News Moms Need

When you have a child with special needs, your mind tends to always center on the milestones you hope your child will achieve, and often forget that there are many things your child can already do, and often do very well. It’s so easy to get wrapped up in therapy and homework. Often, you only see the areas that need improvement, and don’t see (for lack of time or energy) the areas of talent or achievement. (Does this sound familiar?) When this happens, it is time to pause and breathe. And better yet, change your focus to take time to celebrate.

My daughter always loved to dance – you name the kind -she did it. Then that passion moved to drama, which is where she really found her niche. As a tiny tot, she used to memorize the dialogue to different shows or movies, and then act them out with her dolls, word for word. Later in high school, she joined the theater troupe. For a kid who had a speech and language delay, seeing her speak on a stage (often reciting Shakespeare), was mind boggling to me. Theater was her passion, and despite any struggle she was experiencing at the time, her dancing or theater pulled her through, and ended her day on a happy note. Even now, as she is a young adult, she participates in community theater productions.

Keep introducing your child to new things

All children have interests and passions. Does your child take things apart and then put them back together? He may be mechanically inclined. Does he build spectacular Lego cities and characters? He may become an architect or builder one day. Does your child dress in awesome couture-like outfits, draw, paint, play an instrument, enjoy storytelling, or participate in sports? You get my point – the list is endless and the possibilities are limitless. If you do not see a passion at the moment, keep introducing her to new things and watch as one emerges.

Very often, your child’s passion can be cultivated so that it becomes more than just a pastime. But even if it doesn’t become something more substantial, the accomplishment of any hobby or interest is something to celebrate. Cultivating a talent is a process. Like a flowering bulb pushing up through the spring earth, one doesn’t know what color the blossom will be, or how big or sweet the smell. You just have to water it and give it sun and protection, and then watch as it blooms on its own.

So, this is a gentle reminder to pause, breathe and focus on the positive moments in your little one’s life. Then, sit back and enjoy the moment as you see your little one in a whole new light.

What is your child’s passion? How did you help her to find it? Please share your tips.

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 Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

Are you and your family immunized against measles?

On my way to work today, I heard that the number of measles cases in the United States has continued to rise. At last count, there were 78 cases in 11 states. Most of those cases originated at Disneyland or Disney’s California Adventure theme park. Visitors who went to the parks in December 2014 who were infected with measles spread it to people who were unvaccinated.

What should you do?

If you or your child have not been vaccinated against measles, or if your child is under 12 months old, you need to take precautions. According to the California Department of Public Health: “Any place where large numbers of people congregate and there are a number of international visitors, like airports, shopping malls and tourist attractions, you may be more likely to find measles, which should be considered if you are not vaccinated. It is absolutely safe to visit these places, including the Disneyland Resort, if you are vaccinated.”

The only way to protect against measles is through immunization. The measles, mumps and rubella (MMR) vaccine protects against the measles disease, as well as the mumps and rubella diseases. Your baby gets the MMR vaccine in two doses: the first between 12 and 15 months, and the second between 4 and 6 years. Adolescents and adults should be up to date on vaccinations. If you are not sure if you have had the vaccine, talk with your health care provider.

Measles and pregnancy

If you are thinking of having a baby, and are not sure if you have been vaccinated, speak with your health care provider. A simple blood test can tell you what vaccines you may need. If you need to get the MMR vaccine, make sure you do so before becoming pregnant. Wait at least 1 month before trying to get pregnant after the shot. If you are already pregnant, get the MMR vaccine after you give birth.

Measles on the rise

Last year, the U.S. had a record number of measles cases. The Centers for Disease Control and Prevention (CDC) states there have been 644 confirmed measles cases reported for 2014 in the United States. This is the highest number of cases since the U.S. declared that measles was eliminated in 2000. Measles is still common in other parts of the world. International travelers may carry it to the U.S. where they can spread the disease to other people who have not been vaccinated.

As many as one in 20 children with measles develop pneumonia. This is the most common cause of death from measles in young children, according to the CDC. For every 1,000 children with measles, one or two will die.  Children under 5 and adults over 20 are at higher risk for getting complications from the measles virus, including hospitalization and death.

