Category Archives: Patient stories

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. Thursday, 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, 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.

By 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.

I 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.

Austin’s story: A pioneering surgery provides hope

For 3-year-old Austin Graue, his short life has been anything but typical.

At birth, he was delivered via emergency C-section after doctors determined he wouldn’t be able to breathe on his own. He was rushed from the hospital in his family’s hometown of Northfield, Minnesota, to Children’s – St. Paul.

Austin Graue, of Northfield, Minnesota, was born in August 2010.

“It was disbelief and shock,” said Mary Graue, Austin’s mother, when she thinks back to her baby’s first days. “What we thought was happening [having a healthy baby boy] was exactly the opposite. We asked ourselves: ‘Is he even going to survive?’ ”

Confusion and doubt swirled.

After discharge and a precious few days at home, Austin was readmitted to Children’s when he continued to experience breathing problems and near-constant vomiting prevented him from gaining weight. Diagnosed with pyloric stenosis (a narrowing of the pylorus, the opening from the stomach into the small intestine), Austin would require surgery.

Surgery was a success and Austin was discharged, albeit with a tracheostomy (a hole made in his neck that went through to his windpipe) to help him breathe (“His nasal passages were the size of pencil tips,” Mary said) as well as a gastronomy tube for feeding. His only visits to Children’s now would be for quarterly checkups. However, things quickly changed during his three-month visit when doctors told the Graues that the “soft spots” on Austin’s head were closing too quickly and he would need surgery, again.

A new diagnosis: Austin had Pfeiffer syndrome.

“Austin had experienced challenges since birth and now we finally had the answer why,” Mary said. “It was such a relief to finally have an answer.”

Hope for Austin’s future was growing.

Pfeiffer syndrome is a rare genetic disorder which only affects about 1 in every 100,000 people. Because of his condition, the bones of Austin’s skull had prematurely fused together, putting increased pressure on his brain. If left untreated, Austin’s brain would not be able to fully develop, causing a host of developmental problems. Physically, Austin would begin to develop bulging and wide-set eyes, a high forehead and an underdeveloped jaw.

At just 1 year old, Austin and his family met Robert Tibesar, MD, one of the craniofacial surgeons at Children’s ENT and Facial Plastic Surgery, the first and only ENT and facial plastic surgery practice in Minnesota that cares exclusively for kids.

“Austin had fusion of many of his sutures – or joints – in his skull,” Tibesar said. “That meant that his mid-face, forehead and the back of his head were not growing properly. The fused sutures had constricted growth and were causing Austin to have an abnormally shaped head, as well as put him at an elevated risk of pressure inside his skull.”

First, Tibesar, along with Joseph Petronio, MD, Children’s neurosurgery medical director, performed surgery to advance the front part of Austin’s head and eyebrows, allowing him to better close his eyes and improve the contour of his forehead.

Pfeiffer syndrome is a rare genetic disorder which only affects about 1 in every 100,000 people.

“As expected in children with Pfeiffer syndrome, the problems with Austin’s skull could not be solved with just one operation,” Tibesar said. “The fused sutures in the back of his head continued to constrict the growth of his skull.”

“The back of Austin’s head was flat,” Tibesar continued, “and that was preventing his brain from fully developing. The back part of the brain serves important functions for vision and balance, and we needed that to be decompressed to allow his brain to grow normally.”

Tibesar would use his knowledge of the jaw distraction procedure – a procedure pioneered at Children’s – to perform a “cranial vault expansion” on Austin, which would be coupled, for the first time, with image-guidance technology.

“In looking at the literature, there are no other case reports of this exact procedure for this exact problem,” Tibesar said.

As Austin’s dad, Phil, described it, Tibesar and his team were going to “move an island of bone” on Austin’s head.

Tibesar likened image guidance to using a GPS in favor of a paper map. “When you’re trying to get somewhere using a map, you may not know exactly where you are; sometimes you have to make your best guess. With GPS, you know exactly where you are at all times. The same is true with image guidance. During surgery, we know exactly where we need to make each bone cut.

