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Story Lines: An Unexpected Challenge Becomes a Parent’s Blessing

peytonby Kylie Mecham
Peyton’s Mom, Grace, ID

A Perfectly Normal Pregnancy

I was overjoyed when I found out I was expecting my third baby boy.  He was 18 weeks and right on schedule.

This pregnancy was no different than my previous two. I gained 45 pounds, measured correctly the entire time, and had no reason for multiple ultrasounds or other diagnostic tests.

I talked my doctor into delivering the baby two weeks early. My husband would have six days off and I needed the extra help with our two other kids at home while I recovered in the hospital. The doctor decided it would be okay, as I had no complications and my other boys had been healthy, eight pound babies.

Peyton is Born

Peyton James was born on Feb. 7, 2014 via C-Section. He weighed only 3 lbs 15 oz. His umbilical cord was the size of the straw. While I had been eating for two, Peyton had been getting very little nutrition from me. That was one of the most heartbreaking things I learned that day. We survived the night, but he spent a lot of it under the warmer. He couldn’t keep his temperature up and his blood sugar was a roller coaster.

Our doctor said we needed to go to Primary Children’s Hospital in Salt Lake City, UT.  We live in Grace, Idaho, which is about two and a half hours away. At 8 a.m., we were told the NICU team from Portneuf Medical was coming to transport Peyton by ambulance to Primary Children’s. My husband was able to ride with him. I have never left any of my babies before they were 5 months old and now I had to let my one day old baby go. My doctor was kind enough to discharge me with promises that I would take care of myself after the C-Section. My in-laws drove me to a Salt Lake City and my parents watched our two other boys.

At the Hospital

peyton2Primary Children’s Hospital would be Peyton’s home for the next 73 days. We met with endocrinologists, nephrologists, and geneticists the first week. The doctors unofficially diagnosed my baby with Neonatal Diabetes while they sent his blood work to a lab in the United Kingdom that specializes in Neonatal Diabetes.

Peyton didn’t have enough energy to finish his bottles, so he had an NG tube inserted to help him get enough nutrients. Every time the nurses tried to inject him with insulin it would just ooze out. He had no body fat and had already lost weight. At this point, he only weighed 3 lbs 9 oz. Next, Peyton had a PICC line (peripherally inserted central catheter) that kept constant low doses of insulin going into his bloodstream.

From day one, Peyton’s glucose levels were a roller coaster, ranging anywhere from 40 to 400 mg/dL. (A normal level is considered to between 80-110 mg/dL). I have never been around a diabetic and had no idea what to do or what to expect. Our lowest moment came when Peyton’s glucose level spiked to 600. He stopped breathing twice and the nurses had to put him on oxygen. That was the worst night of my life, knowing I could lose my little boy.

We got Peyton’s results back from the UK and he was diagnosed with 6q24 Transient Neonatal Diabetes Mellitus. The diabetes is intermittent and will likely go away when he is 3-6 months old and then return permanently when he hits puberty. The way his endocrinologist describes it, his pancreas will be healthy when he is healthy and sick when he is sick.

Brighter Days

Days finally became more positive. Peyton gained weight and we learned how to check his levels with a glucometer and how to do insulin injections.

peyton3I’m so happy to say that on April 22, 2014 Peyton was discharged from the hospital. He is now 9 months old and thriving. Most people have no idea what his first 2.5 months of life were like. He is small for his age, but in time he will catch up.

If someone had asked me five years ago what I though my life would be like, it wouldn’t be this, and yet I am extremely grateful for this trial. I am a stronger person and parent because of it. Peyton started out as a survivor and will always be a fighter. Without the help of our parents and wonderful community, we would not have been able to drive back and forth to see Peyton. Primary Children’s and their amazing NICU nurses saved my baby and took the best care possible of him when I couldn’t be there.

I have a completely different outlook on life now. God could have taken Peyton as his angel, but instead He gave us one of the most special babies and granted us the blessing of being his parents.


Story Lines is a feature on Play Ground telling the personal stories and experiences of people cared for at the hospital. If you would like to share your experience on the blog, please contact us.