Symptoms of measles typically start to appear one to two weeks after exposure to the virus. Symptoms include a runny nose, watery eyes, cough, a high fever and finally a rash. Measles is so contagious that any child who is exposed to it and is not immune will most likely get the disease.

Special thanks to the CDC and the Public Health Image Library for permission to use the above photo of a boy’s face after three days with measles rash.

Did you know that a significant number of women of childbearing age fill prescriptions for narcotic painkillers each year? If a woman becomes pregnant while taking these medications, she is at an increased risk of having a baby with birth defects.

Opioid-based (narcotic) pain medications, such as codeine, oxycodone, hydrocodone, or morphine, are used to treat moderate to severe pain. Many women are unaware that the use of these medications during pregnancy, even when used as directed, may increase their chance to have a baby with a serious birth defect of the brain, spine, or heart. They also have an increased risk of preterm birth.  Use of opioid-based painkillers during pregnancy can also cause babies to suffer withdrawal symptoms when they are born. This is a condition known as neonatal abstinence syndrome or NAS, and it is a growing problem in U.S. birthing hospitals.

A new report from the CDC found that on average, about 28% of privately insured and 39% of Medicaid-enrolled women of child-bearing age filled a prescription for an opioid between 2008-2012.

Since half of all pregnancies are unplanned, women may be prescribed opioid-based pain medications before they know they are pregnant.  “This highlights the importance of promoting safer alternative treatments, when available for women of reproductive age. We must do what we can to protect babies from exposure to opioids,” stated Coleen A. Boyle, PhD, MSHyg, Director of CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD).

“If you are using an opioid painkiller, you should also be practicing effective birth control, “ says José F. Cordero, MD, MPH, a pediatrician, birth defects expert formerly at CDC, and member of the March of Dimes Board of Trustees. “If you decide to get pregnant or do become pregnant, tell your health care provider about all the medications you are taking, right away. You may be able to switch to a safer alternative.”

The CDC’s Treating for Two: Safer Medication Use in Pregnancy initiative offers information to women and their healthcare providers about medication use during pregnancy. Go here to get more information.

Did you know that many states track and monitor birth defects? It is one way for them to better understand birth defects in order to try and prevent them. Today, I welcome guest blogger Melissa Gambatese, MPH, Research Analyst in the Perinatal Data Center here at the March of Dimes. Melissa will introduce you to the world of birth defects surveillance systems. It may sound a bit high tech or like something from a spy movie, but it is really a way for states to monitor birth defects and to hopefully use the information to help combat them and help families.

Every 4 ½ minutes a baby is born with a birth defect in the US. Birth defects are generally referred to as abnormalities of structure, function or metabolism (body chemistry) present at birth that result in physical or mental disabilities, or death. While some birth defects are caused by genetic conditions passed from the baby’s parents, the causes of most birth defects remain unknown.

The March of Dimes is committed to improving the health of babies by preventing birth defects. One of the ways to prevent birth defects is to better understand which populations are at highest risk for birth defects. This information allows public health professionals, policymakers, and health care providers to implement targeted prevention strategies. It also helps to provide adequate services to people affected by them. States monitor groups of people at risk for birth defects by establishing a surveillance system.

What is a surveillance system?

A surveillance system is a tool used in public health to collect information on a countless number of diseases and conditions. It provides a structure for identifying cases according to a standard definition. It also provides a way to analyze and then communicate surveillance findings to stakeholders, such as health care providers, researchers, and policymakers.

Surveillance systems can be passive, meaning they rely on physicians and medical staff to report cases to the state surveillance team, or active, meaning the state surveillance team reviews vital records, hospital diagnoses, and other data sources to identify cases.

Why do states have birth defects surveillance systems?

States use these systems to monitor trends in birth defects prevalence, or the number of babies born with a birth defect out of all live births born each year. States also use surveillance data to further research on the causes and prevention of birth defects and to link affected families to needed services.

States report surveillance data to the National Birth Defects Prevention Network (NBDPN), an organization of clinical and public health professionals dedicated to maintaining a network of state birth defect surveillance programs. Each year, NBDPN publishes a report containing prevalence data from all states with a birth defects surveillance system.

Do all states have a surveillance system?

The majority of US states (37 states and Puerto Rico) have a type of birth defects surveillance system.

Where can you find your state’s birth defects data?