“For Austin, and for many other kids to come, this represents a significant advance in terms of precision, and, therefore, safety for these types of surgeries.”

Austin would become a pioneer.

In the operating room, Tibesar and his colleagues opened Austin’s skull and attached four “distractors” over his head from ear to ear – these distractors would allow Austin’s skull to expand and grow. At the completion of the surgery, four small key holes protruded from Austin’s head, and his parents were entrusted to turn a special key twice a day to slowly expand his skull, causing little to no pain for Austin.

Doctors opened Austin’s skull and attached four “distractors” over his head to allow his skull to expand and grow.

“It was really hard at first,” Phil said. “You are literally moving his skull… I couldn’t believe I was doing it.”

After 30 days back home, Austin’s skull had expanded nearly 3 centimeters and was starting to grow properly on its own.

In February 2013, Tibesar and his colleagues removed the distractors in order to allow the bones of Austin’s skull to fill in more completely. Since the surgery, Austin has experienced few complications and has only been back to Children’s for routine check-ups.

Before (right) and after (left) X-rays of Austin's skull

According to Tibesar, the next-closest place that offers surgery for kids with Pfeiffer syndrome is in Chicago. Thankfully for Austin and his family, he would be able to be treated less than an hour from home.

“Things have been normal,” Mary said. “We have our daily worries, but otherwise Austin is going to school, talking more and making friends. As time goes on, we are getting more normal around here.”

Austin Graue with his mother, Mary

For other parents that will face a similar journey, Mary encourages them to “take things one day at a time.”

Austin will have to undergo another surgery in a few years to ensure that the bones of his face grow along with the rest of his skull, but he’s well on his way to a much more typical life.

“We need parents who put their trust in us,” Tibesar said. “It’s a big honor to have that trust, but really, [the children] become the pioneers and we are able to apply this technology to the benefit of others.”

More about Austin Graue’s story is available here.

Surgery before birth saves lives of preemie twins

Amina (left) and Rania Abdi were born Feb. 11, 2014, at 25 weeks. The twin sisters were diagnosed with twin-to-twin transfusion syndrome while in the womb. (Jimmy Bellamy / Children's Hospitals and Clinics of Minnesota)

We continue our focus on fetal care this month by honoring Siman Abdi and her twin daughters, Amina and Rania, who were born Feb. 11 at 25 weeks.

Earlier in Siman’s pregnancy, the sisters were diagnosed with twin-to-twin transfusion syndrome (TTTS), which is a rare condition that occurs when one twin donates blood to the other while in the womb and, if left untreated, potentially can be fatal for both babies.

Thanks to the work of the Midwest Fetal Care Center, a collaboration between Abbott Northwestern Hospital and Children’s, Siman’s daughters are recovering at Children’s and continue to grow stronger each day.

Learn more about twin-to-twin transfusion syndrome:

Twin-to-Twin Transfusion Syndrome from The Mother Baby Center on Vimeo.

Preemies to princesses: Thank you, Children’s

Rebecca (left) and Emily Pierce, 2 months old, receive care in Children's neonatal intensive care unit in this March 23, 2011, photo. (Photo courtesy of Debbie Gillquist)

Rebecca (left) and Emily Pierce, dressed as princesses, are 3 years old and live in Rapid City, S.D. They visit Minnesota often to see family and for followup appointments at Children's. (Photo courtesy of Debbie Gillquist)

By Debbie Gillquist

Hardly a day passes that we aren’t grateful for Children’s Hospitals and Clinics of Minnesota’s quality work, care, compassion and expertise. My twin granddaughters, Emily Rose and Rebecca Elizabeth, were born Jan. 28, 2011, at 1 pound, 4 ounces and 1 pound, 10 ounces, respectively, at Abbott Northwestern Hospital and transferred to Children’s. Fittingly, Dr. Ronald Hoekstra, who was present for the twins’ mother’s (my daughter, who weighed 1 pound, 8 ounces) birth at the same hospital 33 years ago, led the team.

