Family Team News

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Monday, January 27, 2014

Early Intervention

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 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

Wednesday, January 22, 2014

Birth defects

In recognition of National Birth Defects Prevention Month, here are 10 things you need to know about birth defects from the Centers for Disease Control and Prevention, CDC.

1. Birth defects are common.
Birth defects affect 1 in 33 babies in the United States every year. For many babies born with a birth defect, there is no family history of the condition.


2. Birth defects are costly and can greatly affect the finances not only of the families involved, but of everyone.
In the United States, birth defects have accounted for over 139,000 hospital stays during a single year, resulting in $2.6 billion in hospital costs. Families and the government share the burden of these costs. Additional costs due to lost wages or occupational limitations can affect families as well.

3. Birth defects are critical conditions.
Birth defects can be very serious, even life-threatening.  About 1 in every 5 deaths of babies before their first birthday is caused by birth defects in the United States. 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.

4. Women should take folic acid during their teens and throughout their lives to help prevent birth defects.
Because half of all pregnancies in the United States are not planned, all women who can become pregnant should get 400 micrograms of folic acid every day, either by taking a vitamin each day or eating a healthy diet. Folic acid helps a baby’s brain and spine develop very early in the first month of pregnancy when a woman might not know she is pregnant.

5. Many birth defects are diagnosed after a baby leaves the hospital.
Many birth defects are not found immediately at birth, but most are found within the first year of life. A birth defect can affect how the body looks, how it works, or both. Some birth defects like cleft lip or spina bifida are easy to see. Others, like heart defects, are found using special tests, such as x-rays or echocardiography.

6. Birth defects can be diagnosed before birth.
Tests like an ultrasound and amniocentesis can detect some birth defects such as spina bifida, heart defects, or Down syndrome before a baby is born. Prenatal care and screening are important because early diagnosis allows families to make decisions and plan for the future.

7. Birth defects can be caused by many different things, not just genetics.
Most birth defects are thought to be caused by a complex mix of factors. These factors include our genes, our behaviors, and things in the environment. For some birth defects, we know the cause. But for most, we don’t. Use of cigarettes, alcohol, and other drugs; taking certain medicines; and exposure to chemicals and infectious diseases during pregnancy have been linked to birth defects. Researchers are studying the role of these factors, as well as genetics, as causes of birth defects.

8. Some birth defects can be prevented.
A woman can take some important steps before and during pregnancy to help prevent birth defects. She can take folic acid; have regular medical checkups; make sure medical conditions, such as diabetes, are under control; have tests for infectious diseases and get necessary vaccinations; and not use cigarettes, alcohol, or other drugs.

9. There is no guaranteed safe amount of alcohol or safe time to drink during pregnancy.
Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical problems and problems with behavior and learning which can last a lifetime. There is no known safe amount, no safe time, and no safe type of alcohol to drink during pregnancy. FASDs are 100% preventable if a woman does not drink alcohol while pregnant.

10. An unborn child is not always protected from the outside world.
The placenta, which attaches a baby to the mother, is not a strong barrier. When a mother uses cigarettes, alcohol, or other drugs, or is exposed to infectious diseases, her baby is exposed also. Healthy habits like taking folic acid daily and eating nutritious foods can help ensure that a child has the best chance to be born healthy.
For more information: www.cdc.gov/birthdefects.

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


 

Sleep during pregnancy

Almost all pregnant women have sleep problems at some point. Nausea, difficulty finding a comfortable position, having to get up umpteen times to pee, etc. all contribute to problems in Slumberland. Here are a few positioning tips:

Avoid sleeping flat on your back.

   • This position puts the full weight of your uterus on your back and on the major vein that carries blood between your lower body and heart.

   • Sleeping on your back can increase your chances of getting backaches. It can also aggravate digestive problems, heartburn and hemorrhoids.

   • Try to get used to sleeping on your side, particularly on your left side. This position can improve your circulation and help reduce swelling in your feet.

