Category Archives: Patient stories

Gavin vs. Joe Bully: First-of-its-kind laser surgery shrinks tumor by more than 40 percent

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

If you’ve been following 8-year-old Gavin Pierson’s story, you know he and his family have been through a lot. In 2012, Gavin was diagnosed with a mature teratoma brain tumor.

Since then, he has undergone numerous craniotomies and he and his family have dealt with big drug companies to fight his brain tumor, which Gavin refers to as “Joe Bully.” Unfortunately, Joe Bully is a particularly tough tumor, located in an area that is difficult to operate on and comprised of hard, “concrete-like” tissue. While Gavin’s prior treatments made progress, Joe Bully kept growing back.

give_gavin_blogBut it appears that Gavin’s neurosurgeon, Joseph Petronio, MD, may have found Joe Bully’s weak spot. Over the past eight months, Gavin has undergone two Visualase laser surgeries, an MRI-guided procedure designed to incinerate the tumor. He’s the first patient with a mature teratoma to ever use Visualase – and it may have stopped Joe Bully in its tracks.

Children’s and the family also successfully petitioned pharmaceutical company Pfizer to grant Gavin access to an experimental drug, palbociclib, to help control the tumor’s growth. Gavin is the youngest patient to use palbo.

We’re happy to announce that a recent MRI scan showed Gavin’s formerly peach-sized tumor has shrunk more than 40 percent. Even better? There are no signs of regrowth.

Gavin’s courage and strength inspire us every day. Thank you, Gavin, and congratulations.

Learn more about Gavin’s story and surgery:

The road to recovery: Pediatric cancer services

Each year, close to 12,500 children in the U.S. are diagnosed with cancer. Among them who live in the Upper Midwest, more than 70 percent are treated by Children’s Hospitals and Clinics of Minnesota. This week we shared Jenna Carnes’ cancer journey on Twin Cities Moms Blog. Jenna is one of many teens we see in Children’s Cancer and Blood Disorders Clinic each week, and just like every pediatric cancer patient, her journey is a unique one.

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

“Like all of our patients, we want Jenna to still be a kid and not to have to grow up too quickly because of the disease she’s dealing with,” said Dr. Joanna Perkins, Jenna’s treating physician in the Cancer and Blood Disorders Clinic at Children’s. “With the suite of treatment options we offer, Jenna’s been able to get back to being a normal teen.”

Beginning with the Child Life department, Jenna utilized many of Children’s support services to help her in her healing journey. From how to talk about cancer with her friends at school to going to surprise Minnesota Twins baseball games with her family, Jenna said her child life specialists made each day that she was at the hospital just a little easier. This was a welcome relief for her family.

“What makes Children’s different than any other hospital are the services we offer that go above and beyond standard inpatient care,” said Dr. Perkins. “From the supportive care – ranging from physical therapy, psychology and nutrition specialists, music therapy, massage and pain and palliative care – to special events geared towards the whole family, we try to make the time kids and families have to spend in the hospital as good as it can be. A lot of kids appreciate the simple things, too – big TVs and video games.”

In addition to Children’s in-house services, many patients (including Jenna) go to Camp Courage in Maple Lake, Minn., to “just be a kid” for a week each summer. The camp also provides patients’ families with a much-needed break. With Children’s staff physicians and nurses, onsite, to administer medication and keep close watch on their patients, patients and their siblings take part in time-honored camp traditions and let loose for the week.

“Kids of all ages are there, and we’re all going through something really similar,” said Jenna. “There are no strange looks.”

As Jenna and her family prepare to celebrate the end of her chemotherapy treatments, Jenna’s care team at Children’s will be by her side, cheering her on at her end-of-treatment party on June 12. Soon, Jenna will be a part of Children’s Destination STAR (Surveillance and Testing After Recovery) Clinic, which assists her with the transition to life after cancer therapy. She’ll work with Children’s Health and Wellness Team, consisting of staff members from oncology, nutrition services, physical therapy, psychology and child life, as well as her primary care physician for wellness visits to make sure the cancer does not return.

“Going to the hospital for cancer treatments will never be fun,” said Jenna. “But, I’m honestly going to miss coming to Children’s – it’s almost become a second home.”

Visit Children’s Hospitals and Clinics’ Cancer and Blood Disorders Clinic for more information. Children’s first annual Shine Bright Bash on Sept. 13 is to celebrate and support the advancements in pediatric cancer and blood disorder care.