First of all, wow, have things changed in 33 years! What hasn’t changed, though, is how incredibly passionate all the providers at Children’s are, how much they care for the family and how much they make the experience “home away from home.” (We even met up with some of the nurses from all those years ago.)

We were so impressed with every aspect of our stay and wish we could personally thank every one of the staff members who cared for my family. Children’s cares, makes a difference and saves lives. Thank you from an incredibly grateful family.

Miracles – you create miracles.

5 pounds, 10 ounces and 1 year of miracles

Connor Lee Miller had a neonatal arterial thrombosis, commonly known as a blood clot, in his left arm. (Photo courtesy of the Miller family)

By Becky Miller

The birth of a child is, arguably, one of the most exciting moments of any parent’s life. In our case, our son’s arrival definitely was exciting, but it was terrifying, too. On April 10, 2013, at 35 weeks’ gestation, we welcomed our son, Connor Lee, into the world. He weighed 5 pounds, 10 ounces and measured 19½ inches in length. He also happened to have an additional, unique characteristic that doctors couldn’t diagnose initially – a dark purple and extremely swollen left arm. Connor quickly was introduced to me and then whisked away by a team of doctors with Dad following closely behind.

After what seemed like an eternity, the three of us finally were reunited. Connor was peacefully sleeping in his room in Children’s neonatal intensive care unit (NICU). A feeding tube had been placed, and he was hooked up to IV medications – scary, but a normal, familiar sight to any parent that has had an infant in the NICU. Not so familiar, however, was Connor’s arm. The swelling had increased, and it had begun to change colors, with parts of it beginning to appear black. Doctors were able to determine that Connor had a neonatal arterial thrombosis – more commonly known as a blood clot – that had developed in an artery in his upper-left arm. Doctors said they were unsure of when it formed, but based on the damage to Connor’s arm, they hypothesized that it had been in place for anywhere from four to eight weeks prior to birth. Connor was unable to move his wrist or hand, and doctors couldn’t find a pulse below his elbow.

Connor smiles during Christmastime. (Photo courtesy of the Miller family)

The first 48 hours of Connor’s hospitalization were filled with more questions than answers. Words and phrases that terrified us became part of normal, everyday discussions: amputation, disability and skin grafting, just to name a few. We became familiar with a phrase that we quickly learned to hate: “Wait and see what will happen.” Connor’s medical team told us that his was a case unlike anything they had seen in the NICU before and they were not willing to make any drastic decisions too quickly. Connor’s unique and complex situation crossed many specialties. We like to say that his NICU room needed a revolving door – when one doctor or specialist walked out, another (or two or three) walked in. In the first weeks of his life, he was seen by hematologists, a plastic surgeon, orthopedic surgeons, a neurosurgeon, the skin integrity team, pain and palliative care, speech therapists, occupational therapists, radiologists and, of course, the neonatology team.

Finally, around day 20, Connor began showing signs of improvement. His arm slowly began to heal and his clot started to shrink. We will never forget the first time we heard the neonatologist utter the word “home” during rounds. Based on the complexity of Connor’s case, our social worker helped arrange a care conference that allowed the various medical professionals following his case to weigh in on how we could best move forward. Connor had improved to a point that he no longer needed NICU care, but he continued to need daily wound care. With the help, support and incredible selflessness of some of the integral members of Connor’s care team, we put our heads and hearts together and devised a discharge plan that would allow Connor to come home. We collaborated, shared concerns and ultimately came up with a plan that ensured Connor’s and our family’s needs could be met. On May 3, 23 days after birth, Connor was allowed to come home!