Use pillows.

   • Tuck one pillow between your legs.
   • Use more pillows to support your back and abdomen.
   • If you suffer from shortness of breath or heartburn, use pillows to lift up your upper body.


For more tips on getting through the night, or nap, read our information on sleeping problems.


 

Monday, January 20, 2014

On bedrest? Here are ways to combat boredom

If you’re pregnant and on bedrest, for all or much of your day, you are not alone.  What can you do to still feel productive and connected to the world during this time?Here are some suggestions:

Let things that don’t matter… go! (or get some pixie dust)

It is next to impossible to have your house run as well as if you were not on bedrest… unless of course you have a Fairy Godmother.  But, in the absence of a magic wand or pixie dust, lower your expectations on how clean or orderly your home will be at the moment. Then you won’t stress about what is not done. In other words, cut yourself a break when it comes to how you usually get things done.  You are giving yourself time off. Think of it as “forced relaxation.”  Once your baby is here, these moments will be few and far between.

Misery loves company and virtual hugs

Log on to Share Your Story, the March of Dimes’ online community. There is a thread specifically for pregnant ladies on bedrest. Just “talking” with other women in the same situation will be supportive and comforting. Get your virtual hugs on a daily basis here!

Hello out there!…Stay in touch

A laptop can be a lifesaver. Now is a great time to try and stay in touch with friends whose friendships often fade due to lack of correspondence. Contact every friend that you have who lives out of state or out of the country. Once the baby arrives, keeping up with friends will be harder to do, so getting a jump on it now could be helpful. Then take the next step and put your address book on your computer to create labels for when you mail invitations, baby announcements or holiday cards.

Learn mini moves

Muscles become weak and atrophy (break down) when your body doesn’t move around. It happens very quickly. Ask your doctor if you can have a physical therapist visit you at home and give you some light exercises to do while you are in bed.  No double leg lifts, sit-ups or crunches please. Isometric exercises (where you tighten and release your muscles) may be just what you need. These minimal movements will help to keep some of your muscles from losing strength. Also, soft, gentle stretches and ankle rolls (moving your toes around in circles) will help with leg circulation and swelling. But, don’t take on any movements or exercises without your doc’s nod of approval first. And, remember, once your baby is here, you can gradually get back to your pre-pregnancy strength and body (after your doc gives you the go-ahead).

Work on your recipe collection

If you cut and clip recipes from magazines and have them stuffed into a drawer to organize “one day,” this may be just the right time. You can create a file on your computer and then have someone scan the recipes for you to upload. Then, organize your computer file by food group so you can easily find a recipe when you want it.

Update the baby book

If you have other children and still have not organized their baby books, this could provide you with the disciplined time to get it done. Keep markers, scissors, glue, tape and stapler on your night table and chip away at updating the book a little at a time. You’ll be so glad to have this keepsake to remember every precious milestone and moment.

Although research has not proved that bedrest is effective, it is still a common method of treatment for cervical insufficiency or other pregnancy problems. Many doctors recommend bedrest for conditions like high blood pressure, bleeding or carrying multiples that increase their risk of going into preterm labor. Whatever the reason for your bedrest, hopefully, your bed will become your new command central and your projects will help the time to fly by quickly.

What has worked for you?  We’d love to have you share your survival strategies.


 

Friday, January 17, 2014

Folic acid helps prevent neural tube defects

Today’s guest post is from the CDC’s National Center on Birth Defects and Developmental Disabilities.

Folic acid is a B vitamin. If a woman consumes the recommended amount of folic acid before and during early pregnancy, it can help prevent some major birth defects of the baby’s brain (known as anencephaly) and spine (known as spina bifida). Anencephaly is a serious birth defect in which parts of a baby’s brain and skull do not form correctly. Babies born with anencephaly cannot survive. Spina bifida is a serious birth defect in which a baby’s spine does not develop correctly, and can result in some severe physical disabilities. All women, but especially those who want to become pregnant, need 400 micrograms (mcg) of folic acid every day.

