Posts Tagged ‘birth defects’

Don’t delay with delays

Wednesday, April 2nd, 2014

learning to walkEvery 4 ½ minutes a baby is born with a birth defect. Many other babies experience delays or disabilities as they grow up. In fact, “as many as one in four children through the age of five are at risk for a developmental delay or disability,” according to the U.S. Dept. of Health and Human Services.  The sooner a child is identified as having a condition that requires treatment, the sooner he may start receiving appropriate interventions and begin improving.  This sounds logical, right? Yet, many children with developmental challenges somehow don’t receive the help they need until much later.

When my daughter’s speech delay was evident, I asked her pediatrician “Should we wait a year and see if she grows out of it?” Thankfully, he said “Why would you wait?” His attitude was that if we started right away, there would be a chance that this small problem would not become a bigger problem later.  He was right.

If your child has a broken leg, would you wait to have it set? Of course not. If you did not intervene with the cast and crutches, your child would continue to suffer and perhaps get worse. The same is true with other types of disabilities or delays – early treatment is essential for improvement.

Good news: more help is here

The Birth to 5: Watch Me Thrive!  initiative was launched last week. It is a federal effort to encourage developmental and behavioral screening and support for children, families, and the providers who care for them. Yes, screening and intervention processes have been in place for years in the U.S. However, this initiative features a toolkit with an array of “research-based screening tools” to help pediatricians, parents, social workers, case workers, early care and education providers find help at the local level. The toolkit has resources to raise awareness about healthy development, recommended screening and follow-up practices. The Families page has info on developmental milestones, how to find services in your local area, tips and resources on positive parenting, and other helpful topics.

This initiative comes on the heels of the newly announced increase in Autism Spectrum Disorder (ASD) rates. Last week, the Centers for Disease Control and Prevention (CDC) released data that indicate ASD rates have risen to 1 in 68 children aged 8 years (which is up from 1 in 88). The CDC says that most children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2.

What’s a solution?

Early diagnosis and early treatment.

As parents, you know your child best. If you have a suspicion that something is not right, don’t wait. Speak up and tell your child’s pediatrician. Learn about developmental milestones and see if your child is on track. If not, say something.

The Early Intervention program in the U.S. is here for babies and toddlers up to their third birthday. The Special Education program takes over for children ages 3 and older. The key is getting babies, toddlers and children identified as early as possible, and starting intervention. Find your local program for children up to their third birthday and request that your baby/child be screened for developmental delays or disabilities without a referral from a provider. And it is free to you. If your child is age 3 or older, request a screening from your child’s school.

Throughout my daughter’s childhood, I heard “Don’t wait” so many times – from doctors and specialists to special educators and therapists. As a result, we jumped on the therapy/intervention path right away, as each issue surfaced, and tackled each problem one by one (or often two by two). I am glad that I had the influence of professionals to prod and guide me along the way. The efforts certainly paid off for my child.

Bottom line

If you need to get help for your child, you now have more than enough resources to get going. The Birth to 5: Watch Me Thrive! initiative is there to set young children off on the right foot, and the Special Education program is there to continue to help kids up to age 21.  Hopefully, your child’s first steps will soon become leaps as you see him thrive. So, don’t delay with delays.

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. Go to News Moms Need and click on “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). As always, we welcome your comments and input – send them to AskUs@marchofdimes.com.

Nacersano.org, our Spanish-language site

Monday, March 31st, 2014

nacersano homepage

Hispanic women have babies at a greater rate each year than any other racial or ethnic group in the United States, making this population the fastest growing group. And now, Spanish-speaking women and families can easily find much-needed information on how to have a healthy pregnancy and a healthy baby online at nacersano.org.

Nacersano.org, the March of Dimes Spanish-language site, offers valuable information on the specific health needs of the Hispanic community, including on the importance of folic acid, a B vitamin that helps prevent serious birth defects of the brain and spine known as neural tube defects (NTDs).

Babies born to Hispanic women are about 20 percent more likely to have a neural tube defect than non-Hispanic white women. While this disparity is not well understood, one reason may be that Hispanic women have a lower intake of folic acid. In the United States, wheat flour is fortified with folic acid, but corn masa flour is not.

The March of Dimes, through its educational print and online initiatives, is working to raise awareness about the need for folic acid among Hispanic women. All women of childbearing age, whether or not they’re planning to get pregnant, should take a multivitamin with 400 micrograms of folic acid every day, beginning before pregnancy and continuing into the early months of pregnancy. This is the best way to get the recommended amount of folic acid to prevent NTDs. Eating foods rich in folate (the natural form of folic acid) or fortified with folic acid is another way to consume this essential vitamin.