Child free of seizures after laser procedure

Jack Healy, seen with his family, including his mother, Shannon, had a rare, benign tumor called a hypothalamic hamartoma.

By Shannon Healy

Our sweet baby boy, Jack, was born Oct. 18, 2012. When he was only a few weeks old, we started noticing he was having “episodes.” His body would tense up and he would scream like he was in pain. These continued to worsen as he got older and got to the point where he would wake up with them every time he tried to go to sleep. He also began having episodes where he would appear to be laughing but still looked terrified and in pain.

For months, we sought out different specialists to try to diagnose our baby’s episodes. Finally, in April 2013, we were referred to the neuroscience program inside the St. Paul campus of Children’s Hospitals and Clinics of Minnesota. Still unsure of what his episodes were, the staff began following him closely and keeping a close eye on his other symptoms (a large head and low muscle tone).

In August 2013, Jack had an MRI on his brain. Within days, we had a diagnosis: Jack had a tumor on his hypothalamus and his “episodes” were gelastic and dacrystic seizures associated with the tumor. This time was so overwhelming for us, but we finally knew what Jack was battling.

Jack was prescribed a few different seizure medications, but his seizures continued to worsen. At the peak, he was having up to 15 seizures per day; more severe and longer in duration than when he first started having them. They were taking a toll on Jack and our family. He has two older sisters who adore him, and they would get extremely upset every time he would have one of his “fits,” as they called them.

It seemed like the seizures were affecting every aspect of Jack’s life and development. He began refusing all solid foods and would take only bottles of milk. His seizures constantly would interrupt his sleep. He was having severe delays in his gross motor development and also was falling behind in his speech. Defeat and hopelessness were setting in for us.

After watching the tumor for three months, the neurology team at Children’s was able to confirm that Jack had a rare, benign tumor called a hypothalamic hamartoma. We were told that these tumors occur in only one in 1 million people, often appearing in young children. According to Meysam Kebriaei, MD, Children’s neurosurgeon, that number could be underestimated since hypothalamic hamartomas can be missed without high-resolution MRIs.

In December, we met with Dr. Kebriaei, who discussed a new surgical procedure called Visualase, an MRI-guided, minimally invasive laser procedure. He thought Jack would be a great candidate.

Jack would be the first patient at Children’s with a hypothalamic hamartoma to undergo a Visualase procedure. We were thrilled to have this option available to us and made our decision to proceed before we left the clinic that day.

We also learned that Children’s is the only institution in the Midwest to perform Visualase ablation for hypothalamic hamartomas. Dr. Kebriaei explained that Visualase would allow him to treat Jack’s tumor in such a way that will minimize the risk and decrease his recovery time, when compared to the standard, open surgical procedure. 

Jack had seven seizures the morning of his surgery.

Jack’s surgery was scheduled for Jan. 10. He had seven seizures the morning of his surgery; a strange reassurance to us that we had made the right decision. The surgery took the entire day and we were updated by Children’s staff throughout the process. We never left the waiting room.

At the end of the day, Dr. Kebriaei told us that the surgery had gone perfectly. The tumor had been completely disconnected from Jack’s brain. We spent two nights in Children’s ICU with Jack and, amazingly, he was seizure-free.

After going home, Jack experienced an unexpected drop in his sodium level, which required a readmission to Children’s. He spent 2½ weeks in the hospital, where he continued to receive extraordinary care and, in spite of this complication, continued to be free of his debilitating seizures.

It has been almost four months since Jack’s surgery, and he has not had any seizures. It still is hard to believe, considering he had these seizures daily for 15 months. Sometimes, I still expect him to be having one when he starts laughing, but then I realize that he is laughing because he’s so happy!

Jack has been seizure-free since undergoing the Visualase treatment.

With the seizures gone, we now are able to focus on Jack’s development. He is having therapy multiple times each week, and we already are seeing progress in his eating, speech, motor skills and sleep patterns. Just within the past week, Jack has been standing, walking and pushing toys through our kitchen. We are hopeful these parts of Jack’s life only will continue to improve.

