News Moms Need

April is Autism Awareness month. Did you know that the March of Dimes funds Autism research? In fact, in the past 10 years we have funded 55 grants totaling over $10.8 million. It is our hope that one day the answers we find will make further research unnecessary.

This month, many organizations are helping to spread the word about this serious disorder and the impact that it has on an entire family. And, at the same time, they are helping these families have a great time together. Here are two exciting initiatives that I want to share with you. Both welcome the kids and families affected by Autism in a very positive and FUN way!

The first is Major League Baseball’s decision to have all 30 of their Clubs raise awareness for the disorder during one home game in April, or on another date during the regular season. Many of the MLB Autism Awareness games throughout the league will provide special opportunities and a safe, friendly environment for families and individuals affected by autism.  All too often, kids with Autism (and their families) miss out on doing fun stuff like going to a baseball game. On these designated days, MLB teams up with Autism Speaks or other local autism charities to offer special events. Kids with Autism will have special opportunities to participate and enjoy the game.
 
For more information about MLB Autism Awareness and to check on your favorite team’s Autism Awareness dates, please visit MLBCommunity.org.

The second initiative involves AMC Loews and the Autism Society. They have teamed up to present sensory friendly films to families with children with Autism. Often, kids with Autism are particularly sensitive to sounds and can’t sit through a movie due to the volume of the soundtrack. In addition, kids with Autism are often sensitive to light and many can’t munch on typical movie theater snacks due to special dietary restrictions. So, on designated dates, the movie theater will brighten the theater and turn down the sound, eliminate ads and previews, and allow families to bring in their own snacks. Kids can even dance in the aisles if they want to! As AMC says, their “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.” Sounds like a gift to parents as well as to any child with a sound or light sensitivity - a win-win for all.

To find a participating AMC Theatre near you, click here.

So, how great is this…?!  I recommend you get the family out and enjoy these special events and help raise awareness at the same time.

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Rare diseases include many birth defects, genetic disorders and chromosomal abnormalities.
 
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

To learn more about rare diseases and Rare Disease Day, click on this link.

Taking a folic acid supplement daily, one month before becoming pregnant and throughout the first trimester, is one of the easiest and most effective steps women can take to prevent birth defects.  This simple step, taking 400 micrograms of folic acid daily, can reduce the chance of having a neural tube defect by 50-70%.

Last week, additional good news about the benefits of folic acid were announced in a study from Norway that was published in the Journal of the American Medical Association (JAMA).  In the study, pregnant women filled out a questionnaire reporting their use of folic acid from 4 weeks before to 8 weeks after the start of pregnancy.   Over 85,000 babies born to these women between 2002-2008 were followed for an average of 6 years.  Over the course of the study, 270 children were diagnosed with an autism spectrum disorder (ASD):  114 had autistic disorder, 56 had Asperger syndrome, and 100 had pervasive developemental delay – not otherwise specified (PDD-NOS).   The study found that children whose mothers reported taking folic acid were almost 40% less likely be diagnosed with autistic disorder than those whose mothers did not take it.

This is good news for women who want to do everything they can to prevent autism.  Autism is a complex neurodevelopmental condition with impaired social interaction and communication.  More research is needed to better understand its cause(s), which likely have both genetic and environmental contributions.  But in the meantime, preventing autism is yet another benefit to taking folic acid. 

Read more and see our video on folic acid at this link.

Today’s guest post is from Dr. Siobhan Dolan, Associate Professor in the Department of Obstetrics & Gynecology and Women’s Health at the Albert Einstein College of Medicine and an attending physician in the Division of Reproductive Genetics at Montefiore Medical Center, the University Hospital for Einstein, in New York City. She is co-author of the new March of Dimes pregnancy book, Healthy Mom, Healthy Baby.

Amniotic band syndrome is a well-know condition that can include a variety of different birth defects, usually affecting an arm or leg, fingers or toes. No two cases are alike – some are just a single malformation while others can include many disfiguring complications.