Connor (left) is seen with his family. (Photo courtesy of the Miller family)

Since leaving Children’s, Connor has exceeded the expectations of his care team. Having been a baby boy that once faced the threat of becoming an amputee, Connor has come farther than we thought possible. He has learned to crawl. He can pull himself up and move along furniture. And, most noteworthy, Connor occasionally is using his left hand to pick up objects of varying sizes. With each of these achievements, we constantly are reminded of how much Connor’s care team did for him. We are incredibly grateful for the amazing love, care, compassion and honesty that the staff at Children’s showed to Connor and our family during a completely terrifying experience. Today, as we celebrate his first birthday, we can, without a doubt, say that Connor would not be where he is today without the amazing team at Children’s!

Henry’s story: More than a little bump on the head

Bruce and Amy Friedman appear with seven of their nine children, including 2-year-old Henry, in the family's 2013 Christmas card. (Photos courtesy of Bruce and Amy Friedman)

By Bruce and Amy Friedman

We took six of our nine children from our home in Omaha, Neb., to Minneapolis on Dec. 20 to visit their eldest brother, Ricky, who had taken a position in Minnesota. We were excited to see Ricky, do some last-minute Christmas shopping at the Mall of America and spend some good family time together.

After a long day at the mall, which included a visit with Santa Claus, we decided to head back to the hotel before meeting Ricky for dinner.

Our 2-year-old son, Henry, fell asleep in his car seat almost immediately en route to the hotel. We decided to wake him and take him to the pool, as he adores the water, pools, spas and baths.

Henry Friedman, 2, followed Santa Claus at the Mall of America in Bloomington, Minn.

Henry was excited to be at the pool with his brothers and sisters. He had been sitting on his daddy’s lap for a few minutes in the hot tub but clearly wanted to return to the pool where his brothers were playing. 

Bruce lifted Henry out of the spa, and, as he was getting out behind Henry, we watched Henry take two steps on the hard, slippery floor and his legs went out from under him, like someone had yanked a rug out from under his feet. It all happened as if in slow motion.

Boom. Boom. Boom.

Bottom. Shoulder. Head.

We were at his side in an instant. Henry never lost consciousness but was angry and scared. He cried. Bruce picked him up, consoled him and inspected every inch of his body — no marks, bumps, scratches or bruising.

Since he missed most of his afternoon nap, we decided to take him up to the room and let him rest before dinner. About 45 minutes later, we woke him up. He was cranky, but he walked, talked, ate and acted relatively normal, but he was agitated and tired.  Reluctantly, we decided to let him nap again rather than go out to eat.

About 20 minutes into his second nap, Henry broke out in a cold sweat. Bruce decided to rouse him but was unable to get him completely aware. He tried running a bath to see if that would wake him; we saw no reaction.

A light bulb went off. We realized that something major could be wrong. Bruce placed Henry on the bed and pulled his eyelid up. Henry’s right pupil was dilated. Bruce grabbed his cellphone and turned on a flashlight to see if Henry’s eye would react to the light.

Nothing.

Amy had left to pick up pizzas, so our daughter called her to tell her that something was wrong with Henry and that we needed to get to the hospital immediately. She was back in the entryway waiting when we raced Henry downstairs. Amy held him in the backseat of the car while Bruce jumped into the driver’s seat and set the GPS for the Minneapolis campus of Children’s Hospitals and Clinics of Minnesota, about 10 miles from the hotel. 

Henry is intubated in the pediatric intensive care unit (PICU) at Children's — Minneapolis in this December 2013 photo.

Along the way, Amy kept a close eye on Henry. He wasn’t fully conscious but was breathing.

Halfway to the hospital, Henry started to posture; his legs became stiff and rigid. When we arrived at what we thought was Children’s, we followed the signs to the Emergency Department, but unknowingly ended up in the ED of Abbott Northwestern Hospital on the same block.

We were whisked into a room and several people worked to stabilize Henry and assess his condition. Almost immediately, the ED physician said that he needed to go to Children’s and that an ambulance would take us there. They notified Children’s to assemble their trauma team.

Once at the Children’s ED, we met the neurosurgeon, Walter Galicich, MD, almost immediately. He told us that a CT scan and surgery were absolutely required to save Henry’s life.

