Archive for the ‘Research’ Category

Addressing preemie care head on in 2013

Wednesday, November 28th, 2012

By Dr. Ellen Bendel-Stenzel

As the Star Tribune so beautifully illustrated with its Thanksgiving cover story, “Home After 98 Days In Preemie Land,” the issue of prematurity is a heart-wrenching and persistent challenge for doctors and parents-to-be.  Preterm birth can, and does, affect every race, ethnicity, religion, age, socioeconomic status and demographic.

Here in the Upper Midwest, more than 200,000 babies are born every year. And about 22,000 of those babies or little more than 10 percent are born premature. However, as a preterm infant, you couldn’t ask to be born in a better place than Minnesota. We have some of the highest survival rates in the world, and yet we received a “B” on the March of Dimes 2012 Premature Birth Report Card.  Why?  Because even though an infant born beyond 28 weeks gestation, or 7 months of pregnancy, has a nearly 100 percent chance of survival, these infants still remain at risk for respiratory problems, feeding issues, developmental delays and behavioral and social disabilities.

Unfortunately, the amazing medical progress we’ve made over the past 25 years, which lead to the improved outcomes for so many premature infants, has begun to plateau. Now we as health care providers need to take the lead and drive future improvements.

There will always be high-risk pregnancies, and ensuring the best outcomes for these scenarios is not dependent upon reducing the prematurity rate alone.   We need to be proactive and provide optimal care to both mother and baby, so that we can decrease the incidence of prematurity and improve the outcomes of those born early or with complex medical conditions. In short, we need to address the needs of the infant long before a mother’s due date.

In early February of next year, Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital will open The Mother Baby Center in Minneapolis. It will be the first of its kind in the Upper Midwest, and one of only a few in the nation where mother-baby care is fully integrated. This new Center will bring together maternal and infant specialists, with the understanding that every pregnancy has the potential to be high risk.

With a proactive approach, the goal is clear: optimize care from conception to delivery.  This means the sharing of information across all nine months of the pregnancy whenever possible.  It means providing quick access to specialists when concerns for the health of either the mother or baby arise. It means collecting data to look at the root cause of prematurity in our own community.  It means collaborating in clinical trials that start at the first obstetrical visit and end in the pediatrician’s office at school age follow-up.  And it means continuing to incorporate the latest technologies and therapies on the Newborn Intensive Care Unit (NICU), while simultaneously measuring their effects and proving their validity.

While simple in theory, these are lofty goals that are difficult to implement and execute, but are well worth the effort.  As physicians we must continue to set the bar high and help moms achieve term delivery whenever possible, while at the same time improve the care for the babies that are born early.  In doing so, we’ll create a recipe for success that will provide enormous benefits to Minnesota babies and families.

Dr. Bendel-Stenzel is a neonatologist and co-director of clinical research for the Newborn Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

Posted in Advocacy, NICU, Research, The Mother Baby Center | No Comments »

Mom finds comfort in cancer research team after rare diagnosis

Wednesday, August 22nd, 2012

This is a guest post by Kim Sondergard, whose son Tony was diagnosed with cancer when he was a few months old. The Sondergard family recently attended the 2012 PPB Family Meeting at Camp Courage.

My son Tony’s entry into this world was a bit bumpy.

He was born with a fever and pneumothorax (air pockets) in both lungs. Doctors and nurses tended to him for four days in the special care nursery. When he was fever-free and able to keep his body temperature within a normal range on his own, my husband and I were able to take our baby boy home. For four months, Tony was healthy.

He developed a cough and a fever, so we took Tony to his pediatrician. A chest X-ray showed what his pediatrician thought was a cyst. It was thought to be a congenital cyst and could be removed through surgery. Tony was admitted to Children’s Hospitals and Clinics of Minnesota, where he had surgery. From his nurses, to his pulmonary team, to the surgeons, to his anesthesia team – everyone rocked!

During our follow-up appointment with the surgeon two weeks later, we learned that the cyst that was removed was abnormal. Our baby had cancer. It was a rare form of childhood lung cancer called pleuropulmonary blastoma, or PPB. I didn’t know how to react.

Tony

The surgeon made an appointment for us to meet with Dr. Yoav Messinger, an oncologist who specializes in this type of cancer and is among the personnel at the International Pleuropulmonary Blastoma Registry. The PPB Registry is a collection of physicians, scientists and data analysts from many institutions, including Children’s, who have been working together for 20 years to evaluate PPB cancer cases.

Dr. Messinger gave us a deeper understanding of Tony’s cancer, and he explained the treatment options. Unfortunately, there wasn’t significant research on treatment options because this cancer was so rare. At the time of our meeting with Dr. Messinger, we also were introduced to Gretchen Williams and Dr. Jack Priest – also part of the PPB Registry.