The upper body is involved more often than the legs or toes. (If you’re watching the current season of “The Bachelor” on TV, one of the women on the show is missing the lower part of an arm due to amniotic band syndrome.) Sometimes fingers or the lower portion of an arm are smaller than normal, sometimes they are missing all together, or occasionally some fingers may be webbed together. Sometimes a limb may have a deep groove around it showing where a tight band constricted growth.

In other cases, aside from defects of the arms or legs, a baby may also have facial defects (cleft lip or palate), a neural tube defect of the brain or spine, or have portions of internal organs protruding through a hole in the abdominal or chest wall.

The causes of amniotic band syndrome are yet unknown, but there are two main theories. One is that strands of tissue from the inside of the amniotic sac surrounding the developing baby separate from the lining and form bands that float free and entangle parts of the baby. If they wrap too tightly, they can restrict movement, blood flow and proper development, possibly even amputation. This may be due to random chance or trauma to the abdominal area and placenta during pregnancy.

Another theory holds that the cause stems from within the baby itself and involves insufficient blood flow to specific parts of the body. If an area of the body does not receive enough blood, tissues in that area die which can lead to physical defects. Some researchers believe that genetic factors may be involved in these cases. But whether this is caused from within the developing baby or from outside influences, occurrence is random and the chance of having another child with amniotic band syndrome is extremely low.

Treatment really depends on the severity of the defects. Surgery may be recommended to repair defects such as cleft lip or palate, clubfoot, or abdominal wall defects, etc. Sometimes physical or occupational therapies are needed to ensure the child has the best range of motion and use of the affected limb as possible.

Anifa is an 18-month-old girl who was born with spina bifida, a serious birth defect of the spine. Like many children with spina bifida, Anifa is paralyzed and has no bowel or bladder control. She lives with her family in a village in Nigeria where there is no primary health center to help her. As a result, Anifa could not have surgery to close the opening in her spine until she was nine months old. During this time, her spinal cord was exposed and without protection. In the U.S., the first surgery for a baby born with spina bifida usually takes place within the first 24 hours of life to avoid complications or death. But Anifa had no choice but to wait.

In the United States, children born with spina bifida often live long and productive lives, even though they face many challenges. In many other countries, however, the outlook for children like Anifa is not as positive.

The Centers for Disease Control and Prevention (CDC) first began researching folic acid’s role in preventing birth defects in the early 1980s. Early studies found the risk for having a baby with a neural tube defect (NTD), such as spina bifida, was reduced if the mother had taken folic acid before and during early pregnancy. As a result, U.S. Public Health Service released the 1992 recommendation that all women who could become pregnant should get 400 micrograms (mcg) of folic acid every day.

Women can get folic acid in three ways: diet, vitamin supplements, and flour fortification. Experts agreed that getting 400 mcg of folic acid from naturally-occurring food sources alone was impractical—women would have to eat a lot of folate-rich foods which are expensive and not readily available in many communities.

In January 1998, in response to requests from the CDC and its collaborators, including the March of Dimes, the FDA mandated fortification of cereal grain products labeled as enriched in the United States. “At that point, we had what we thought was the best possible coverage of women of child-bearing age to get folic acid for the prevention of neural tube defects,” says former CDC scientist Joe Mulinare. With a 36 percent reduction in the rates of neural tube defects by the end of 2006, folic acid fortification was recently named one of the Ten Great Public Health Achievements in the United States.

Folic Acid Awareness Week is January 6-12th, 2013. We are honored to have this guest post from the CDC. Author: Christina Kilgo, MA, Health Communication Specialist and SciMetrika contractor for CDC’s National Center on Birth Defects and Developmental Disabilities.

Today’s guest post is written by Ridgely Fisk Green, PhD, MMSc. Dr. Fisk Green is Carter Consulting contractor at CDC’s National Center on Birth Defects and Developmental Disabilities. Dr. Fisk Green works on improving children’s health through better use of family health history information.

Today, when you end up sitting next to Aunt Irma who likes to talk about everyone’s health problems, don’t tune her out! Take the opportunity to learn more about your family’s health history.