Prevalence estimates reported by NBDPN for select states and birth defects are now available on PeriStats, the March of Dimes’ free statistical website. It contains the latest maternal and infant health-related data for the US.

Are birth defects preventable?

There is still so much we need to learn about preventing birth defects, but there are things that a woman can do before and during pregnancy to increase her chances of having a healthy baby. For example, it is known that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (such as cleft lip/palate).

It is also known that folic acid taken before and early in pregnancy can help prevent certain defects of the brain and spine. Read this post to learn more ways to help prevent birth defects.

March of Dimes grantees are pursuing a variety of approaches aimed at preventing and improving treatment for many birth defects. Read about our research here.

We often receive questions about “preemie-proofing” from parents who are preparing for their preemie’s homecoming. You may have waited a long time for this day, but bringing your baby home, and leaving his team of doctors and nurses behind can be overwhelming for many parents. Here are some tips to help ease the transition:

Before your baby comes home:

• Speak with the NICU staff at your baby’s hospital. They are very knowledgeable about what your baby may need when going home.

• If you clean your home before your baby’s arrival, (or if you want to brighten up your preemie’s nursery by painting it) do so before he comes home. This way you can avoid any strong smells that may linger.

• Clean your house of dust and germs. Vacuum and dust often, take out the garbage and keep your kitchen and bathroom clean. Also, tell your baby’s health care provider if you have any pets. Pet hair can track in dirt and dust.

• If your baby needs oxygen, carefully observe the cleaning requirements, particularly for the humidifier, and understand the safety recommendations.

Once your baby is home:

• Your baby should not be exposed to smoke, aerosol sprays or paint fumes. These irritants can cause wheezing, coughing, and difficulty breathing.

• Maintain a smoke-free household. Post signs around your house if you need to so family and friends are aware of your smoke-free home.

• The guidelines for cleaning and storing bottles, nipples, pacifiers, breast pump equipment and milk or formula are the same for preemies as term babies.

• If your baby is on an apnea monitor, be sure you can hear the alarm from every room in your house.

• Wash hands after blowing your nose, diapering your baby or handling raw food. Don’t let adults or children who are sick, have a fever or who may have been exposed to illness, near your baby.

Visit our website here for more great resources for parents after they bring their baby home from the NICU.

What do you remember being helpful when you brought your preemie home? What tips would you recommend to new parents?

My girlfriend just returned to work last week after having her baby. I went to visit her yesterday to catch up and see how things were going. While she was glad to be back at work, she was stressing about how she was going to be able to continue breastfeeding. As a Certified Lactation Counselor, I happily told her that breastfeeding after returning to work can be a challenge, but it can be done successfully. Here are some tips to make things a little easier:

Before you return to work

• Talk to your employer and let them know what you need to continue breastfeeding. Employers with more than 50 employees are required to give you reasonable time and a private space (that is not a bathroom) for pumping when you go back to work. If there are less than 50 employees, your employer may still be willing to work with you to enable time and space for pumping breast milk.  It is best to familiarize yourself with the federal and state laws as they pertain to your company, and your specific job (exempt or non-exempt). Here are creative solutions to help you and your employer find ways for you to continue breastfeeding. You can search by industry to find the best solution.  Nursing moms who get support from their employer miss less work and are more productive and loyal to their company.

• Whether you have insurance through the ACA (Affordable Care Act) or private insurance, take the time to learn about your coverage. Here is a great tip sheet from the American Academy of Pediatrics that explains the federal guidelines, the differences in health plans and how it affects breastfeeding. This is a must read! Scroll down to the end for a helpful diagram.

• Start back to work on a Wednesday or Thursday. Consider working a few hours a day at the beginning. Having a shorter work week will allow you to get used to your new schedule and figure out your pumping, milk storage and new daycare routine.

• Get a breast pump. If you need help deciding if you should buy or rent one, read our blog. In many cases, breast pumps are covered through your insurance plan, so be sure to inquire. Proper cleaning of the pump is a must; follow the manufacturer’s directions.

• You will need somewhere to keep your breast milk cold. Make sure you have a small cooler with ice packs to bring to work if there’s no refrigerator, or a bag to keep in the fridge. Have labels handy to mark your bottles with the date you expressed the milk.  Learn guidelines for storing and thawing breast milk, here.