Visitors to nacersano.org can find dozens of recipes from various Latin America cultures that provide at least 10 percent of the recommended daily amount of folic acid. Users can also submit their own folic acid rich recipes to the site.

“It’s such an easy thing to make folic acid a part of your daily routine, and it can provide a major benefit to your future family,” says José F. Cordero, MD, MPH, dean of the School of Public Health University of Puerto Rico and a member of the March of Dimes national Board of Trustees. “About half of pregnancies are unplanned, so women should take folic acid daily to give your babies the healthiest start in life.”

Nacersano.org also features hundreds of health articles, ovulation and due date calculators, and educational videos to help Hispanic women and families be healthy before, during and after pregnancy.

Visitors can also ask questions about folic acid and nutrition, preconception, pregnancy and baby health. March of Dimes health experts provide personalized answers by email within 48 hours in Spanish and English. Visitors can also sign up to receive monthly free newsletters on preconception and pregnancy health, read and comment on the blog, and stay connected through various social media channels.

So, if you’re more comfortable with the Spanish language, “like” us on Facebook.com/nacersano and follow us on @nacersano and @nacersanobaby on Twitter.

Watchdog group honors March of Dimes

Friday, February 28th, 2014

We are thrilled to announce that the March of Dimes is being honored as a top charity by Philanthropedia, a division of GuideStar. Philanthropedia is a web-based nonprofit group that rates charities according to their financial responsibility and outstanding work, helping donors to give wisely. Philanthropedia’s panel of 74 experts identified the March of Dimes as 1 of 16 high-impact nonprofits working in the field of people with disabilities, and named it second in that category.

“We are pleased and humbled to be cited by Philanthropedia experts as a top nonprofit in our field,” says Dr. Jennifer L. Howse, president of the March of Dimes.

Starting in 1955 with a signature victory to eliminate polio in the United States, the March of Dimes has led many successful public health campaigns that improved infant health, including:

• Reducing serious birth defects of the brain and spine by 26 percent through folic acid fortification of the nation’s grain foods in the late 1990s;

• Bringing mandatory newborn screening programs to every state to ensure that each baby is tested for more than 30 conditions that, if undetected and untreated, can lead to serious disability or death;

• Launching a nationwide prematurity prevention campaign. The March of Dimes recently announced that the U.S. preterm birth rate dropped for the sixth consecutive year in 2012 to 11.5 percent, a 15-year low.

In addition to this new honor, the March of Dimes is a Better Business Bureau Accredited Charity and meets all 20 standards listed on the BBB Wise Giving Alliance Web site Give.org.

“We are very proud of our fiscal stewardship,” added Dr. Howse. “We receive financial support from more than 3 million volunteers, thousands of corporate sponsors, and state and federal agencies. With this support, we fund the innovative research, education, and community programs that are designed to deliver results and bring us closer to that day when every baby in every community is born healthy.”

Early Intervention

Wednesday, January 22nd, 2014
Pablo

Pablo

January is National Birth Defects Prevention Month. The CDC wants you to know that it is important to remember that babies with birth defects who survive their first year of life can have lifelong challenges, such as problems with infections, physical movement, learning, and speech. Early intervention services are vital to improving outcomes for these babies.

Pablo was born with cleft lip and cleft palate. Pablo’s mother, Belen, tells of all the services he’s needed, saying, “Many people believe that kids like Pablo only need plastic surgeries to be okay. Depending on the severity of the cleft, these kids see other specialists too. In Pablo’s case, we started with an occupational therapist and a speech therapist (who he still sees weekly).  We also meet with a speech pathologist regularly as well as an ear, nose, and throat doctor, a dentist, an orthodontist, and a plastic surgeon.” Despite everything Pablo has been through, Belen says, “I know that one day he will be a wonderful role model for other kids with cleft lip and palate. And I love watching him grow and foreseeing the man he will become.”

Ian

Ian

Ian was born with a condition called gastroschisis, a birth defect where his intestines stick outside of his body through an opening beside the belly button. He had a number of problems as a result of his condition and had to spend a lot of time in the hospital undergoing many different procedures. His mom, Jessica, describes his continued needs, saying, “Ian receives special services for speech and development because of his long term hospitalizations.” Early intervention can really help these children thrive. Jessica says of her son, “He loves school, his dance club, and his friends. Despite everything he has been through, he continues to endure with a smile—he is a true Warrior!”

Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services include therapy to help the child talk, walk, and interact with others. No single treatment or intervention is the answer for every child or family. Good intervention plans will include close monitoring, follow-ups and any changes needed along the way. It is important to talk to your child’s doctor as soon as possible if you think your child needs help. Even if your child has not been diagnosed with a specific condition, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation. While early intervention is extremely important, intervention at any age can be helpful.
Learn more about early intervention

Written By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Have questions? Send them to AskUs@marchofdimes.com

Smoking causes birth defects

Tuesday, January 21st, 2014

stop-smokingTo dispel any uncertainty about the serious harm caused to babies and pregnant women by smoking, the first-ever comprehensive systematic review of all studies over the past 50 years has established clearly that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (for example, of the eyes and cleft lip/palate).  

Smoking during pregnancy is also a risk factor for premature birth, says Dr. Michael Katz, senior Vice President for Research and Global Programs of the March of Dimes. He says the March of Dimes urges all women planning a pregnancy or who are pregnant to quit smoking now to reduce their chance of having a baby born prematurely or with a serious birth defect. Babies who survive being born prematurely and at low birthweight are at risk of other serious health problems, Dr. Katz notes, including lifelong disabilities such as cerebral palsy, intellectual disabilities and learning problems. Smoking also can make it harder to get pregnant, and increases the risk of stillbirth.

About 20 percent of women in the United States reported smoking in 2009. Around the world, about 250 million women use tobacco every day and this number is increasing rapidly, according to data presented at the 2009 14th World Conference on Tobacco or Health in Mumbai.

The new study, “Maternal smoking in pregnancy and birth defects: a systematic review based on 173,687 malformed cases and 11.7 million controls,” by a team led by Allan Hackshaw, Cancer Research UK & UCL Cancer Trials Centre, University College London, was published online January 17th in Human Reproduction Update from the European Society of Human Reproduction and Embryology.  

When women smoke during pregnancy, the unborn baby is exposed to dangerous chemicals like nicotine, carbon monoxide and tar, Dr. Katz says. These chemicals can deprive the baby of oxygen needed for healthy growth and development.

During pregnancy, smoking can cause problems for a woman’s own health, including:

  • Ectopic pregnancy

  • Vaginal bleeding

  • Placental abruption, in which the placenta peels away, partially or almost completely, from the uterine wall before delivery

  • Placenta previa, a low-lying placenta that covers part or all of the opening of the uterus

Smoking is also known to cause cancer, heart disease, stroke, gum disease and eye diseases that can lead to blindness. If you are pregnant or thinking about becoming pregnant, there has never been a better time to quit.

You can read the Surgeon General’s report: The Health Consequences of Smoking – 50 Years of Progress at this link.

Smoking – a risk for preterm birth

Thursday, December 5th, 2013

cigarette-buttsWe’ve all read the articles, seen the ads, maybe even known someone who has had lung cancer. But many pregnant women still smoke. Did you know that smoking nearly doubles a woman’s risk of having a premature baby? We need everyone’s efforts to help women quit.

Not only is smoking harmful to Mom, it’s also harmful to your baby during pregnancy. When you smoke during pregnancy, your baby is exposed to dangerous chemicals like nicotine, carbon monoxide and tar. These chemicals can lessen the amount of oxygen that your baby gets and oxygen is very important for helping your baby grow healthy. Smoking can also damage your baby’s lungs.

Babies born to women who smoke during pregnancy are more likely to be born prematurely, with birth defects such as cleft lip or palate, and at low birthweight. Babies born prematurely and at low birthweight are at risk of other serious health problems, including lifelong disabilities (such as cerebral palsy, intellectual disabilities and learning problems), and in some cases, death.

Secondhand and thirdhand smoke are proven to be bad for babies’ health. All the more reason for both Moms and Dads to try to quit. With counseling and social support, smoking cessation programs have yielded a significant reduction in preterm birth.

Know someone who is trying to quit? Lend ‘em a hand. Want help quitting? Try http://smokefree.gov/.

Shopping for toys for kids with special needs

Wednesday, November 20th, 2013

giftsWith the holiday season fast approaching, shopping for gifts for kids is upon us. When you have a child with special needs, relatives and friends may not know the kind of gift they should get for him. The toys that a typically developing child would be able to handle or enjoy may not be the same for a developmentally challenged child. Yet, kids with challenges enjoy playing with toys just as much as their typically developing peers.  What can you do?

Toys for developmentally delayed children

There are companies that offer product lines that cater specifically to kids with special needs.  Toys may not be labeled with age ranges because a child with delays may enjoy a toy that is originally targeted for a younger child. If a company does label toys with age ranges, pick out a toy with an age range that corresponds to your child’s developmental age or adjusted age (if he is a preemie), not his chronological age. You have to remember that you need to look at your child as he is right now, and pick out a toy that suits his particular interests and abilities at this point in time. You don’t want your child feeling frustrated by not being able to play with a toy. Toys are meant to bring happiness, not frustration.

