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Wednesday, November 26, 2014

Launching new, cutting edge prematurity research centers


Today is World Prematurity Day and communities around the world are joining us to raise awareness of this global problem. It also marks the launch of our newest Prematurity Research Center at the University of Pennsylvania, to continue our commitment to provide all babies a healthy start in life.

The March of Dimes is investing a total of $75 million over 10 years in five prematurity research centers. Today, the March of Dimes Prematurity Research Center at the University of Pennsylvania, our fourth and newest center was launched. Physicians and researchers will conduct team-based research at the Hospital of the University of Pennsylvania and The Children’s Hospital of Philadelphia. Also collaborating on the project are investigators from Columbia University Medical Center in New York and University of Pittsburgh Magee-Womens Research Institute. In Pennsylvania, 10.7 percent, or more than 16,000 babies, were born preterm in 2013. The center will focus on the energy and metabolism of the cells in the reproductive tract, structural changes in the cervix, and contribution of the placenta to normal and preterm labor.

Dr. Jennifer Howse, President of the March of Dimes says “We’re excited to add the expertise of the University of Pennsylvania’s renowned scientists to our specialized network of investigators nationwide working to discover precisely what causes early labor, and how it can be prevented.”

Our other prematurity research centers

Our first center opened at Stanford University School of Medicine in California in 2011. Stanford University was followed by the Ohio Collaborative, a partnership of universities in Ohio from Cincinnati, Columbus and Cleveland, which launched in 2013.

Our third Prematurity Research Center was launched earlier this month at Washington University, St. Louis Children’s Hospital in Missouri. Washington University’s research center provides a collaborative, team-based research approach to discovering the causes of preterm birth in order to develop new strategies to prevent it. In Missouri, 11.3 percent, or more than 8,000 babies, are born too soon each year. The Washington University center will focus on how sleep patterns and environmental factors change a woman’s risk for premature birth and will document changes in the structure of the cervix and uterus in connection to preterm labor.

Stay tuned…A fifth prematurity research center is coming soon. For more information on our prematurity research centers, visit us here. With your support and the help of these distinguished research centers, more babies will have a healthy start to life.

To find out more about World Prematurity Day and how to become involved, visit our Facebook page.

Monday, November 24, 2014

Staying positive in the NICU

Having a baby in the NICU is stressful. Very stressful. When a baby is born prematurely, the roller coaster ride of the NICU experience is emotionally, physically and mentally taxing for parents.
Premature birth is the birth of a baby before 37 weeks of pregnancy. One in 9 babies is born prematurely, or 15 million babies globally! Of these babies, one million will die. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems. Just knowing these statistics provokes anxiety and worry in parents. If you are a parent with a baby in the NICU, observing the ups and downs of your baby’s progress day to day can be heart wrenching and particularly wearing.

Depression more common in the NICU
Studies have shown that “in the month after delivery, parents of preemies are significantly more depressed and anxious than parents of term babies,” according to Linden, Paroli and Doron MD in the book Preemies – The Essential Guide for Parents of Premature Babies, 2nd Edition. The authors report that “Besides depression and anxiety, they (parents) were more apt to feel hostile, guilty, and incompetent at parenting and to isolate themselves socially…An early delivery is itself so scary that even many parents of healthy preemies react with shock and anxiety.” Given the stress associated with seeing your baby in the hospital, and the ups and downs of slow progress – it is not hard to imagine that depression is seen more often in parents of preemies than in parents of children born at term.

Many new mothers experience the “postpartum blues” or the “baby blues.” Baby blues are feelings of sadness you may have three to five days after having a baby. These feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. By about 10 days after the baby’s birth, the baby blues should go away. If they don’t, tell your health care provider who will determine if you may have postpartum depression (PPD), which lasts longer and is more serious than baby blues.
Signs of PPD include feeling tired all the time, having no interest in your usual activities, gaining or losing weight, changing your eating habits, having trouble sleeping or concentrating, and thinking about suicide or death. If you have five or more of these signs and they last for two weeks or longer, you may have PPD. Sometimes mothers of preemies develop postpartum depression as a result of the severe stress and anxiety experienced by having a premature baby. Even fathers of preemies can become depressed.

What can help?
There are many ways to feel better.  Treatments for depression may include all or some of the following: healthy eating, regular sleep and exercise, talking with friends, family or a professional counselor/therapist, lowering your stress by taking time to relax and avoiding alcohol. In addition, your health care provider may give you medication specifically designed to help with depression.
Talking to other parents who have gone through the NICU journey can be very helpful. The parents on the March of Dimes’ online community, Share Your Story, “talk” to one another and share their experiences. It is a comforting and supportive community, where all NICU families are welcomed.

