Monthly Archives: March 2014

Children’s at the Capitol: A simple test can save a child’s life

Since the newborn-screening program began, more than 5,000 children have been saved. (iStock photo / Getty Images)

Every parent hopes and dreams for a happy, healthy child. Unfortunately, those dreams don’t always come true. Sometimes children are born with serious conditions that impact their health, but if caught early, many can be treated and the severity lessened. Since the newborn-screening program began, more than 5,000 children have been saved; children like Zak and Ella. Thanks to newborn screening, Ella was diagnosed early with Cystic Fibrosis (CF) and because the blood spots and test results were saved, doctors were also able to diagnose her older brother with CF when he became sick.

The Newborn Screening Program tests newborns between 24-48 hours after birth for more than 50 rare, life-threatening disorders; disorders that if left untreated, can result in illness, physical disabilities, learning and developmental disabilities, hearing loss or even death. Yet early treatment and diagnosis, medications, and/or changes in diet can prevent or lessen the impact of most of these health problems.

Two years ago, changes were made to the program that drastically altered the amount of time blood spots and test results could be retained. Now, after only 71 days parents and providers no longer have access to blood spots, despite the fact that testing can often take up to six months or longer to confirm a diagnosis. After two years, parents have no access to data (unless they make a special request) and therefore lose the ability to access that critical information for the purposes of retroactive investigation or sibling comparisons. And lastly, these changes mean that the department of health cannot use de-identified information for research to create new life-saving tests.

This year, legislation is being proposed to return Minnesota’s Newborn Screening program back to the nation-leading one it once was. House File 2526/Senate File 2047 would allow parents to store their children’s blood spots and test results indefinitely, preserving access to the life-saving information they need. We owe it to our kids, their parents and our communities to strengthen programs that can be used to not only save lives but to protect those in the generations to come.

Until further legislative changes take place, parents can request to have their blood spots and test results retained for a longer period of time on the Minnesota Department of Health website.

Take action!

You can help restore Minnesota’s Newborn Screening Program to its nation-leading status by calling members of the Senate Judiciary committee by Thursday, March 20th, 2014 at 5 p.m. and asking for their support of the Newborn Screening bill, H.F. 2526/S.F. 2047.

Calling is easy and it just takes a minute! (Phone numbers below). If you are a constituent of the person you call, make sure to let them know! Look up your legislators and compare them to the list below. Here is a sample of what you can say:

———

Hello,

My name is [your name] and I am calling to ask for Representative [last name]’s/Senator [last name]’s support of the Newborn screening bill, H.F. 2526/S.F. 2047.

This bill will allow parents and families to have access to the newborn screening spots and test results for a longer period of time, allowing for follow-up care re-analyses and sibling comparisons. I support this bill because it will help all children have the best chance for a healthy start in life. I hope [Legislator’s name] will support it as well, by voting in favor when the bill is heard in committee.

Thank you!

Once you call committee members, send a note to Katie Rojas-Jahn at Katherine.Rojas-Jahn@childrensmn.org to let us know you took action. 

Here’s who to call:

Senate Judiciary committee members

Chair: Senator Ron Latz 651-297-8065

Vice Chair: Senator Barb Goodwin 651-296-4334

Senator Warren Limmer 651-296-2159

Senator Bobby Joe Champion 651-296-9246

Senator Dan D. Hall 651-296-5975

Senator Kathy Sheran 651-296-6153

Senator Kari Dziedzic 651-296-7809

Senator Scott J. Newman 651-296-4131

Five Question Friday: Danielle Horgen

March is Brain Injury Awareness Month, and to recognize it, we chose to highlight Danielle Horgen, PA-C, of Neurosurgery at Children’s. She took some time to talk about her work with patients and life outside of Children’s.

Danielle Horgen, PA-C, has been in Neurosurgery at Children's since October 2013.

How long have you worked at Children’s?

I started working in Neurosurgery in October 2013.  I love working with children and their families and am so happy to be a part of the care provided at Children’s Hospital.

Describe your role.

I am a physician assistant in the Neurosurgery department. We have a great team consisting of three neurosurgeons, three nurse practitioners and one physician assistant. We all work together to make sure our patients receive quality care. My role is to interview and examine patients, order and interpret images, prescribe medications and provide education to patients and their families in both clinic and inpatient settings. I get to see many of these children in consultation, first-assist in their surgeries and manage their care during the hospital stay and follow-up visits. It is very rewarding to be present throughout the entire process!

Do you have a favorite memory from working at Children’s?