Companies may group toys by categories, such as toys that provide sensory stimulation, or those that are geared for kids with fine or gross motor issues, speech delays, etc.  With a little online searching, you are bound to come up with lots of appropriate choices for your little one.

Shopping for the holidays…NOT!

Tis the season for shopping, but taking your child to the mall or busy stores may prove to be more tension building than it is worth. This is the time when catalogs and online shopping can be a lifesaver. When your tot is napping, with Daddy, or after he has gone to sleep, whip out the laptop or catalogs and let your fingers do the shopping.  You can shop from the comfort of your home with your fuzzy slippers on.  If you shop early enough, many companies offer free shipping. Sparing your child the intensity of hours at the mall could be the best gift you give to him AND to you!

Of course, there will be times when you want to take him to the mall, for holiday photos or just to witness the festivities. But, try to keep the visits short, so that your child does not get overloaded. You know your child best – you know the warning signs of when a fuse is about to blow. Heed the warnings early on, so that your fun does not end up becoming a fiasco.

Keep it to a low roar

The holidays are a time when a child can easily feel overwhelmed. Too many new toys and new items at one time can put your little one on stimulation overload. Even just the noise and activity of wrapping paper being ripped off and strewn about can create tension. Try to keep the excitement to a low roar so that your little one can absorb and enjoy the festivities without unnecessary stress.

Bottom line

With a little planning and extra vigilance, you can not only get through the holidays – you and your child can enjoy them!

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January and appears every Wednesday. Archived blog posts can be found on News Moms Need under “Help for your child.” As always, we welcome your comments and input.

Have questions?  Send them to AskUs@marchofdimes.com.

What is peer-reviewed research?

Wednesday, November 6th, 2013

teacher-and-childYou may have heard that your child’s program should be based on “peer reviewed research.”  But, what does that mean?

Peer-reviewed research is when research is reviewed by respected colleagues in a specific field (their “peers”), before it is considered acceptable to publish. If the method or research has been peer-reviewed and was published, then it is much more likely to be of high quality and reliable. The process of going through peer-review lends validation to published work – it makes it more believable and credible. It is considered solid and effective.

How can peer-reviewed research help your child?

If you use a therapy that has already been tried, tested, and proven successful, it is more likely to help your child. By using peer-reviewed research as the basis for your child’s therapy or intervention, it increases the chances that your child will improve. For example, if your child has a specific diagnosis of dyslexia, using a reading program proven to help children with dyslexia would be appropriate for your child. Why use another program if one exists that is validated through peer-reviewed research? In other words, why spend time using an untested instructional method when a tried and true method is available? It just makes sense. It also is the law.

Do peer-reviewed methods always HAVE to be used? What does the law say?

If you have a baby, toddler or child with a delay or disability, IDEA (the law that governs early intervention and special education services) says that the services your child receives should be based on peer-reviewed research whenever possible. In fact, the language used in the law is “to the extent practicable.” This will ensure that your child receives a method of service or therapy that is appropriate for her. Of course, there will be times when it is not practicable to use a particular method, for various reasons, but if it is possible, it should be used. Here is what the law actually says…

     • For infants up to age 3, IDEA says: “The individualized family service plan (IFSP) shall be in writing and contain a statement of specific early intervention services based on peer-reviewed research, to the extent practicable, necessary to meet the unique needs of the infant or toddler and the family, including the frequency, intensity, and method of delivering services.”

     • For children ages 3 – 21, IDEA says: “A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child.”  

Peer-reviewed research is a win-win for the child, parents and schools

Wrightslaw has a discussion on why peer-reviewed research is a win-win for both child and school system. They say that in 2004, when IDEA was re-authorized, “Congress clarified that IEPs must include research-based methodology. Including methodology in the child’s IEP will benefit the child’s parents and teachers. As participants in developing their child’s IEP, parents will benefit by having input into the instructional methods used to teach their children. The teachers who implement the IEP will benefit by having guidance from a team of professionals who are familiar with the child and who have reviewed the research to determine the interventions and instructional methods that are most likely to provide the child with educational benefit…This is a win, win situation for all – especially for children who will benefit when they receive effective instruction from teachers who are trained in research-based instructional methods.”

Bottom line

Before you and your IFSP or IEP team decide on the services that your child will receive, (parents are equal partners of the team), see if it is possible to use an instructional method based on peer-reviewed research. Hopefully, the method will be appropriate and meet your child’s unique needs.

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. Go to News Moms Need and click on “Help for your child” in the Categories menu on the right side, to view all of the blog posts to date. As always, we welcome your comments and input.