Things moved fast from there. We followed Henry and the team from the ED to the CT scanner and then to the surgical area. The doors closed, and we were left in the waiting area; it was out of our hands. It was amazing that only minutes earlier we were just arriving in the ED.

After surgery, Dr. Galicich was guarded with his prognosis, simply saying we have to see how Henry comes out of it the next morning. What was clear was that Dr. Galicich and the quick work of the whole team at Children’s had saved our child’s life. We knew at this point that Henry would survive the injury, but we wondered if he would wake up, recognize Mommy and Daddy, speak, laugh, or even be able to walk. 

Henry smiles at his father, Bruce, while recovering at Children's — Minneapolis.

The next morning, in the pediatric intensive care unit (PICU), Henry was taken off of the medication that kept him sedated overnight and extubated. We were ecstatic when he cried and moved his extremities. That excitement gave way to more wondering. Could he see us? Would he recognize us? Would he sit up, walk and talk again? Day after day, Henry began picking up those basic life functions that the injury temporarily had taken from him.

Henry spent nine days recovering at Children’s. And each step brought excitement — then wonder — as to what he’d do next. All along the way we had wonderful nurses, doctors and staff share our joy, strive to make Henry comfortable.

Members of the various teams — including the trauma and neurological teams — answered our many questions day after day. They were patient with us and loving and caring with Henry. It wasn’t an easy job, either — dealing with parents who had almost lost their 2-year-old, and Henry, who was angry, hurting and scared.

Soon, Henry began to sit up on his own in a wagon, lift his sippy cup to his mouth and was saying “Mommy” and “Daddy.” We were able to transfer him ourselves to a pediatric rehabilitation hospital in Lincoln, Neb., on Dec. 30.

Henry spent 23 days there, but he’s home now and continuing to make progress. We are hopeful he will make a full recovery.

A CT scan shows nearly one-third of Henry's skull filled with blood, causing severe pressure on his brain.

The day before we left Children’s, Dr. Galicich came by to see Henry. He was happy to see how well Henry was doing and amazed at the recovery he had made. At that time, he told us how serious the injury was — when Henry fell and hit his head, it caused an epidural hematoma, a brain bleed. Nearly a third of his skull had filled with blood, causing severe pressure on his brain. It’s quite unlikely that an adult would have survived the injury, and we probably were mere minutes away from losing Henry.

In addition to the wonderful care they gave Henry, the staff at Children’s took the time to assure us that there were presents in his room on Christmas morning, and that we, his parents, had a place to stay in the hospital or nearby. They reminded us to take care of ourselves (get enough sleep and enough to eat) so that we were able to take care of Henry.

Our family is tremendously indebted to the doctors, nurses and all of the staff members at Children’s. Thank God that this facility was close, that a neurosurgeon was in the hospital when we arrived and that everyone there knew how to provide our child with the best possible care.

———

What to do in the event of a traumatic brain injury

According to Meysam Kebriaei, MD, a pediatric neurosurgeon at Children’s, if your child experiences any kind of head trauma, keep an eye out for the following signs and symptoms: 

  • Loss of consciousness
  • Progressive and worsening headache
  • Lethargy or fatigue
  • Vomiting
  • Increased irritability
  • Post-traumatic seizures
  • Post-traumatic memory loss
  • Unequal pupils
  • Weakness on one side of the face or body

Should you notice any of them, it’s best to bring your child in for an evaluation by a medical professional.

Gavin’s story: An update by Nicole Pierson


By: Nicole Pierson

As we approach Gavin’s 17th surgery, we do so with sadness, hope, determination and caution

Gavin Pierson is a 7-year-old patient at Children’s Hospitals and Clinics of Minnesota. His journey began on April 7, 2012 after an unexpected brain tumor diagnosis. Gavin is a tough, brave boy with hopes and dreams. These dreams start with one day winning the battle against his brain tumor, who he has named Joe Bully.