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10 Ways to Help Siblings of Cancer Patients

siblingsA cancer diagnosis in a child affects the entire family. Out of necessity, the sick child gets more attention from parents and often receives special treatment or gifts. The sick child’s siblings are very aware of this shift in the family dynamic and are impacted by the emotional turmoil.

Young children may regress in their behavioral development, potty training, and sleeping habits. Older kids may experience feelings of jealously and resentment toward their sibling, or feel a sense of guilt for being well. They may even feel that their sibling’s illness is somehow their fault. Siblings of cancer patients may also feel pressure to take on added responsibilities in an attempt to reduce the stress that the cancer has placed on the family. In many cases, worries become internalized and causes siblings to feel isolated from their peers. These children often have a hard time concentrating in school.

Primary Children’s cancer team understands the ripple effects that cancer has on families. Our Social Workers and Child Life Specialists can provide parents with information that will help them have productive discussions that can benefit the whole family.

As an important part of a family’s treatment plan, parents may also consider a “Sibling Session.” Sibling Sessions provide all members of the family with the opportunity to discuss difficult emotions and family changes. The sessions allow children to openly communicate their feelings about having a brother or sister with a life-threatening disease. By freely sharing their fears and concerns with others, the siblings of cancer patients can more effectively work through their emotions and can increase acceptance of the new family dynamic—and possibly prevent future problems. It can also help to clear up any misconceptions about the illness with age-appropriate teaching.

One key issue centers on communication between well siblings and the child with cancer. Well siblings should be encouraged to maintain communication with the sick sibling, but should be given the choice whether or not to visit the hospital. If the well children want to visit, prepare them beforehand about the state of the sick child and what they will see at the hospital. Use words they understand, but use correct terms like cancer, leukemia, and chemotherapy. Using the proper words makes the situation less scary. If a well sibling does not want to visit, don’t push it. However, you should encourage some form of communication, such as letters, text messages, or using Facetime/Skype.

Other Ways Parents Can Support Siblings of Cancer Patients:

  1. Be open and honest with them about the seriousness of the situation.
  2. Give them permission to express feelings of guilt, jealously, anger, sadness, fear, and love—and validate these feelings.
  3. Spend as much time with the well children as possible—by phone, at the hospital, or in extra one-on-one time at home.
  4. Continue daily routines as much as possible. Maintain the same boundaries and same rules for both the sick and well children. Continue to talk with well children about what’s going on in their lives, including everyday things.
  5. Reassure them that just because their sibling is sick, they won’t become sick as well. And, assure them that this is not their fault and they did nothing to cause the illness.
  6. Keep school teachers informed about the situation so that they will be sensitive about the well children’s feelings and concerns.
  7. Stress the healthy aspects of the sick child, such as his/her sense of humor, interests, and talents.
  8. Be careful not to burden well children with extra duties and thank them for their help.
  9. Give well children permission not to talk just about their sick sibling with others. They may be getting asked a lot about their sibling and this gives them permission to talk about themselves and their accomplishments as well.
  10. Ask friends who want to give the sick child a gift to make it a family present so all siblings will reap the benefits of a caring family and community.
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Don’t Thank Me for Curing Your Child: Perspectives of a Pediatric Oncologist

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by Mark Fluchel, MD
Pediatric Oncologist

As a pediatric oncologist, every patient I treat has a potentially life threatening illness. Although we have a long way to go before we can cure all cancers, pediatric oncology has enjoyed some of the most dramatic improvements in all of medicine over the last 50 years. For many previously incurable diseases, we now enter into therapy with a realistic expectation of a cure.

To play a part in the treatment of a child battling cancer, no matter what the outcome, is truly an honor. As a patient’s primary oncologist, I am fortunate enough to gain the trust of families during one of the most difficult times of their lives, and I watch children grow up over the course of their therapy and follow up. When therapy is completed–and it’s clear  the child is cancer free–the parents will often thank me for curing their child. As much as I would love to take the credit, to be completely honest, it wasn’t me.

Who Deserves the Credit?

“The cure” started over 70 years ago with brilliant, forward-thinking scientists who, early on, chose to study what made cancer cells different from other cells, what made them act in a malignant manner, and most importantly, what made them susceptible and weak. These scientists were the first to develop the precursors to modern chemotherapy–one of our most powerful weapons against cancer.