It’s difficult to pick a favorite memory. We see some pretty amazing kids, all with unique stories and experiences, and certainly their own little personalities that are so fun to work with! I’ve been told some great jokes, participated in dance parties with nurses and patients on the floor and received some motivational speeches from some pretty inspiring kids. I once got a lesson from a little boy with a brain tumor about being happy and staying positive. Although this field has its share of difficult times, I feel that it’s an honor to be able to guide a family through these moments.

How do you spend your time outside of work?

I have been married to my husband, Darin, for eight years, and we have a chocolate Lab named Casey. I love spending my time with these two! We also have great families in Iowa and Minnesota, including 10 nieces and nephews that we love dearly and see as often as we can.

What’s one interesting fact about you?

I played tennis, softball, gymnastics and volleyball growing up. During my senior year of high school, my tennis team won the state championship in Iowa. (It probably didn’t hurt that the two top ranked players in the state played on my team, too). Despite this, my husband, who never played tennis, still can beat me almost every time.

Sleep health in children

Teaching kids to fall asleep on their own at the beginning of the night without your presence is an important skill for them to learn. (iStock photo / Getty Images)

By Karen Johnson, RN, CNP

Getting enough sleep is essential for your child’s growth and health. Studies show that many children don’t get enough sleep each night. This can result in behavioral problems, mood swings and poor school performance. A lack of sleep also can cause problems with memory, concentration and problem solving.

Occasional bouts of sleeplessness or restless nights are normal for kids as their bodies and brains develop, and the tips below can help you ensure your kids are getting enough rest.

But sometimes your child may not be getting enough sleep due to a sleep disorder. One of the most common sleep disorders in children is Obstructive Sleep Apnea (OSA). Signs of OSA in children are loud snoring, restless sleep, gasping and hyperactivity when awake. Risk factors for having OSA in children are having enlarged tonsils or adenoids, being overweight or certain other genetic or health disorders. Speak with your child’s health care provider if you think that your child might have OSA.

Here are some tips for helping your kids get a good night’s sleep:

Create a soothing and regular routine for sleep: A routine can help your child get ready for bed much easier. Studies show that children who have a bedtime routine wake up fewer times during the night. The bedtime routine should be the same every night, such as reading one book and singing one song, not lasting more than 15 to 20 minutes.

Maintain a consistent bedtime and wake time: Keeping the wake time and bedtime the same, even on weekends and vacations, is important to help maintain circadian rhythm.

Be conscious of light and darkness: Both are very influential in sleep-wake cycles. Bright light in the morning is influential in setting the circadian rhythm and helping children wake easier. Opening the curtains in the morning to let in the sunlight is the most powerful source of light; artificial light can be helpful as well. Dim the lights in the evening prior to the bedtime routine to cue your child’s internal clock that it’s time for sleep.

Keep electronics out of the bedroom: The light from televisions, computer screens, video games and mobile devices like cellphones can prevent your child from sleeping. It’s best to turn off all electronics at least one hour before bedtime, and in their place, do a calming activity such as reading or coloring.

Naps are important: Younger children need regular and predictable naps during the day. When your child is napping only once a day, don’t let him or her nap late into the afternoon, as this will interfere with the child’s ability to fall asleep at the regular bedtime.

Teach your child how to self-soothe: At an early age, put your child into his or her crib or bed when he or she is drowsy but still awake. Teaching kids to fall asleep on their own at the beginning of the night without your presence is an important skill for them to learn. Children naturally wake two to six times a night, and if they do not know how to self-soothe, they will cry to alert you that they are awake. Not only does that disrupt their sleep, but yours as well.

No caffeine allowed: Caffeine is not recommended for kids, but if you allow your child any, make sure it is before 3 p.m., as it can delay the onset of sleep at bedtime.

Consistency is key to success: Be patient and persistent, as the investment is well worth it when your child is sleeping better.

Make sleep a priority for your child and family: Teach your child about the importance of sleep by being a good role model in your own sleep habits.

Karen Johnson, RN, PNP, is a nurse in the Children’s Sleep Center at Children’s Hospitals and Clinics of Minnesota. Her interest in pediatric sleep medicine stems from her passion to assist children in improving their sleep. She views sleep as a necessary function so that children can be alert, focus in school, reach their learning potential and have energy to play and be kids.

The Children’s Sleep Center is one of the only pediatric-centered programs in the region and one of only a handful that is nationally accredited by the American Academy of Sleep Medicine.

Girl Scout Day at Children’s – Minneapolis

Children's is hosting Girl Scout Day on March 29.

