fine on the outside, but definitely felt the effects in different ways.”

Adrianna and Michelle, who are also varsity divers and swimmers, only returned to play in their final state basketball game this past weekend.

The family appreciates the care they received from Dentz and Walin, who kept the girls positive and accountable for their own recovery, Schlossmacher Smith said. The girls’ Roseville coaches, teammates and other families supported them, knowing the importance of a slow recovery even when it impacted the team and resulted in having to pull out of games.

“They understand the long-term consequences,” Schlossmacher Smith said.

Yesica’s story: Living with diabetes


When Yesica started having to go to the bathroom frequently and was always drinking water, her family didn’t think anything was wrong.

Then, Yesica’s jeans stopped fitting.

“When I tried on some jeans, they fell right off,” said Yesica. “That’s something that’s not normal for my age. I should be gaining [weight], not losing.”

That’s when her mom took her to a doctor, and Yesica was ultimately referred to Children’s Hospitals and Clinics of Minnesota. Her symptoms were early signs of Type 1 Diabetes — a chronic disease in which there are high levels of sugar in the blood. While it’s often diagnosed in young children, it can be found at any life stage. One in 400 people under 20 years of age has diabetes, according to the American Diabetes Association.

“I had many questions. I was kind of nervous because I didn’t know what was going on and what I was supposed to do,” Yesica said. “It was a tough experience.”

The diagnosis has changed her life, and, most noticeably, her daily routine.

She injects insulin, which helps keep her blood sugar at a normal level, six times a day every day, said 11-year-old Yesica. She leaves class twice a day to see the school nurse and have her blood sugar checked. On days she’s not feeling well, she sees the nurse more often.

“It’s hard,” she said.

“Diabetes needs constant attention,” said Dr. Angela Tridgell, an endocrinologist at Children’s McNeely Pediatric Diabetes Center. “It’s something you can never take a vacation from.”

Those with Type 1 Diabetes often have to check blood sugar levels four to six times a day and take insulin four to six times a day, Tridgell said.

Children’s takes an aggressive and comprehensive approach to treating its patients, she said. They come in for at least four visits annually. The visit involves seeing a physician or nurse practitioner for a physical exam and analyzing blood sugar results to determine whether a change in insulin dosage is needed. A patient may also meet with a diabetes nurse educator, dietitian, psychologist or social worker – depending on needs.

“Our goal is to help a child be as normal as possible and be as healthy as possible,” Tridgell said.

Though the experience has been challenging for Yesica, she said she has found support by joining Children’s Youth Advisory Council where she can connect with other patients.

“I’ve learned that I should appreciate life and that I should stay strong no matter what,” Yesica said.

Where the heart is

Mindy, several months pregnant with her second child, wore a used, silver bangle bracelet a stranger had given her: “With God all things are possible – Matthew 19:26.” Even though she instinctively knew something was terribly wrong with her pregnancy, she was sure her unborn child would be okay. She would have bet her life on it, she said.

She would soon learn that she was right – about everything. Something was wrong. Charlie had a complex congenital heart defect. Specifically, he had transposition of the great arteries. Dr. Amarjit Singh, a now retired pediatric cardiologist at The Children’s Heart Clinic at Children’s Hospitals and Clinics of Minnesota, diagnosed Charlie after a series of ultrasounds and wrong answers from other doctors. Mindy was right about something else, too. In the end, everything would turn out okay with her son.

Baby Charlie, hospitalized at Children's, with mom, Mindy, looking on

Charlie was born in 2005 at Abbott Northwestern Hospital. Immediately after entering this world, he was rushed through a quarter-mile underground tunnel to Children’s. His oxygen levels were dangerously low. Once at Children’s he immediately had an emergency surgical procedure known as a septostomy. A septostomy creates a hole between the heart’s chambers and allows for oxygen rich blood to mix within the heart, thus allowing oxygen to reach the body.

Following the septostomy, it was discovered that Charlie had a stroke. It’s unclear when it occurred – either during resuscitation following his birth, or during the septostomy, Mindy said. In the following days, he worked to recover from the traumatic events on the day of his birth. Eventually he became stable enough to undergo a complex lifesaving open-heart surgery.

Mindy has recorded this story for a book, “Embracing Charlie.” It’s a story about love, strength and faith. The love she and her husband shared as they built a family. The strength they showed when they learned their son had a heart defect. But mostly, the story is about Mindy’s faith despite the challenges she faced.

She is honest, giving outsiders a peek into her world as she and her husband, Paul, searched for answers and, when they got them, how they prepared for a son with a heart defect.

Mindy, who spent three years off and on writing, said she was inspired by a connection she made with a Boston family whose son also had transposition of the great arteries. As she prepared for Charlie’s birth, the family sent Mindy a photo of the boy. That photo gave her more reassurance than any doctor could, she said.

“When I first started thinking about writing, I wanted to be that to somebody else,” she said. “[The photo] gave me a sense of hope, to see what our life could still look like.”

Paul, Mindy, Charlie and Sophie

After several weeks in the hospital recovering from open-heart surgery, Charlie went home. Developmental milestones were delayed. He received speech, occupational, and physical therapies to address his challenges from the stroke and made great progress, Mindy said. For a long time, he favored his right side. Today, he’s right-hand dominant, and you would be hard pressed to notice that anything had ever happened to him.

He continues to have follow-up visits with a neurologist. He also goes to the Heart Clinic for regular check-ups. Future surgeries are possible. “He may need something, but in the scheme of heart surgeries, he’s been through the worst of it,” she said.