But their contributions alone weren’t enough to provide a cure for most cancers. It was also the pioneering physicians and scientists who have since set out to develop and test a variety of chemotherapy combinations and schedules for each of the hundreds of different types of cancer. These scientists have dedicated their lives to slowly, over generations, finding better and better therapies with each successive clinical trial.

Clinical trials can’t exist without patients. So “the cure” also comes from the thousands of brave cancer patients and their families who are willing to undergo novel–often untested–therapies. Those patients who share their medical stories with researchers help move the field of cancer care forward.

While the therapies got more and more successful in ridding patients of cancer, they also got more dangerous and more toxic to give, leading to more and more deaths from the therapy itself. And so “the cure” was helped along by equally innovative advances in supportive care, such as broad-spectrum antibiotics, intensive care units, transfusions, nutritional support, anti-nausea medications and pain control, making it possible to forge on with curative, but intense, chemotherapy regimens.

Successful Treatment Comes Down to This

The tools to provide a cure have been developed by intelligent and dedicated people over the last few generations. But for every individual patient, the chance for a cure comes down to the nuts and bolts of safely delivering the best possible cancer therapy, while protecting them from side effects of that care.

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Successful treatment depends on pathologists who can properly distinguish one type of cancer cell from another, allowing the proper regimen to be used. It depends on the surgeons to provide central lines or to remove tumors and on radiologists to help us track down tumors, infections, clots and other ailments that aim to do our patients harm. It depends on the care and study coordinators and the schedulers who keep the physicians and patients on track during very long and complicated treatment regimens. It depends on the social workers and translators that make it possible for families to go through such difficult times while keeping the rest of their lives intact. It depends on the diligent and detail-oriented pharmacists and pharmacy techs checking and double-checking their work to safely make up powerful drugs. It depends on the nurses who learn to safely administer these drugs that have so many potential side effects and then provide the minute-to-minute bedside care required for such complicated patients. For our immune-compromised patients, the cure also depends on hospital staff who maintain a sterile and safe environment for our inpatients.

Most importantly, “the cure” depends on the very people who are usually offering their thanks. First, it is the patient who, while wise beyond their years, refuses to let cancer keep them from being a child. The patient, who withstands countless procedures, nausea provoking medicines, infections, mouth sores, endless nights in the hospital and, of course, the fear of dying, to forge through therapy. Second, the cure depends on his or her parents and other family members who endure–not only the rigorous schedule of therapy, the ER visits, the hospital admissions, the clinic visits, the blood draws, the scans, the daily side effects of therapy–but also, what would likely be even more difficult, the stress, the anxiety, and the fear that comes along with having their child suffer through a life threatening illness. These patients and their families serve as the inspiration for everyone else who plays a part in the care of a child with cancer. And, no matter the eventual outcome of therapy, it is they who deserve the greatest recognition.

When I tell parents, “I didn’t cure your child,” that’s not to say I’m not proud of the part I play. I cherish my role as a guide for the patients and their family and as a liaison between them and the world of cancer care, and I am grateful to the entire team of people that also play a part.


Mark is a Pediatric Hematologist-Oncologist here at Primary Childrens Hospital. He received his undergraduate degree at Miami University his medical degree at Vanderbilt University School of Medicine. He completed a pediatrics residency at Seattle Childrens Hospital followed by a Hematology-Oncology fellowship at the Childrens Hospital of Philadelphia. He enjoys spending time with his family, cycling, mountain biking, skiing, anything soccer, camping and travel.
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A Game Plan to Beat the Flu

flu.jpbThe approach of autumn may bring thoughts of football to mind, but it’s also a time to prepare for the upcoming influenza season. Just as football teams draw up strategies in preparation to play and defeat their opponents, the same approach may be taken with Influenza by preparing a game plan of your own.

Here are some of the best strategies you can use to protect you and your family against influenza:

1. Know Your Opponent

Coaches scout their opponents before the season starts so they know what they will be facing when game day arrives. Knowing what Influenza is and how we can fight it is a great weapon for us. Many people think influenza (flu) is “stomach flu”, but influenza is a respiratory infection caused by a virus. The flu virus can cause severe illness and spreads easily from person to person. Influenza generally causes the following symptoms:

  • Fever
  • Chills
  • Headache/muscle aches
  • Tiredness
  • Sore throat
  • Dry cough

Children may also experience nausea and vomiting. Antiviral medications are available to fight influenza, but they work best when given early in the illness.