Once you have returned to work

• Express milk during the times you would normally feed your baby.
• Keep breast pads handy in case your breasts leak.
• Pump more on the weekends to increase your milk supply.
• Take care of yourself: get as much rest as you can, eat healthy foods and stay hydrated.

Keep talking with your employer about your schedule and what is or is not working for you.  Share the online resource above, and let them know you’d like to continue working together to make a plan that benefits you both.

Going back to work after having a baby can be a difficult transition for many women. Visit our website to learn tips on how to plan for and manage the transition.

Special thanks to Coleen Boyle, PhD, MSHyg, Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for today’s guest post.

Each January, in recognition of National Birth Defects Prevention Month, we at CDC strive to increase awareness about birth defects and reflect upon all that we have learned so far.  We know what causes some birth defects, such as Down syndrome and fetal alcohol spectrum disorders. However, for many birth defects, the causes are unknown.

The good news is that, through research, we’ve learned a lot about what might increase or decrease the risk for birth defects. For example, we know that drinking alcohol during pregnancy can cause a baby to be born with fetal alcohol spectrum disorders. Taking certain medications, having uncontrolled diabetes, and smoking cigarettes are all things that can increase the risk for birth defects. We also know that getting enough folic acid, a B vitamin, starting at least one month before getting pregnant and during early pregnancy lowers the risk of having a baby with a major birth defect of the brain or spine.

Each of these research findings represents a building block, a step toward healthy birth outcomes. Understanding the potential causes of birth defects can lead to recommendations and policies to help prevent them. A great example of this is the research on folic acid, which led to the recommendation that all women who can become pregnant should get 400 micrograms of folic acid every day. This important research also contributed to the evidence needed to add folic acid to foods such as enriched breads, pastas, rice and cereals.

These building blocks start to form our foundation for understanding birth defects and help us identify what we still need to study in the future. While we have a learned a lot, much work remains. We at CDC continue to study the causes of birth defects, look for ways to prevent them, and work to improve the lives of people living with these conditions and their families.

To learn more about birth defects research, we invite you to join us at 1PM EST on January 20, 2015 for CDC’s live webcast titled “Understanding the Causes of Major Birth Defects: Steps to Prevention.” Experts in birth defects research will present an overview of current and historical efforts to understand the causes of major birth defects. They will also discuss the challenges in turning research findings into effective prevention. For more information on the upcoming session, please visit http://www.cdc.gov/cdcgrandrounds/.

This year, we encourage you to become an active participant in National Birth Defects Prevention Month.  Post facts about birth defects marked by the hashtag #1in33 on social media or share your story and how birth defects affect you and your family. Join us in a nationwide effort to raise awareness of birth defects, their causes and their impact.

Antiviral medications have the ability to lessen flu symptoms, shorten the duration of the illness, and prevent serious complications.

As you may have already heard, this year’s flu season is being described by the CDC as “severe.” We are only about half-way through flu season and there have already been 26 pediatric deaths. The main strain of flu this year is H3N2, which unfortunately is a nastier flu virus than the other viruses. It typically leads to more hospitalizations and deaths than other strains of the flu.

The CDC is now recommending that doctors prescribe antiviral medications to high-risk patients suspected of having the flu even before the diagnosis is confirmed.

People at high-risk include:
• Children younger than 5 years of age and especially kids younger than 2 years old
• Children of any age with long-term health conditions including developmental disabilities
• Children of any age with neurologic conditions.
• Pregnant women 
• Individuals over the age of 65

How do antiviral medications help?

Antiviral medications work because they help to prevent the flu virus from multiplying in your body. These medications should be started as soon as possible after signs of illness develop —ideally within 48 hours. The most common flu symptoms include fever, headache, chills, muscle aches, coughing, congestion, runny nose, and sore throat. Children may also experience vomiting and diarrhea.

There is almost no age at which someone is too young for antiviral medications. There are two antiviral drugs that have been approved by the U.S. Food and Drug Administration for treating the flu in children. One of these can be used in children as young as two weeks old, while the other can be used to treat those 7 years and older.

Dr. Frieden of the CDC says “Antiviral flu medicines are underutilized. If you get them early, they could keep you out of the hospital and might even save your life.”