When will you feel better?
The length of time a parent feels down, anxious or depressed can vary, and may depend on the health of your baby, and the length of NICU stay. But usually, parents of preemies begin to feel more balanced as their baby grows, and “by the end of the baby’s first year, their psychological distress, on average, has been found to be similar to those of mothers of term babies” according to the Preemies book. But, each baby and NICU stay is unique, so each parent’s journey to feeling better is unique.

Bottom line
Having a baby in the NICU is extraordinarily stressful and difficult. You need to take care of yourself in order to be able to take care of your baby. It is important to be aware of the signs or symptoms of depression and to speak with your health care provider if you have any concerns at all.
The sooner you seek help, the sooner you will feel better.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view the Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Wednesday, November 19, 2014

The One Time I’ll Admit to Being a Cheerleader

It’s November and everyone’s cheering on their favorite football team and showing their support by wearing their team’s colors and jerseys.  But for me there’s another team I’m cheering for and their color is purple.  I’m cheering for the researchers who are making strides every day to end prematurity for good.  I’m cheering for the doctors who treat our preemies and turn their stories from hopeless to hopeful and I’m cheering for the parents of preemies who are hurled into an unknown and frightening world and come out stronger than they ever thought they could be.  This is my team and though I root for them every day, month in and month out, November is the month we’ve chosen to recognize them through World Prematurity Month. 

Every year 15 million babies are born too soon and 1 million of those babies die.  Yet something so common, something that happens every day, here and around the world, is completely lost on the majority of us.  So as not to seem as if I’m blaming anyone for not realizing prematurity’s reach, if you had asked me 5 years ago what or where the NICU was in a hospital I would have given you a blank stare.  If you had told me having a baby at 40 weeks should never be a given, I would have laughed and said, not me.  Today I can’t even imagine life absent of fears and heartache prematurity can bring.

Our family has been living with prematurity since 2010.  Our middle son, now 4 years old, was born at 26 weeks, weighing 2lbs, 3 oz.  Our youngest son, born at 32 weeks, died 4 short days after he was born.  We’ve got both sides of prematurity covered in our small family, the good and the bad.  And those of us who have had preemies know they’ll always be preemies.  It’s not just a term for a baby born too early, it’s a lifetime of ups and downs, struggles and fear, joy and heart ache. 

So selfishly I wonder why prematurity is still such a novice idea to those outside of the tight knit preemie world.  And for those who realize how much we are all affected by prematurity, where are the concerted efforts to build support, educate and raise money to fund more research to end this for good?

Now don’t get me wrong, I recognize and appreciate the amazing strides that have been made thus far to stop prematurity.  I consider my 4 year old a success story. He made it out of the NICU in three months and if you look at him, you’d never tell he had such a rough start.  But get to know him and you’ll learn of his multiple hospital stays with chronic lung issues, seizures, catching colds and viruses every other week and his struggle just to play out his life as normally as any other four year old. But, as appreciative I am for the medical procedures that saved him, they still couldn’t save our youngest son, Bennett.   I KNOW there is so much more we could be doing if only people recognize the enormous need.

And before you start to tell yourself it couldn’t or wouldn’t happen to you, it can.  It happened to us twice even though we had phenomenal medical care and did all the right things, it still happened.  My husband and I are doing everything we can to help stop prematurity but we can’t do it alone.  Hands down the best day will be when our team wins and we can proudly wear our purple and know the victory our team pulled off was the ultimate game changer. 
By Sara Raak

Monday, November 17, 2014

Nate's Story

Starting a family wasn’t easy for us.  After we learned Sophia was pregnant with our first child, our joy knew no bounds.  We committed to taking every precaution necessary to ensure a healthy pregnancy.  Regular doctor appointments, eating a nutritious diet, light exercise, reducing stress – we did everything.  We also planned a “baby moon” for one last get away.  But before leaving for a few days in the sun, Sophia received a check up to make sure she and the baby were healthy.  The doctor said both were in great health and wished us a good vacation.  So at the start of Sophia’s 22nd week of pregnancy, we flew to the US Virgin Islands.

After returning home, Sophia experienced intense cramping so we scheduled a doctor’s appointment for morning.  Immediately upon examining Sophia, our doctor said words that are still hard to believe - she was having a miscarriage.  We had no warning.  None!  One minute we’re in the middle of a healthy pregnancy enjoying ourselves in the Caribbean and the next we’re losing our baby.