Thanksgiving is a wonderful time to enjoy delicious food and get together with family. You share more than just special occasions with your family—you share genes, behaviors, culture, and environment. Family health history accounts for all of these. Your mother’s genes may have contributed to her type 2 diabetes and you may share some of those genes, but the fact that she never exercises and eats fast food every day also influences her health, and you might share some of those habits, as well.

Family health history information can also be important for keeping your child healthy. Family health history can help your child’s doctor make a diagnosis if your child shows signs of a disorder. It can show whether your child has an increased risk for a disease. If so, the doctor might suggest screening tests. Many genetic disorders first become obvious in childhood, and knowing about a history of a genetic condition can help find and treat the condition early.

Family health history is also very important if you’re pregnant or thinking of having a baby. Remember to collect family health history information from the baby’s father, too. Family health history can tell if you have a higher risk of having a child with a birth defect or genetic disorder, like sickle cell disease. Talk to your doctor if you have any concerns about your family health history or the father’s family health history.

Tips for Collecting Family Health History for Your Child

•Record the names of your child’s close relatives from both sides of the family: parents, siblings, grandparents, aunts, uncles, nieces, and nephews. For genetic conditions such as cystic fibrosis and sickle cell disease, include more distant relatives. Include conditions each relative has or had and at what age the conditions were first diagnosed.
•Use the US Surgeon General’s online tool for collecting family health histories, called “My Family Health Portrait.”
•Discuss family health history concerns with your child’s doctor. If you’re pregnant or planning to get pregnant, share family health history information with your doctor.
•Update your child’s family health history regularly and share new information with your child’s doctor.
•The best way to learn about your family health history is to ask questions. Talk at family gatherings and record your family’s health information—it could make a difference in your child’s life.

Click on this link to learn about family health history from the CDC.

So why do women still smoke? Smoking at some point during pregnancy varies widely, from 10% in Canada to 23% in the U.S. and 30% in Spain, according to the March of Dimes 2012 Premature Birth Report Card. Those are huge numbers, which may reflect how hard it is to quit. And since 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 quit. With counseling and social support, smoking cessation programs have yielded a significant reduction in preterm birth.

Want help quitting? Try http://smokefree.gov/.

Today I met a preemie who was an inspiration.

I went to my physical therapy session to treat an injured shoulder, and a new PT aide greeted me with a huge smile and got me settled into my usual routine. Her name is Danielle, or “Dani” and since we were both new to one another, we started chatting. Somehow I started talking about the March of Dimes, (big surprise) and she told me that she had been born prematurely,– only 3 lbs. 2 ounces - at 32 weeks, and her twin, sadly, did not make it.

As I pedaled away on the arm ergometer, she told me about all of the medical problems she had at birth – a congenital heart defect (patent ductus arteriosus or PDA which required a metal closure to be surgically implanted, ) a murmur, a perforated rectum, and other complications. There were more surgeries than she could remember, not to mention having had a colostomy. Her preemie problems extended in to her childhood as she had several other surgeries. Numerous therapies followed the surgeries, especially OT and PT. In high school, she set a goal to be healthy and back on her feet in time for her prom, and she was successful!

There was something about this young lady, however, that made me almost think she couldn’t be right. Was she kidding me? As she ran around the room taking care of physical therapy patients, her spritely walk and engaging personality did not reveal that this fighter had had such a difficult start. Quite the opposite.

Danielle defied many of the predictions that doctors had made in those early days (25 years ago). She credits her mother for letting her live a normal life despite her fears of Dani hurting herself or facing serious problems from being so active. And active she was! Dani started gymnastics at the age of 2 and continued all through childhood and into high school. She played basketball and ran high school Varsity track in 7th grade competing against kids much older. She still loves to be active. In fact, she said she occasionally walks on her hands in the PT room, just for fun!

It was Dani’s post surgery physical therapy that inspired her to go into the field. She earned a bachelors degree in biology and is on schedule to graduate from a physical therapy assistant program in the spring of 2013. But why stop there? This preemie fighter is continuing to push the limits – she is waiting to hear if she has been accepted to a doctoral program in physical therapy, because she doesn’t feel she has fulfilled her true potential yet (nothing like an underachiever…right?). Dani is looking forward to specializing in cardiac rehab with children, especially preemies, where she feels she can make a difference. I bet she will. Danielle says her motto is “anything is possible. The word impossible contains the word possible.” She definitely practices what she preaches.