2. Defense Wins the Game

While scoring points is critical to winning games, preventing the opponent from scoring is just as important. Score points of your own and build up a good defense against influenza by doing the following:

  • Get vaccinated – The CDC recommends that everyone ages 6 months and older receive an annual flu vaccination. The vaccine is available as a shot and as a nasal mist.
  • Wash your hands – This is the best way to prevent the spread of infections. The flu virus is spread mainly from people sick with influenza when they cough, sneeze or talk. You can also get influenza by touching surfaces like doorknobs and countertops where the flu virus has landed, and then by touching your mouth, nose, eyes.
  • Avoid those who are sick and stay home from school or work if you do get sick with influenza.

3. Prepare in Advance for Your Opponent

Teams begin planning strategies against opponents well in advance of game day. Seasonal outbreaks of influenza can start in October, with peak flu activity usually seen in January or later. The CDC recommends that you get vaccinated as soon as it is available to you. The vaccine will protect you against influenza throughout the entire flu season; however, it takes about two weeks after you get the vaccine to fully develop that protection. There is no truth to concerns about getting a flu shot too early in the year … don’t wait until it is too late!

4. Teamwork is essential

Even one member of a football team who fails to do their part may result in the quarterback being sacked!  Similarly, the family is best protected when each member who is able to do so, receives the flu vaccine. Certain people are at high-risk for developing complications from influenza, including:

  • People with medical conditions, including asthma or other chronic lung disease, neurological disorders, heart disease, liver and kidney disorders, metabolic and endocrine disorders, blood disorders, those with weakened immune systems, and those who are morbidly obese, among others.
  • Those who are under 5 years of age, and particularly those less than 2 years of age.
  • Women who are pregnant.
  • Adults over the age of 65.

Children less than 6 months of age are too young to be immunized, so it is very important for all other family members to be immunized in order to prevent spreading the illness to young infants.

A common fear is that the flu vaccine causes influenza. The flu vaccine does not contain live flu virus, so you cannot get the flu from this vaccine.

Flu vaccines are offered at most doctor’s offices or clinics, through local health departments, at most pharmacies and at many workplaces. This vaccine locator can help you find a place near you where you may be able to get a flu shot.

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Customized Care Plans for Cancer Survivors

survivorshipFor patients with cancer, recovery doesn’t end when the treatment stops.

Unprecedented gains have been made in the cure rates for childhood cancer during the past decade. This progress reflects the medical community’s dedication to cancer research, innovative treatment methods, and a relatively new multidisciplinary approach to cancer care. Because of this steady improvement and the growing knowledge on how to treat the disease, more and more children are beating cancer and becoming classified as cancer survivors.

Of course, fighting cancer takes a huge physical and emotional toll and often has lingering effects that can last long after the cancer has gone. The impact of the disease not only affects the patient, but also the patient’s parents and other family members. As part of our dedication to heal, Primary Children’s Hospital is working hard to ensure that patients and their families continue to receive the care and support they need, even after the cancer treatment has ended. That’s why we’re involved in numerous research studies to help break down any barriers that might stop a patient from continuing to receive care. Our goal is to ensure that all cancer patients receive the physical, emotional, social, and financial support they need to live long, healthy, and productive lives after cancer.

One key initiative at Primary Children’s Hospital is creating customized care plans for cancer survivors. The project is led by Anne Kirchhoff, PhD, MPH, who was awarded a Hyundai Hope on Wheels grant to embark on this project. The goal is to deliver better support for patients in the long term by designing a customized plan that not only maps out the follow-up care needed, but also provides connections to resources.

Customized Care Plans

Every cancer survivor has different needs, based on the type of cancer they had, the treatment they received, and a combination of other physical, emotional, social, and financial factors. Each individualized Survivorship Care Plan will cover the follow-up physical care a patient will require, while keeping a sharp focus on emotional and social needs the patient has throughout the transition from cancer treatment to primary care and life outside the hospital. The customized plan will become a priceless resource for the cancer patient, family members, and the medical service providers that continue to treat the patient throughout the patient’s lifetime.