And believe it or not, it is not too late to get your flu shot. Although this year’s vaccine is not a good match for the H3N2 strain causing most of the illness this year (about 2/3rd of the H3N2 viruses are different than what is in the vaccine), it may still offer some protection, especially against the other strains of flu.

The bottom line:

• This year is a severe flu season, especially for those who are considered high-risk for complications.
• The CDC is urging doctors to prescribe antiviral medications for high risk patients when flu is suspected, even before the diagnosis is confirmed.
• If your baby or child has flu-like symptoms, contact your pediatrician right away and ask if antiviral medications may be appropriate.
• It is still not too late to get your flu shot.

Each year in the United States, about 120,000 babies (1 in 33) are affected by birth defects. Birth defects are health conditions that are present at birth. They change the shape or function of one or more parts of the body. Birth defects can cause problems in overall health, how the body develops or how the body works. Not all birth defects can be prevented, but there are things that a woman can do before and during pregnancy to increase her chances of having a healthy baby.

January is Birth Defects Prevention Month and this year’s theme is “Making Healthy Choices to Prevent Birth Defects—Make a PACT for Prevention.” If you are thinking of having a baby, follow this PACT:

Plan ahead:
• Get as healthy as you can before becoming pregnant.
• Make sure you are taking 400 micrograms (mcg) of folic acid every day. Studies show that if all women in the United States took the recommended amount of folic acid before and during early pregnancy, up to 70 percent of neural tube defects (NTDs) could be prevented. Folic acid also may help prevent other birth defects, including cleft lip/palate and some heart defects.

Avoid harmful substances:
• Do not drink alcohol, smoke cigarettes, or use street drugs.
• Make sure you are aware of any harmful exposures at work or home and do your best to avoid them.

Choose a healthy lifestyle:
• Eat a healthy diet that includes fruits, vegetables, whole grains, low fat dairy, and lean proteins.
• Exercise and stay physically active.
• Make sure you work with your health care provider to get any pre-existing medical conditions, such as diabetes or high blood pressure, under control and managed.

Talk to your doctor:
• Get a preconception checkup before pregnancy and make sure you go to all of your prenatal visits during pregnancy.
• Discuss all medications you are taking with your doctor. This includes both prescription meds and over-the counter medicines.
• Review your family health history.

So this year, make a PACT to prevent birth defects by following these healthy guidelines. The National Birth Defects Prevention Network’s website has more information.

I have never been one to commit to a New Year’s resolution, in part because I would feel badly if I did not follow through and achieve my goal. Most of the time, my resolution was such an unobtainable goal that I set myself up for failure. Sound familiar?

Kids with special needs all too often face immense challenges and have to try and try again to reach goals that their peers seem to attain with ease. As a parent, it becomes very important to carefully pick and choose goals and to try to make sure your child is not facing undue hardship or repeated failure. As with any struggle, a little bit of a challenge is good – it spurs you to move onward and provides a huge sense of relief and pride when you reach your goal. But, too much struggle can bring exhaustion of body, mind and spirit, which will not help your little one in the long run.

As a parent of a child with special needs, it is important to set goals and have aspirations for your child. But it is essential that the goals are reasonable. There is no sense in whittling away at your child’s confidence by setting a bar too high and then having to deal with the negative self-image your child experiences if the goal is not achieved.

As you settle into the mindset of New Year’s resolutions, think of goals that are measurable and achievable. Perhaps set three small goals instead of one big goal. Or, let your child decide what he would like to focus on (if he is old enough to decide). For example, it could be that riding a tricycle is something he really wants to be able to do and will work on that goal for a few minutes every day with your assistance and praise. Or, it could be that dressing himself is something you really want to see your child master, so you may focus on one aspect of that task at a time (such as putting on socks, or pants), and gradually adding on other aspects of dressing as each small part is mastered.

Whatever the goal, break it down into smaller chunks, so that each week you can celebrate progress. A sticker chart can work wonders to help your little one see how far he has come. Just be sure to be consistent and celebrate each step as he inches closer to his goal. You can never do too many happy dances!

So, go easy on yourself and your little one as you glide into 2015. I wish you and your family many happy moments, continued progress and much success.

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 a Table of Contents of prior posts.

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