This surgery has been life changing for us. We learned later that Jack is one of only 50 people in the country who have undergone Visualase ablation for a hypothalamic hamartoma. After months of feeling grief and hopelessness, we have a renewed hope that our sweet boy is going to have a healthy and happy life. As Dr. Kebriaei told us at Jack’s last appointment, “He’s about ready to take off.”

The neuroscience program at Children’s Hospitals and Clinics of Minnesota unites hundreds of experts in a common mission. We care for more neurology patients, more brain tumor patients and more epilepsy patients than any other hospital in the region. And we do it with some of the most advanced treatments and technologies available today.

Doctor teaches patient’s third-grade class about science of sound, hearing

Leah Tygum, MD (back row, left), visited the third-grade classroom of patient Sophia Nelson (middle row, second from left) at Redtail Ridge Elementary School in Savage to talk about the science of sound and hearing.

Working together was the spark that started a fire of learning and understanding for a class of third-grade students this winter. A collaborative project between staff at the St. Paul campus of Children’s Hospitals and Clinics of Minnesota and Redtail Ridge Elementary School in Savage helped students learn about the science of sound and hearing while creating a lifelong lesson that went well beyond the typical third-grade science curriculum.

“What’s that thing in your ear?” is a question Redtail Ridge third-grade student Sophia Nelson often has heard from classmates. Diagnosed at age 6 with moderate to severe hearing loss in her left ear, Sophia has worn a hearing aid for the past two years, and it has raised questions from several curious friends during that time.

Third-grade teacher Stacy Kodada (left) takes a turn using a small stethoscope placed to Sophia Nelson’s hearing aid.

This winter, when Sophia’s classroom teacher, Stacy Kodada, introduced a science curriculum that included studying the physics of sound, Kodada and Sophia connected about inviting Sophia’s audiologist, Leah Tygum, MD, to visit with Sophia’s classmates. Dr. Tygum, affectionately referred to as “Dr. Leah” by Sophia, has helped transform Sophia’s hearing-loss journey from one that began at diagnosis with fear and concern to one that now is characterized by empowerment and confidence. Since first meeting Sophia, Dr. Tygum has helped provide Sophia with resources to help her – and fellow students – better understand what some might consider Sophia’s “disability.” When invited by Kodada to visit with the third-graders, Dr. Tygum seized the opportunity to help Sophia better educate her classmates on hearing loss and hearing aids.

Prior to the on-site visit, students shared their questions about hearing loss and hearing aids with Sophia and her teacher. Their questions were honest, at times simple, and revealing in terms of a young child’s understanding of those who suffer hearing loss. Students posed several questions, including:

  • What happens inside the ear when you can’t hear?
  • How do you get the sound from the hearing aid into the eardrum into the brain?
  • How do you make a hearing aid?
  • How do you know if you need a hearing aid?

Sophia Nelson (left) had Leah Tygum, MD, visit her third-grade classroom at Redtail Ridge Elementary School in Savage.

On the day of her visit, Dr. Tygum was greeted by a room of students buzzing with excitement and questions. She facilitated more than 90 minutes of hands-on, interactive learning about hearing. Attempting to address all questions, she talked about the science of hearing, what goes wrong with hearing loss and how hearing aids work for those who need them. Using Sophia as a teaching partner, Dr. Tygum took the lesson well beyond Q&A, leading students through a variety of engaging learning activities. Dr. Tygum made a mold of Sophia’s inner ear while the students watched, just as she would do in her office to properly fit a hearing aid. To increase involvement, she then gave students their own individual balls of molding material so they could feel how it hardens into a shape in minutes.

To help make the hearing aid even more “real world” and understandable, the children were each given the chance to use a small hearing aid stethoscope which allowed them to hear sounds in the classroom the way Sophia does when she wears her aid. The exercise proved popular. After listening, children raced back into line in hopes of getting a second chance.

The classroom learning experience helped students understand the science of sound and hearing, but for Kodada it went beyond that.

“Having Dr. Leah come to the classroom allowed the students a different insight into others with hearing disabilities,” Kodada said. “The hands-on experience and real-life demonstration is a wonderful way for students to learn and then be able to apply it to their own life situations.”

While Sophia will probably continue to get questions throughout her life about her hearing loss, she’s certain that none of this year’s classmates will ever ask again “what’s that thing in your ear?”

Photo gallery: Leah Tygum, MD, visits third-grade class at Redtail Ridge Elementary School in Savage (Photos by Michael Nelson)

 

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.