Sophia was admitted to INOVA Fairfax on November 4th and gave birth to our son at 12:05 am, on November 5th.  Nate was born in critical condition, weighing less than 1.5 pounds, and exactly 4 months before his due date.  Doctors immediately took Nate to the NICU and so began the longest and most painful journey of our lives. 

The doctors gave Nate less than a 50% chance of survival.  Even if he survived, Nate had a 1 in 3 probability of having a severe disability.  These are terrifying odds. 

For 125 days, Nate fought hard for his life.  Twice we watched in horror as doctor’s administered chest compressions to save his life.  Words cannot adequately describe the fear you feel watching such a horrible scene unfold right in front of your eyes. 

Nate suffered – a lot.  At two week old, he endured open-heart surgery.  Nate had tubes in his lungs and a machine to breath for him.  He withstood all sorts of poking and prodding.  We’ve never seen someone so sick fight so hard and prevail.


It was worth it, though, because after four months in the hospital, we finally brought our baby
home.  Nate is a wonderful son – he’s sweet, cares about other people, extremely funny, whip smart, amazingly curious about all things, and the love of our lives.  He makes us smile every day.
 

The March of Dimes helped save Nate’s life.  Nate’s immature lungs posed the greatest threat.  The doctors diagnosed Nate with respiratory distress syndrome.  The main treatment is a drug called Surfactant, which the March of Dimes helped develop by funding critical research.   The March of Dimes also cares for parents.  Sara, the NICU family support specialist, provided the emotional support inside the NICU that parents need to cope with such a stressful situation.  Without Sara’s support, our four month journey would have been even more difficult to endure. 

Wednesday, November 12, 2014

What grade did your state receive?

This year we have some great news to report: the national premature birth rate fell to 11.4 percent in 2013 – the lowest in 17 years — meeting the federal Healthy People 2020 goal seven years early. Despite this progress though, the U.S. still received a “C” on the 7th annual March of Dimes Premature Birth Report Card because it fell short of the more-challenging 9.6 percent target.

“Achieving the Healthy People 2020 goal is reason for celebration, but the U.S. still has one of the highest rates of preterm birth of any high resource country and we must change that,” said March of Dimes President Dr. Jennifer L. Howse. “We are investing in a network of five prematurity research centers to find solutions to this still too-common, costly, and serious problem.”

The March of Dimes Premature Birth Report Card compares each state’s premature birth rate to the March of Dimes goal of 9.6 percent of all live births by 2020. On the 2014 Report Card, 27 states and Puerto Rico saw their premature birth rates improve between 2012 and 2013, earning better grades for five of them: Iowa, Virginia, Arkansas, Nevada and Oklahoma. Five states earned an “A,” including California, Maine, New Hampshire, Oregon and Vermont. Twenty states earned a “B,” 20 states received a “C,” two states and the District of Columbia got a “D,” and only three states and Puerto Rico, received an “F” on the Report Card. Click here to see how your state your did.

The Report Card also tracks states’ progress toward lowering their premature birth rates by following three principle risk reduction strategies:
• 30 states and the District of Columbia reduced the percentage of uninsured women of childbearing age;
• 34 states, the District of Columbia, and Puerto Rico reduced the percentage of women of childbearing age who smoke;
• 30 states and Puerto Rico lowered the late preterm birth rate, babies born between 34 and 36 weeks gestation.

Premature birth is the leading cause of newborn death, and babies who survive an early birth often face serious and sometimes lifelong health challenges, such as breathing problems, jaundice, developmental delays, vision loss, and cerebral palsy. Even babies born just a few weeks too soon have higher rates of death and disability than full-term babies.

The March of Dimes is also calling for a nationwide effort to reduce U.S. premature births to 5.5 percent of all live births by 2030.  Seven other developed countries already have premature birth rates below 6 percent, and 15 have rates below 7 percent.  The U.S. rate of 11.4 percent in 2013 is one of the highest.  The U.S. ranked 37th out of 39 high resource countries in 2010.

“The United States spends more money per capita on health care than almost any other country in the world, and yet our premature birth rate and our infant mortality rate are among the highest.” says Dr. Howse.  “The U.S. should aspire to be among the best globally in preterm birth rates and give all our children a healthy beginning.”

Monday, November 10, 2014

The special language of special needs

If you have a child with special needs, you have no doubt heard tons of words, initials or acronyms that you did not understand. You may have had to stop and ask for clarification or a definition. Or, even worse, you did not ask and were lost as the conversation zoomed on and you kept trying to make sense of it all.

The world of special needs, including delays, disabilities, early intervention and special education, has its own language. The sooner you familiarize yourself with the many acronyms, the easier it will be to navigate your child’s world and be an effective advocate. Without this info, it is like being in a boat (or a kayak) without a paddle.