Do I need folic acid?
Yes! Every woman needs to get enough folic acid each day, even if she does not plan to become pregnant. This is because our bodies make new cells every day—blood, skin, hair, nails and others. Folic acid is needed to make these new cells. Start a healthy habit today and get 400 mcg of folic acid every day.

Why can’t I wait until I’m pregnant to start taking folic acid?
Birth defects of the brain and spine (anencephaly and spina bifida) happen in the first few weeks of pregnancy, often before a woman finds out she’s pregnant. Also, half of all pregnancies in the United States are unplanned. These are two reasons why it is important for all women who can get pregnant to be sure to get 400 mcg of folic acid every day, even if they aren’t planning a pregnancy any time soon. By the time a woman realizes she’s pregnant, it might be too late to prevent these birth defects. Starting today is the best option!

How do I get folic acid?
An easy way to be sure you’re getting enough folic acid is to take a daily multivitamin with folic acid in it. Most multivitamins have all the folic acid you need. If you get an upset stomach from taking a multivitamin, try taking it with meals or just before bed. If you have trouble taking pills, you can try a multivitamin that is gummy or chewable. Also be sure to take it with a full glass of water.
Folic acid has been added to foods such as enriched breads, pastas, rice and cereals. Check the Nutrition Facts label on the food packaging. A serving of some cereals has 100% of the folic acid that you need each day.

In addition to getting 400 mcg of folic acid from supplements and fortified foods, you can eat a diet rich in folate. You can get food folate from beans, peas and lentils, oranges and orange juice, asparagus and broccoli, and dark leafy green vegetables such as spinach, and mustard greens.
For More Information
CDC’s Folic Acid HomepageBirth Defects COUNT
Spina Bifida Overview
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Wednesday, January 15, 2014

Snowsuits and seat belts

The temperature has dropped, snow is falling and we have bundled up the kids in winter wear making them look like the Pillsbury Dough Boy. That’s great for keeping them toasty while running around outside, but it’s often not so safe when traveling in a car.
A bulky coat under a child seat harness can result in the harness being too loose to be effective in a crash. A too loose harness may lead to injury from severe jarring or even being tossed from the car during an accident.

Consumer Reports offers this simple way to check if your child’s coat is too big to wear under their harness, as well as what you can do test if it’s too big:
• Put the coat on your child, sit them in the child seat and fasten the harness. Tighten the harness until you can no longer pinch any of the harness webbing with your thumb and forefinger.
• Without loosening the harness, remove your child from the child seat,

• Take the coat off, and put your child back in the child seat and buckle the harness straps, which are still adjusted as they were when he was wearing the coat.
• If you can now pinch the webbing between your thumb and forefinger, then the coat is too bulky to be worn under the harness.

So, preheat your car, take your child’s coat off and buckle him snuggly into his harness. You can then use his coat as a blanket, or tuck a baby blanket around him.  He’ll be warm and you’ll know that he’s good and safe.

Monday, January 13, 2014

Midwifery - What does a midwife do?

A certified nurse-midwife is a registered nurse with advanced, specialized training and experience in taking care of pregnant women and delivering babies. Certified nurse-midwives are licensed to provide care before, during and after delivery.

There are several different types of midwives, each holding different certifications based on their education and/or experience. Certified nurse-midwives (CNMs) and certified midwives (CMs) attend approximately 93% of all midwife-attended births in the United States, and as of 2010 they are required to have a master’s degree in order to practice midwifery.
Midwifery care fits well with the services provided by obstetrician/gynecologists (OB/GYNs), who are experts in high risk, medical complications and surgery. By working with OB/GYNs, midwives can ensure that a specialist is available if a high-risk condition should arise during pregnancy or labor and delivery.