Have questions?  Send them to AskUs@marchofdimes.com.

Caring for the siblings of a child with special needs

Wednesday, August 21st, 2013

Parenting a child with delays or disabilities has its challenges, and so does parenting his siblings.

My post last week revealed research that indicates that the brothers and sisters of a child with disabilities may have unique issues and stressors. It’s not easy growing up with a sibling that needs so much attention. Parents try to do their best – but octopusoften end up feeling like an octopus without enough tentacles. Not to mention the stress of holding the rest of your life together (job, food shopping, errands, housework, cooking, laundry, etc., etc.).  Making sure the sibs of your special needs child are doing ok may not be at the top of your to-do list. I get it. Whether your special needs child is a baby, toddler or older, here are some tips so that your “typical kids” don’t fall through the cracks.

One of my favorite websites is NICHCY.org. NICHCY has all sorts of great info on sibling care. Included are topics such as “What Siblings Would Like Parents and Service Providers to Know” and “What About Me? – Support for the Siblings of Disabled Children.” They also offer info on sibling support groups which might be helpful.

NICHCY recommends talking with your typical children about disability – “it is important for you to take time to talk openly about your child’s disability with your other children, explaining it as best you can in terms that are appropriate to each child’s developmental level.” 

Here are tips that worked for me and some parents I know:

     • Tag teaming – try to find a friend or relative that can take care of your child with a disability so that you can spend some time with your other children. You then do the same for your friend’s children. 

     • Snippets of time – you may not need to spend 3 hours of 1:1 time with your non-disabled child if you just spent 3 hours with your child with a disability. Often just 20 minutes of uninterrupted 1:1 time is enough for your little one to keep him feeling included. Try to grab snippets of time whenever you can.

But don’t forget about you

In another post in this series, I gave tips on how to care for YOU – the parents. See Caring for the caretaker – put on your oxygen mask. You’ll learn tips on how to keep yourself in check so that you can do the best job in your role as parent, spouse, childcare coordinator, project manager, file keeper, advocate, chauffeur, cook, cleaner, worker, and giver and receiver of hugs and kisses from your little ones!

Remember, you need to take care of YOU to take care of them.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and suggestions for future topics.

Have questions? Send them to AskUs@marchofdimes.com.

International focus on children with disabilities

Wednesday, June 12th, 2013

unicef-report-photo1My Wednesday blog post series focuses on Delays and disabilities – how to get help for your child. But today I want to digress slightly and take a moment to go global. Why? Because this year, UNICEF’s State of the World’s Children 2013 report focuses on Children with Disabilities. 

It is very hard to estimate how many children around the world have disabilities. One rough statistic estimates that 93 million children, or 1 in 20 children age 14 or younger, live with a moderate to severe disability of some kind. These numbers are staggering. For every child with a disability, there is a family and community that are also affected. The ramifications of a disability can be long lasting and often devastating. This is the sad news.

The better news is that this year, UNICEF’s recent report examines how children with disabilities are faring around the globe and offers recommendations to help improve their lives.

What are some of the problems?

In many countries, children with disabilities do not have the same rights and opportunities as children who are not disabled, nor do they receive the same level of education and health care as non-disabled children. Many children with disabilities are often abused or neglected. A lack of understanding and resources contributes to the institutionalization of many children who would be better off remaining with their families and receiving care within their communities. This video of the experiences of Cara, a UNICEF worker in Haiti, shows the serious situation of many children with disabilities.

Especially important is the need for children with disabilities to be educated alongside children without disabilities, so that they may reach their full potential. By including children with disabilities in school with children who are not disabled, they are given opportunities that are critical for their success to become the best that they can be.

What is being done?

UNICEF reports that through an international commitment to build more inclusive societies, children with disabilities will have the same access to services, support and opportunities as their non-disabled peers. In order for these changes to occur, it is necessary to first enhance awareness of disability among the general public. Then, barriers to school, health facilities, public transportation, and other obstacles can be removed.

The report emphasizes the importance of including the children themselves, as well as their families, in assessing their special needs, so that their communities can best learn how to support them. Along these lines is the effort to reduce or end institutionalization of children with disabilities by promoting family-based care and “community-based rehabilitation.”

What does the future hold?

As Cara clearly demonstrates in the video mentioned above, individuals with disabilities may also possess great strengths and abilities. In the right environment, a child with special needs may flourish. This report encourages global conversations about the state of children with special needs, around the world. To quote the UNICEF report, “the future is far from grim.”

Have questions? Send them to AskUs@marchofdimes.com.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

Photo credit: © UNICEF/NYHQ2007-0745/Noorani