Mindy has “absurd gratitude” for her son’s care team, which included surgeons Dr. Francis Moga and Dr. David Overman. And she’s grateful for Dr. Singh for his incredible commitment to his patients and for giving her answers when others couldn’t.

“As a pediatric cardiologist, one of the joys of our job is that we get to see the babies with very complex health issues grow up into wonderful young people who still love us in spite of the pain and discomfort that we may have put them through,” said Dr. Singh. “The other is that we meet some incredible families. Charlie and his parents are one such family. I was very fortunate to care for Charlie and to know his parents. They are extraordinary people. It was my privilege to see him grow up to be happy loving child.”

Dr. Singh and Charlie

Charlie, 7, is delightful, Mindy said. He is an extrovert in an “oddly mature way.” He’s obsessed with artists Claude Monet and Vincent van Gogh.

“It’s like there’s an old man trapped in there,” she said.

Mindy often thinks back on the day she received the bracelet from a stranger and the faith that came with it. That day, she had prayed for a sign that everything would be okay.

She was working at a dental clinic when a colleague approached her with the bracelet. A patient had given it to Mindy’s colleague after she asked where she had gotten it because she wanted to get something similar for Mindy. The patient removed the bracelet and urged the colleague to give it to Mindy.

“I asked Jesus to show himself to me, and he responded, with jewelry,” she said.

She no longer wears the bracelet. She gave it to another mother of a newborn cardiac patient while Charlie was at Children’s.


The experience of her son’s heart defect has taught Mindy to “embrace the darkness and troubles.” There’s growth in that, she said.

“It changed our lives for better. I couldn’t have seen that at the beginning,” Mindy said. “It gave the gift of perspective.”

To read the first chapter of Mindy’s book, check out her blog.

A heart mom is born

By Elin Neugebauer

Elin and Maija

Maija Jean was born on July 2, 2009, after an induction at 40 weeks and 3 days. She weighed 8 pounds, 4 ounces and scored an eight and nine on the Apgar test. It felt like a textbook pregnancy, labor, and delivery with a little Pitocin thrown in. After Maija’s birth I was filled with immense joy and love. Maija made me a mom. From that point forward, I would be a protector, a teacher and a friend.

A nurse took her measurements, weighed her and stamped her feet. I hear a murmur. Usually it is nothing. Don’t worry.

Our first night went smoothly. Bright and early the next morning, her pediatrician checked on her. I hear a murmur. Usually it is nothing, don’t worry. I’m going to schedule a heart ECHO just to make sure.

When the pediatric cardiologist came knocking on the door, I became concerned. This was no longer a textbook birth. I hear a murmur. Usually it is nothing, don’t worry. I am going to have your daughter admitted to the Neonatal Intensive Care Unit (NICU) just to be sure. We’ll run another ECHO in the morning.

After the cardiologist left, I was discharged and my daughter was taken to the NICU. My saving grace was the graciousness the staff blessed upon me by letting me stay one more night as an “invisible patient.” The next morning after the ECHO we were sent home, together. Her discharge included strict instructions to come into the cardiologist’s office first thing in the morning for another ECHO. But I didn’t worry at the time. These things were usually nothing.

I could never have imagined experiencing the kind of emotional pain I felt just four days after giving birth. Numb from the waist down, bursting with love from the waist up. I had just given birth to my daughter. It was the most beautiful and intense moment of my life. I held her close and whispered my love and admiration for her. What I did not know upon the doctor placing her in my arms was that I also became a heart mom.

The murmur was pulmonary valve stenosis. Her lungs weren’t getting enough blood, and she needed surgery. That is when my whole world shifted.

Before Maija’s birth I had no idea she had a Congenital Heart Defect (CHD). Ultrasounds didn’t detect pulmonary valve stenosis, atrial septal defect or right ventricular hypertrophy.

I had skipped the chapters in pregnancy and baby books that covered any type of special need. After her diagnosis, my life changed. I became a stay-at-home mom armed with anti-bacterial lotion, wipes and sprays. Maija sat in a plush cart cover at the store. The job as protector took on a much greater meaning than I was expecting. I quickly became one of those helicopter moms.


Now, three-and-a-half years later, I am a proud heart mom. And the leash is a little bit looser. Maija is in preschool while I work outside the home, and she enjoys ballet classes throughout the week. We no longer use a cart cover.

Though her surgery at 5 days old to fix the restricted valve was a success, she now has significant pulmonary valve regurgitation. The flow of blood through her valve leaks back into her heart. A similar flow takes place in the hole between her atria. The right ventricular hypertrophy is still a concern. She will need surgery again someday, and even though I will hopefully know in advance, I’m still scared. The idea of your baby, no matter their age, going under anesthesia and having heart surgery is terrifying.

Congenital heart defects affect tens of thousands of babies every year. They are the most common birth defect. As a heart mom, I have a responsibility to share my story – my daughter’s story – with others. She participates in fundraising and awareness events with me, and I am endlessly reading and sharing news with my family and friends. As we enter Congenital Heart Defect Awareness Week, I encourage others to share their stories as well. We can all help our heart babies, young and old, together.

On July 7, 2009, I handed over my baby to the surgeons. It was the single most terrifying moment I have experienced. Her life, and my heart, were in their hands.  We now celebrate our Heart Day every year on July 7. We celebrate her life and her heart. A beautiful beating heart with a special extra whoosh to it.

Maija, 3, takes ballet lessons



Elin Neugebauer is a heart mom to 3-year-old Maija Jean. Elin works at Children’s Hospitals and Clinics of Minnesota as a Health Unit Coordinator and is actively engaged with the community on Twitter. Follow her here