The project is currently in the needs assessment phase. Dr. Kirchhoff and her team are working with pediatric cancer patients and their families, as well as with physicians, nurses, social workers, and other medical professionals who are part of the cancer care team. The study is also assessing ways that a Survivorship Care Plan can be included in every cancer patient’s medical record, so that important details about the patient’s medical history, and anticipated future needs, can be easily, yet safely shared with all care providers.

Financial barriers to care and access to health insurance are also serious concerns being researched by Dr. Kirchhoff and other Primary Children’s physicians, including Dr. Mark Fluchel. In an effort to find better ways to support pediatric cancer survivors and their families in the long term, studies are being conducted to determine the direct and indirect healthcare costs that cancer survivors continue to face. As we gather more information and identify barriers to healthcare, we are better able to develop customized care plans that address monetary concerns and provide connections to financial supports.

Helping to develop comprehensive Cancer Survivorship Care Plans is one of the many ways Primary Children’s Hospital is working to improve the quality of life for our patients. When a child is diagnosed with cancer, there are a million immediate needs that must be met. Our aim as a hospital is to be there every step of the way—during the fight and after—helping patients not only to make smooth transitions back into their lives, but also to help ensure that their lives are as full and fulfilling as they can be.

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Ebola 101: Answers for Parents

ebolaRecently, the media has been reporting about the spread of Ebola outside of Africa. Many people are concerned about Ebola, but there’s no reason to panic. The Center for Disease Control (CDC) says there’s no sign that an outbreak will happen elsewhere in the world.

When people with Ebola are correctly diagnosed, isolated, and cared for, the risk of passing the disease to others is low. In the meantime, travelers should avoid going to areas where an outbreak of Ebola has been reported. Those who need to travel to these regions should take precautions to avoid becoming infected.

What Is Ebola?

Ebola, or Ebola hemorrhagic fever (Ebola HF), is a contagious and life-threatening disease that affects humans and other primates, like monkeys, gorillas, and chimpanzees. It causes the body’s immune system to go into overdrive — which can lead to severe bleeding, organ failure, and death.

Ebola gets its name from the Ebola River in the Democratic Republic of Congo (formerly Zaire). The disease was first reported in a village on the river in 1976. Since then, there have been a few outbreaks of the disease in western Africa, Uganda, and Sudan

Doctors aren’t sure how the first person gets Ebola at the start of an outbreak, but they think that people may pick up the virus from contact with infected animals. Tropical animals in Africa believed to carry the virus include other primates, fruit bats, porcupines, and forest antelope.

Once someone has Ebola, he or she can pass the virus to others in different ways. People can get the virus by handling or touching drops of blood, urine (pee), or other body fluids of someone infected with the disease, or through contact with objects (such as needles) that have been contaminated with infected blood or fluids.

Because of this, Ebola can spread quickly within families and in health centers where caregivers or others don’t wear proper protective equipment, like gloves and masks.

How Contagious Is It?

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Ebola is contagious, but not as contagious as the influenza (flu) virus. With Ebola, a person is only contagious after he or she starts to feel sick with symptoms from the virus. In areas where there is an Ebola outbreak, anyone who isn’t feeling well should get immediate medical help and avoid contact with others.

After starting to feel ill, people with the disease are contagious for as long as the virus can be found in their blood and body fluids, even if they recover from the symptoms of the disease. The virus can remain in a person’s body fluids for weeks after recovery.

Signs & Symptoms

The first signs of Ebola can appear from 2 to 21 days after someone has been exposed to the virus. Most people’s symptoms begin 8-10 days after exposure.

Early symptoms of Ebola include:

  • Fever
  • headache
  • Joint and muscle aches
  • Weakness and tiredness
  • Sore throat
  • Chills

As the disease progresses, other symptoms can appear, including:

  • Bleeding inside and outside of the body
  • Nausea and vomiting
  • Diarrhea
  • Skin rash
  • Chest and stomach pain
  • Trouble with breathing or swallowing

In its later stages, Ebola can lead to severe bleeding, shock, coma, organ failure, and death, usually from low blood pressure.

Diagnosis

An early and accurate diagnosis of Ebola is important to help prevent the spread of the disease. But because early symptoms are similar to those caused by other common diseases, it can be hard to diagnose Ebola quickly.