Are you the parent of a Girl Scout or the leader of a troop? If so, mark your calendar for Girl Scout Day at Children’s – Minneapolis 10 a.m. to noon Saturday, March 29.

We’re excited to be hosting our second Girl Scout Day at Children’s to bring troops together and honor their generosity and hard work for Children’s patients and their families. An exciting day of celebration will include Children’s speakers, a tour of the hospital’s public spaces, a few fun activity stations and a photo booth with Children’s mascot, Twinkle!

To learn more about Girl Scout Day, register your troop or learn about ways your troop can make a difference, contact Maggie Overman at Maggie.Overman@childrensmn.org.

NOTE: Space for this event is limited and registrations are taken on a first-come, first-serve basis, so sign up today.

Signs and symptoms of a concussion

(iStock photo / Getty Images)

March is Brain Injury Awareness Month. As part of that, we’re sharing some concussion safety tips.

What is a concussion?

A concussion is a type of traumatic brain injury caused by a blow to the head or body. Symptoms can show up right after the injury or may not be noticed until hours or days later.

Signs and symptoms to watch for:

  • Headache or dizziness
  • Drowsiness or sleepiness
  • Focus or concentration problems
  • Blurry or double vision
  • Balance or coordination problems
  • Disorientation or mental confusion
  • Memory loss
  • Slowed thinking or speech
  • Blank or vacant look
  • Loss of consciousness
What to do if your child displays concussion symptoms:
  • Immediately remove your child from activity
  • Seek medical attention
  • Tell your child’s coach or teacher
Children’s Concussion Clinic

651-220-5230
8 a.m. to 4:30 p.m. Monday-Friday

Children’s Specialty Center (ground floor)
2530 Chicago Ave. S.
Minneapolis, MN 55404

Garden View (third floor)
347 N. Smith Ave., Suite 300
St. Paul, MN 55102

Five Question Friday: Bobbie Carroll

Patient safety is our top priority at Children’s. In recognition of National Patient Safety Awareness Week, Bobbie Carroll, RN, MHA, and our senior director of patient safety and clinical informatics, shares how we’re working to maintain the highest standards of safety and quality for our patients and their families. 

Bobbie Carroll, RN, MHA, is senior director of patient safety and clinical informatics at Children's.

How long have you worked at Children’s?

I have worked for Children’s 12 years.

Describe your role.

I am a registered nurse, and during my clinical career I worked in general pediatrics in the hospital and clinic settings. My interest and career moved into informatics when working on a project to help translate medical terminology for computer programmers when they were starting to develop electronic medical records. In time I started working as a project manager with a consulting firm, working on a variety of projects, which introduced me to Children’s. I started here working on a project converting our organization’s electronic systems onto our electronic medical record. During this project and after, Children’s recognized the value of informatics to assure we look at the clinical workflow and partner with staff as we develop, design and introduce technology at the bedside. Patient-safety opportunities are at the forefront of our efforts. Using technology wisely can help our organization in our pursuit of zero patient harm. I am fortunate to have the opportunity in leading our organization’s informatics team as well as patient-safety efforts.

It’s National Patient Safety Awareness Week. What kind of things does Children’s do to make sure we are providing a safe environment for our patients?

We partner with our employees to support a culture of safety at Children’s and reduce patient harm. Some of the ways we do this is learning about our stories and events reported by our employees through our safety learning reporting (SLR) process. Our Quality and Safety team reviews every SLR that is submitted and look for system gaps and opportunities that we can address to reduce the potential for error. This is a very powerful tool in assuring we have a pulse on the care we provide our patients.

Children’s was the first pediatric hospital in the U.S. to use a closed-loop medication-administration system using two-way communication between infusion pumps and the electronic medical record. The system has helped us avert potential medical errors and has advanced patient safety throughout the hospital.

Across Children’s, we also focus our attention on hospital-acquired conditions such as adverse drug events, hospital-acquired infections, pressure ulcers, patient falls and other preventable harm events. We also work with staff on the creative ideas they have to prevent harm in their care areas.

When you were a kid, what did you want to be when you grew up?

I really wanted to be an airline “stewardess” back in the day! Now they are referred to as airline attendants and, while I respect their work, the position doesn’t seem near as glamorous as it did when I was a little girl.

How do you spend your time outside of work?

I am pretty low-key outside of work and love spending time at home. I am somewhat of a “foodie,” so I like trying new recipes out on friends and family. I also like to plan our various vacation locations to experience new places. I have three beautiful granddaughters that I enjoy spending time with who constantly remind me about the important things in life.

 

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.