Just to drive my point home, here is an analogy. Would you ever take an upper level language class without first taking the introductory course? Would you take Algebra II without first taking basic math? Would you take your driver’s test without looking at the manual first? You’d be lost (or at least I would be), and nothing would make sense to you. This is why you need to get the basics down, especially before you go into meetings that pertain to your baby or child’s intervention services.

Help is here

Here is my blog post with tons of acronyms to use as a cheat sheet. It is appropriately called Learning the Lingo.

Next, you can find many more on the CPIR website, where the NICHCY materials have migrated. Their Alphabet Soup has an exhaustive list of words with their meanings.

Lastly, Words and terms – a whole new world breaks out the terms pertaining to early intervention and then for special education.

So check them out, click on the highlighted terms to learn more, and print out the acronym sheet for your reference. You’ll be glad to have this info in one tidy place. Then, when the conversations turn to IFSPs or LREs, you will know exactly what everyone is talking about. Soon, you’ll be paddling upstream with confidence!

 

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Friday, November 7, 2014

Hugs Heal" World Prematurity Day Shirts and Infant One Piece




Get your Hugs Heal shirt today and wear it on November 17th to raise awareness for World Prematurity Day! The "Hugs Heal" message spreads the word about the power of Kangaroo Care.

These shirts are made of high-quality soft blended cotton material in a gorgeous purple shade with gray lettering. Shirts are available in women's sizes S, M, L, XL, XXL and men's sizes S, M, L, XL, XXL and XXXL. The total cost is $25 and includes free USPS First Class shipping - plus $10 of your purchase goes directly to support the March of Dimes mission!

Now available - Youth size shirts and infant one piece!
           Quantities are limited so get your shirt today! We will be taking pre-orders now for delivery in mid-November.


 

Wednesday, November 5, 2014

Prematurity awareness month: here’s what’s happening

It’s November, and everyone at March of Dimes is excited because it is Prematurity Awareness Month. We will be very busy getting the word out about the serious problems of preterm birth. There are ways that you can participate in helping us end prematurity.
Take a look at what we have in store:

November 17th is World Prematurity Day
Help raise awareness by wearing purple (the color of prematurity and the March of Dimes).

Twitter chats
Join in the conversation on one or all of the following chats:

November 5th – Chat on preterm birth with Mom’s Rising. What is preterm birth? Are you at risk? Is it ok to schedule your baby’s birth? What if you had a prior preterm birth – will it happen again? What can you  do?  Ask questions and get answers on this chat at 2pm ET. Use #WellnessWed.
November 12th –  Have you or someone you know lost a baby due to prematurity or birth defects? The loss of a child is so unfair. Please join us as we share stories at 8pm ET. Use #losschat.

November 13th – Chat on Early Intervention (EI) services with the CDC, NCBDDD and CPIR. Many preemies are developmentally delayed or have disabilities. In fact, premature birth is the leading cause of lasting childhood disabilities. Early Intervention services can help your child improve. Learn how to access them and get your questions answered at 2pm ET. Use #EIchat.
November 14th  – A 24 hour chat relay is happening all across the globe! The March of Dimes will be chatting about parenting in the NICU at 1pm ET. Join us at that time and tune in any other time during the day for the 24 hour chat relay. Use #Worldprematurityday to watch or participate.

November 19th – Chat on Preemies with NICHD. One in 9 babies is born preterm. Learn who is at risk, what you can do to have a healthy baby, and what is being done to help end prematurity. Join us at 2pm ET and use #preemiechat.

News Moms Need blog topics

We will be blogging throughout the month on topics related to prematurity including: NEC, diabetes, new research, “who’s who” in the NICU, and other important topics.

Facebook
“Like” and follow us on Facebook on the World Prematurity Day page and on the March of Dimes page.

These are just a few of the events we have on our calendar. Check back throughout the month for the most up-to-date prematurity news and information. We hope you join us and tell all your friends! With your help, we will get closer to achieving our mission of ending prematurity.

Monday, November 3, 2014

November is Prematurity Awareness Month


Celebrities Raise Awareness about the Need to Give Babies a Healthy Start in Life


An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth. Although the United States has seen sustained improvement in its preterm birth rate, it has one of the highest rates of preterm birth of any industrialized country.


Next month, organizations and individuals around the globe will observe Prematurity Awareness Month and World Prematurity Day. World-famous photographer Anne Geddes, and international superstars Thalia and Hilary Duff, will join other celebrity parents to spread the word that premature birth is a very serious health problem for babies worldwide.