Tony’s dad and I, as well as our relatives, provided the PPB Registry with DNA samples for a genetic study. They have found in many cases children with PPB carry the DICER1 gene. However, no one in his family, including Tony, carries this gene.

Tony

Dr. Messinger, the Medical Director of the PPB Registry, knows genetic testing needs to continue. “If we can determine in advance which children are at risk for PPB, we will do our best to try and diagnose PPB when it’s in the earliest, most curable stage.”

Two months after Tony’s diagnosis, a CT scan indicated another spot on his right lung. We decided at that time we’d proceed with chemotherapy. Dr. Messinger and Dr. Priest also recommended the spot be removed. Ultimately, we learned it was scar tissue – not cancer.

For an entire year, Tony underwent weekly chemo treatments. He also had CT scans every three months. None showed recurrence.

This past May, Tony celebrated his third year of being cancer free. Next month, he turns 5. He’s happy, active and healthy – all a parent wants for her child.

I would not have gotten through Tony’s diagnosis without the staff at Children’s and the PPB Registry. They were there step by step.

I believe in and support the continued research of the PPB Registry, so they can determine PPB’s cause and how to cure it. Not all kids diagnosed with PPB are as lucky as Tony.

Posted in Cancer and Blood Disorders, Research | No Comments »

Children’s takes steps to minimize radiation exposure

Tuesday, June 12th, 2012

MRI Scanner

There’s often a lot of information in the media and medical journals about CT scans (known as Computed Tomography) and how they expose children to radiation. Most recently, The Lancet, a medical journal, published a study that reports that children who get multiple CT scans are at increased risk of leukemia and brain cancer.

We know children are more sensitive than adults to radiation exposure and that CT scans are one of the most common and significant medical exposures of children to radiation. We also know that although the risk of radiation from a CT scan is low, it’s not zero. There can be a slight increased risk of cancer later in life.

“We take this seriously, and we do everything we possibly can at Children’s to minimize the level of radiation exposure to our patients while preserving the quality of the images we need,” said William Mize, MD, a pediatric radiologist.

Here’s how:

  • Our scan settings are adjusted according to your child’s size and age.
  • We work under the ALARA (as low as reasonably achievable) principle. Some of the steps we take include limiting the area of exposure to include only the area of specific medical concern and shielding sensitive areas such as breast shielding during chest CT.
  • We don’t recommend a CT scan as a diagnostic test unless it’s necessary. When appropriate, we suggest other imaging tests such as an ultrasound or MRI (or magnetic resonance imaging) which do not use radiation.
  • We continue to re-evaluate our protocols and explore new opportunities for reducing radiation.

For many medical problems in children, the CT scan is invaluable. Often, it’s the only test that can provide the information needed to optimally treat children. There are potential risks and benefits to all medical treatments and procedures.

The CT scan is capable of viewing all the internal organs, which may lead to a diagnosis that was previously only possible with surgery. When we recommend a CT scan, the benefits to a child’s health from the information obtained outweigh the minimal risk associated with the low dose of radiation.

Where kids are concerned, rest assured that their safety and health are our top priority.

For more information about our procedures involving radiology, click here.

To read the Society for Pediatric Radiology’s response to The Lancet article, click here.

Posted in About Children's, Research, Safety | No Comments »

Supporting health research through the National Children’s Study

Wednesday, April 4th, 2012

Children’s is excited to support, and ultimately benefit from, the National Children’s Study. Even though most children grow up healthy and live longer than ever before, the rates of asthma, diabetes, obesity, and other health problems continue to rise.  We still have many questions about how genetics and the environment—the air we breathe, the water we drink, and the communities we live in—affect health, especially our children’s health.

The National Children’s Study (NCS) is the largest research study of genetic and environmental influences on children’s health ever conducted in the United States.  The Study enrolled women before or during pregnancy and will follow their children until they turn 21 years old.

Information learned from the Study could help doctors and other health care providers help children achieve the best health and may prevent health problems in children and adults.

The participation of families from many different racial, ethnic, and socioeconomic groups across the country is critical for the success of the Study.  More than 100 study locations in the United States were chosen through a selection process than ensures families are enrolled without any bias.  There are currently two active Vanguard (or pilot) NCS locations in Minnesota.

In early 2012 it was determined that sufficient numbers of women had been enrolled in study and enrollment of new participants ended as of March 1, 2012.  Current efforts are focused on retaining enrolled participants and evaluating the pilot phase in preparation for the Main Study which is planned to begin in 2013.

Families and children who participate in the Study are making an important contribution to the health of future generations.  More information about the National Children’s Study can be accessed at nationalchildrensstudy.gov.

Posted in Research | No Comments »