Gavin’s journey has been filled with countless ups and downs. Last year, we hit an “up” when Gavin was granted compassionate use of a drug called Palbociclib, which is made by Pfizer. He’s the only child in the U.S. using the medicine, and it has stopped the progress of his fast-growing, benign tumor.

Then in October, Gavin was the first patient in the Upper Midwest to undergo a laser ablation surgery at Children’s for his brain tumor. He’s the only person in the country to have a mature teratoma successfully ablated with this laser technology.

After the procedure, Gavin did well and quickly bounced back. He was on the mend and doing well until Nov. 20, when we brought him into the ER. Gavin had complained of tingly feelings in his arm and leg along with sudden speech problems. The right side of his face was paralyzed, and he suddenly couldn’t speak coherently. Once in St. Paul, a CT scan showed no abnormalities, and Gavin was admitted overnight. The next morning, an MRI showed a serious and extensive blood clot in many veins in his head. The clot could have caused a stroke, bleeding, coma or death. He was put on blood thinners and remained hospitalized for almost two weeks.

Gavin was tested for a blood disorder that might be causing the clots, but nothing was found. The clot is not believed to be a result of the laser procedure, but instead has become a separate hurdle that has developed slowly over time. Given that this clot is the second Gavin’s had in two years, he will likely be on blood thinners for a long time.

After gaining strength, energy and improving his physical abilities, Gavin required steroid treatment to decrease the blood clot swelling. While the steroids are necessary, they have so many negative side effects, including weight gain, muscle weakness and mood change.

As we fast-forward to today, we’re thrilled to share that Gavin has improved significantly and is ready to continue his battle against Joe Bully with another laser ablation procedure. This amazing technology allows the surgeon to repeat treatments without a limit. Our hope is that this surgery will knock the bully down further than before. Of course, our hope is that it will eliminate the last of Gavin’s brain tumor, but there are no promises. Gavin’s medical team can’t guarantee this will be the last as Gavin is the first for so many things.

Although it would be nice to have a predictable disease, having options and hope is better than the alternative. A year ago, our hope was slipping away. Today, we have a medicine and a surgical technique that complement each other. And we are thankful for the amazing care Gavin has had and continues to receive at Children’s.

If you can believe it, Gavin is excited for surgery. He wants to win this epic battle against Joe Bully and he has an amazing army supporting him. He inspires everyone around him, and he has inspired us as his parents to fight harder even when it seemed we had no options left. He’s overcome obstacles that only superheroes could have toppled and he’s amazed his doctors and care team over and over again. Gavin’s inspiration drives all of us to continue fighting and never give up.

As we approach Gavin’s 17th surgery today, we do so with sadness, hope, determination and caution. Sadness because we never imagined this life for our son – who was perfectly healthy for almost six years; hope that this procedure will cure him and give hope to other families in the present and future; determination to beat Joe Bully; and caution because we have to tread carefully on this journey, making all the right moves and not losing sight of our goal.

This is our story. Thank you for being a part of it.

Living with congenital heart disease: One man’s “game plan”

Matt Ames is a 30-year-old from Minneapolis, Minn. He is a small business owner. He is a camp counselor. He is a self-proclaimed “freak athlete.” And, born with a congenital heart defect, Matt is also an adult being treated at a children’s hospital.

Matt was born with levo-Transposition of the great arteries. Today, several open heart surgeries and two pacemakers later, Matt is still a patient at Children’s Hospitals and Clinics of Minnesota – the largest pediatric cardiovascular program in the Upper Midwest and recognized by U.S. News & World Report as one of the best children’s hospitals in the nation for cardiovascular care – and continues to receive treatment at the same facility, by the same nationally-renowned medical team, as when he was born.

“It’s eye-opening what they can do now,” says Matt. “Not so long ago I would have been considered lucky to be alive. Yet today, more and more children are able to survive this condition and go on to lead healthy, full lives. Technology and newfound disciplines have come so far.”

Until only recently, infants born with congenital heart defects weren’t expected to live past their teens. About 1 in 100 kids are born with a heart defect, but thanks to the advances made in congenital cardiac surgery, many are growing into adulthood.