“I’m working with the March of Dimes to prevent premature birth, the leading cause of newborn death. Every newborn deserves a healthy life,” said Mrs. Geddes. “With each week these precious babies stay and thrive in the womb, the risk of death and disabilities is reduced.”

Prematurity Awareness Month events are scheduled nationwide throughout November. Prominent buildings and landmarks in several states, including the Empire State Building in New York City, will be shining in purple light to symbolize hope for a healthy start for more babies. There also will be professional education programs, as well as family events and gatherings.

“Raising awareness of premature birth is the first step to defeating it,” says Dr. Jennifer L. Howse, president of the March of Dimes. “Our thanks go out to the celebrities, state officials and business and community leaders who are working to bring attention to this serious infant health problem. March of Dimes is dedicated to giving all babies a healthy start in life. We’re investing in research and programs to prevent preterm birth so more women will have full-term pregnancies and healthy babies.”

November 17 will be recognized around the globe as the fourth annual World Prematurity Day. More information is available at www.facebook.com/WorldPrematurityDay, where families and volunteers can share stories and videos about babies born too soon. The page features an interactive world map showing the home place for each story told.

Anne Geddes, renowned for her baby photos has created a signature image of a baby born too soon, cradled in the hand
of a Leonardo DaVinci-inspired sculpture. She donated the image of baby Alfred, who was born 8 weeks early, weighing just two pounds, six ounces, to the March of Dimes, which made the photo the center of its 2014 World Prematurity Day campaign. “Tiny baby Alfred sends a fragile and yet powerful message. The initial heart-wrenching sight of such a tiny human being, quickly gives way to admiration for their sense of strength and their will to survive against all odds,” she explains.

As a volunteer ambassador for the March of Dimes, Mrs. Geddes is featured in a global public service message, which is being shared internationally to raise awareness about the need to prevent preterm birth and the work being done to give more babies a healthy start in life. Her message can be seen at here.

Thalia, Latin Grammy Award-winning recording artist, actress, and media personality, serves as March of Dimes global ambassador. Thalia will reach millions of fans worldwide through social media and a World Prematurity Day public service messages which can be viewed in English and Spanish.

Actress, singer and busy mom Hilary Duff also is lending her voice to the prematurity campaign. As part of her year-round volunteer support of the March of Dimes, she recently released a public service announcement featuring her new music in support the Foundation’s global awareness campaign. The video message is available.

The March of Dimes Prematurity Campaign is supported by corporate partners including Johnson & Johnson and Cigna, and gifts from millions of individual donors. Prematurity Awareness Month is nationally sponsored by First Response and the WellPoint Foundation.

About the March of Dimes
The March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. The March of Dimes is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs.

For the latest resources and health information, visit our websites marchofdimes.org and nacersano.org. To participate in our annual signature fundraising event, visit marchforbabies.org. If you have been affected by prematurity or birth defects, visit our shareyourstory.org community to find comfort and support. For detailed national, state and local perinatal statistics, visit persistats.org. You can also find us on Facebook or follow us on Twitter.

Wednesday, October 29, 2014

Unexplained muscle weakness in children

 

We have all heard of the children in Colorado who have been hospitalized with unexplained muscle weakness. It has so far affected 10 children with an illness involving the brain and spinal cord.  Let us be clear, we have been told the children have been tested and it is NOT polio. The CDC and the California Department of Health have been looking further into the cause of some cases of paralysis earlier this year. However, differences exist between the California and Colorado cases, including age of the patients, timing of cases, etc.  You may have also heard that some of the children in Colorado have had cold-like symptoms and have tested positive for Enterovirus D68; while others have not.  As the doctors, labs, various health departments and the CDC work on finding out why the children are sick, there are some things you can do:
• Be up to date on all recommended vaccinations, including polio, flu, measles and whooping cough. It is important that you and your children are vaccinated.
• Wash your hands frequently with soap and water, especially after blowing your nose, going to the bathroom or changing a diaper.
• Avoid sick people.
• Clean and disinfect objects that have been touched by a sick person or by a visiting child.
One thing is key!  If your child is having problems walking, standing or develops sudden weakness in an arm or leg, contact a doctor right away.
According to the AAP, “Doctors and nurses who see patients with unexplained muscle weakness or paralysis in the arms or legs are testing them to see if they might have this sickness. They also are reporting information to their state or local health department.” The CDC will be issuing treatment guidelines in the next several weeks. The American Academy of Pediatrics is also monitoring cases of Enterovirus D68.
CDC features: Unexplained Paralysis Hospitalizes Children, 2014
AAP News: CDC continues investigation of neurologic illness: will issue guidelines, 2014

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