If a person has Ebola symptoms and has been in an area where Ebola is known to exist, he or she needs to be immediately isolated from other people and examined by trained health professionals wearing the proper protective gear.

Doctors can check for the presence of the Ebola virus by performing a number of blood tests, liver function tests, or virus isolation tests in a laboratory.

Treatment

Most people who get Ebola need intensive care in a hospital or other well-equipped medical center. Treatment involves keeping them well hydrated, maintaining their oxygen and blood pressure levels, replacing lost blood through transfusions, and treating symptoms and complications as they come up. Patients also need to be isolated from the public during treatment to help prevent the disease from spreading.

Some experimental treatments for Ebola have been effective when tested on animals, but are not officially approved for use in people.

Prevention

There is no vaccine to prevent Ebola, although doctors are working on developing one. It can be hard to prevent the disease since doctors aren’t entirely sure how it infects people at the start of an outbreak.

The best way to guard against Ebola infection is to avoid areas that have had outbreaks. Those traveling to Africa, particularly West Africa, should first check the CDC’s Ebola website to see where Ebola is present and avoid those regions.

Those who have to go to an area where Ebola is present should avoid contact with infected people, wash their hands often, and not touch or eat wild animals. Those working with Ebola patients must wear a mask, gloves, eye shields, and other protective clothing.

Public health measures are focused on isolating and treating people who are infected with the Ebola virus. Any needles or other equipment used in their treatment should be disposed of properly. The remains of those who die from the disease must be kept isolated and buried promptly by trained professionals wearing full safety gear.

Ebola is one of the deadliest diseases known to mankind. But with early, aggressive treatment and new breakthroughs, doctors are having more success than ever treating it. And with the possibility of a vaccine on the horizon, Ebola eventually might go the way of smallpox and other diseases that are no longer a threat.


This information is part of Primary Children’s KidsHealth website. This resource features information on a variety of health topics for you and your children.

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Primary Children’s Hospital Evaluating Patient for Possible Ebola Virus

PCH-Press-ConferenceUpdate on Patient with Possible Ebola Virus – October 3, 2015 – 6:00 p.m. (MST)

Primary Children’s Hospital has now eliminated the possibility of the Ebola virus. The sample sent to the Centers for Disease Control and Prevention (CDC) on Thursday, Oct. 2, has tested negative for Ebola virus and the patient has been discharged.

Primary Children’s Hospital admitted a patient earlier this week, who had traveled to an area of west Africa not currently affected with Ebola, who presented with symptoms that raised some concerns for the Ebola virus.

“Primary Children’s used this opportunity to test our preparedness systems and ensure that they worked as planned,” says Andrew Pavia, MD, Primary Children’s Hospital’s Chief of Pediatric Infectious Diseases. “The possibility, though extraordinarily rare, that this patient had Ebola posed enough concern that we felt it was important to activate our preparedness plan and make sure we were taking all necessary precautions.”

Primary Children’s Hospital and other large referral hospitals in Utah have been developing Ebola preparedness plans for more than two months. This planning has taken place in consultation with the Utah Department of Health and the CDC.

Primary Children’s Hospital in Salt Lake City, Utah, held a press conference and released the following statement – October 2, 2015 – 1:00 p.m. (MST)

Primary Children’s Hospital has admitted a patient, who had traveled to an area of west Africa not currently affected with Ebola. The patient presented with symptoms that raised some concerns. However, based on what we know so far, it is extremely unlikely that this is Ebola.

We are taking this opportunity to use our preparedness systems and ensure that they work well. In addition to maximally protecting our staff and patients, we’re working with the Centers for Disease Control to completely eliminate the possibility of Ebola.

Even if Ebola were to be seen in the hospital, it is important to know that it would pose no risk to other staff, patients or visitors, since Ebola is not airborne and not easily transmitted.

Primary Children’s Hospital, and other large referral hospitals in Utah, has been developing an Ebola preparedness plan for more than two months. This planning has taken place in consultation with the Utah Department of Health and the CDC. We are prepared to isolate persons who may have exposure, test for Ebola, and provide care. We are confident if we had a patient with Ebola that we could provide care safely.

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