“In the last year alone we had upwards of 250 patients in the clinic, and many of them were just like Matt – adults that were treated as children for congenital heart defects. It’s great to see so many of them living healthy, active lives,” said Dr. Chris Carter, pediatric cardiologist, Children’s Heart Clinic.

“In addition to caring for thousands of pediatric heart patients each year, what makes Children’s special is that we have a dedicated team of doctors to work with adult patients. It’s an incredible, growing field, and our specialists are some of the best-equipped to treat and care for hearts of all ages and sizes. In fact, one of our oldest patient is in his 70’s!”

As founder and owner of MN Pro Paintball, Matt does not allow his heart to define him. A company he launched upon graduating from high school, he has since grown the business to include a 200-acre outdoor paintball park in Lakeville, retail stores in Burnsville and Minnetonka, as well as an online store. He was also named the 2012 Minnesota Young Entrepreneur of the Year by the U.S. Small Business Administration.

Matt also does not forget how fortunate he is. Upon receiving a pacemaker transplant in 2008, Matt decided he wanted to give back to Children’s. Thus, the Challenge for Children’s (C4C) Big Game was born. Since the first annual event more than five years ago, a charity paintball event that has grown from 200 players to more than 700, MN Pro Paintball has raised more than $140,000 for the cardiac unit at Children’s.

“Being born with a congenital heart defect is often a heartbreaking diagnosis for parents,” adds Matt. “And undoubtedly for the child, it can be a challenging road to travel. Fortunately for me, and for so many others like me, there are places like Children’s and excellent medical support systems to help us succeed along that road.”

Matt gives a first hand account of his journey and shares more about the Challenge for Children’s Big Game here

Hearts of thanks: A note to the epilepsy unit at Children’s – St. Paul

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

We choose Children’s for the mix of services we can utilize for our son with multiple health care needs. This week, I want to say thank you to the nurses in the Epilepsy Unit. Sam has been inpatient for several different rounds of testing and to start the Ketogenic diet. As we started the diet, there was a steep learning curve for us as Sam’s chefs.  Our nurse, Pat, took extra time to sit and answer questions, to share ideas about what other families had done, helped us prep the food, and then watched while we learned how to do it on our own. She made sure we were ready to handle the transition from full support in the hospital to independent management at home. It wasn’t a dramatic moment, but it was at a period of time when so much was changing for Sam in terms of medications, he was having frequent trouble with pneumonia, and his overall health status was deteriorating. I felt overwhelmed and adding in more new requirements to Sam’s care regimen was daunting. The support from the nurses, and Pat in particular, made that transition easier and empowered me to feel more confident about continuing to care for Sam at home. Thank you for caring when we needed your help and supporting us when we were learning something new.

I also want to say thank you to the many people who smiled at us, greeted us, asked if we needed help, or gave us directions along the way. Many of you were housekeeping staff, maintenance staff, or in other non-medical positions. I want you to know your kindness is appreciated in addition to the hard work you put into making sure the needs of patients and families are being met.

Thank you for your commitment to kids, for your kindness, and for sharing your time and expertise to care for my son.

–Stacey Jenkins

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.

Hearts of thanks: Maisy’s story

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

Dear PICU staff,

Imagine a young girl without a family by her side, when she was fighting for her life…facing one surgery after surgery another, alone. And then imagine a staff who took this little girl under their wing and gave her the compassionate and quality care she deserved. And then picture this same girl who is 6 years old now. Who, after 28 surgeries, a pacemaker placement and countless other procedures and hospital stays…imagine this same little girl filled with confidence, charisma and abounding enthusiasm and love to give. This is our daughter Maisy… who joined our family through adoption after living two years of her life without a forever family. Because of the love and quality care that Maisy received at the hospital, she is thriving, happy and ready to take on the world. I don’t believe that she would have a future as bright if she had not received such excellent and nurturing care. To you, we give you a heart of thanks!

– Julie Martindale

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.