I was happy to discover that both Dani and her mother had participated in March of Dimes activities throughout the years. I am honored that she did. I’d like to think that many of the March of Dimes’ researchers and discoveries helped Dani to become the incredible young lady she is today. If so, it makes me smile. But, perhaps more importantly, it is Dani who is an inspiration to anyone who meets her, especially if you are a preemie or a person with a disability.

So, for all of you parents out there who feel that having a preemie (especially one with medical challenges) is all doom and gloom, you had best think about Danielle. Don’t underestimate your little one’s future – you never know what she will do or achieve!

September 9 is International Fetal Alcohol Spectrum Disorders (FASDs) Awareness Day. Drinking alcohol during pregnancy can cause FASDs, which include a wide range of physical and mental disabilities and lasting emotional and behavioral problems in a child.

When you drink alcohol during pregnancy, so does your baby. The same amount of alcohol that is in your blood is also in your baby’s blood. The alcohol in your blood quickly passes through the placenta and to your baby through the umbilical cord.

Although your body is able to manage alcohol in your blood, your baby’s little body isn’t. Your liver works hard to break down the alcohol in your blood. But your baby’s liver is too small to do the same and alcohol can hurt your baby’s development. That’s why alcohol is much more harmful to your baby than to you during pregnancy. No amount of alcohol (one glass of wine, a beer…) is proven safe to drink during pregnancy.

Alcohol can lead your baby to have serious health conditions, FASDs. The most serious of these is fetal alcohol syndrome (FAS). Fetal alcohol syndrome can seriously harm your baby’s development, both mentally and physically.  Alcohol can also cause your baby to:
• Have birth defects (heart, brain and other organs)
• Vision or hearing problems 
• Be born too soon (preterm) 
• Be born at low birthweight
• Have learning disabilities (including intellectual disabilities)
• Have sleeping and sucking problems
• Have speech and language delays
• Have behavioral problems

In order to continue raising awareness about alcohol use during pregnancy and FASDs, the CDC has posted a feature telling one woman’s story and her challenges with her son who has FASD. It’s an eye opener. The CDC’s FASD website has lots more information, too.

Topiramate is a medication used to treat epilepsy. But it’s also considered for treatment of sleep and eating disorders, other psychiatric conditions, and weight loss. Topiramate is also a component of Qsymia, a medicine which was approved by the Food and Drug Administration (FDA) on 7/17/2012 for chronic weight management.

Topiramate is currently considered a Category D medication by the FDA.  This means that potential risks of using the medicine during pregnancy have been recognized, but benefits of the medicine (example: controlling epilepsy) may warrant use despite the risks. 

A new study looked at the risk of oral clefts (cleft lip and cleft palate) in infants whose mothers took topiramate during the first trimester of pregnancy.  It used data from two large birth defects case-control studies. Both studies showed an increased risk of oral clefts in infants exposed to topiramate during the first trimester compared to infants not exposed to antiepileptic medicines.

Previous studies have shown a potential association between oral clefts and the use of topiramate during pregnancy. However, this association has been hard to evaluate because both the use of topiramate during pregnancy and the occurrence of oral clefts are rare.
 
This new study supports previous findings showing an increased risk of oral clefts among infants exposed to topiramate. Assuming this study is correct, this means that for any pregnancy exposed to topiramate, the risk of oral clefts in the offspring would be increased 5-fold. This shouldn’t make anyone panic, however, because oral clefts are a rare occurrence. It is important to keep the absolute risks in mind. Approximately 1 in 1,000 infants is born with cleft lip/palate in the US each year, and for any topiramate-exposed pregnancy, the risk would increase to approximately 5 in 1,000 infants.

If you have questions about the safety of any medications during pregnancy, speak with your health care provider, check out this CDC website or contact the Organization of Teratology Information Specialists.