Once your baby is here, a midwife can assist with questions about breastfeeding (it’s not as easy as you think.) Midwives can provide you with health care in the postpartum period and between pregnancies at well woman visits. They can provide pain medications, birth control, screenings and vaccinations. They treat women from the teen years through menopause.
Here is a link to more information about midwives from the American College of Nurse Midwives.

Friday, January 10, 2014

Adjusting to life after the holidays

Welcome back to the Delays and Disabilities series. I hope that you had a wonderful holiday season.

It seems like yesterday I was blogging about how to cope with all the extra excitement and stress that often accompanies the holidays. I hope that some of the tips helped you and your child with special needs to enjoy the season.

Two steps forward, one step back

Depending on how your past few weeks went, you may find that establishing your new “old routine” is especially challenging. You may wonder why things that your little one used to do so well, has now become a struggle, or has even been totally forgotten. Routines and accomplishments once mastered have somehow disappeared. It may seem like you have taken a step backward.

The “two steps forward and one step back” pattern is a common one among children with special needs. Often, it doesn’t take a lot to throw our kids off kilter. But, if you know that this is common, when it happens you won’t feel too thrown off by it. All of the past excitement of the holidays was difficult for your little one – and now, re-adjusting to life is…well…difficult, too. Just try to keep your cool and patiently bring your child along the path again, step by step, until old routines and behaviors are mastered, once again. As usual, praise and positive reinforcement help so much.

If you have any concerns, speak with your child’s health care provider. It is always important to rule out possible reasons for unusual behavior (such as ear infections or other illnesses) before soldiering on.

Also, re-read my blog post on Re-entry – life after vacation. It includes tips on how to master going back to your new “old” routine.

Look for possible positives

My daughter used to have a surge in her speech vocabulary after a trip or holiday. Her speech therapist used to love it when we went away or had a break in routine. Although the change in routine was always hard on my daughter (and me) at the time, the after-effects would result in new connections for my daughter. And, although re-adjusting to her old routine was indeed a challenge again, the benefits from her language boost were well worth it. So, keep an eye out for possible positive gains – they may appear when you least expect them!

Bottom line

Just remember, it’s a new year, with all new hopes for a wonderful future.  Try to take it one moment at a time. Baby steps.

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 menu on the right side to view the archive of past blog posts. As always, we welcome your comments and input.

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

Wednesday, January 8, 2014

My 2014 Resolution: Tell them the REAL number

I knew the question was coming.  I struck up a conversation with a woman at Target the other day.  She had three adorable girls with her.  We discussed everything about motherhood and kids and then she asked the dreaded question, “How many kids do you have?” 

I am the mother of three amazing boys, two living and one in Heaven, our guardian angel.  Though my youngest was with us for only a few days, he was and is a huge part of our family.  But how does that translate to a random stranger who innocently asks you that question?

My answer changes with each conversation.  Sometimes I say two boys, sometimes I say three but stop at that, and sometimes I do go into a little more detail about our sweet little boy.  I feel guilty for not including all of our boys, I feel guilty for telling people I have three boys, leading them to believe I have three boys here with me, and I feel guilty if I tell them the truth and then see that awkward foot in their mouth look they give me.  Guilt, guilt, guilt. 

That was 2013. This is 2014: I’m done with the guilt.  Time after time, I’ve talked to women and men who have the same inner struggles; people who have lost babies through miscarriage, prematurity, sickness, or unforeseeable causes and couples who battle infertility, and long to see that plus sign on the pregnancy test.  Why do we feel so much unspoken pressure to silently put these experiences behind us and move on with a smile as if nothing happened?

We live in a society that openly discusses and embraces the amazing efforts to raise awareness  around causes such as breast cancer, multiple sclerosis and heart disease, just to name a few.  But why is something like the loss of a baby still such a taboo subject? 

Miscarriage happens to more women than breast cancer.  Odds are, if not you, than someone you know has suffered from a miscarriage.  These women and their partners struggle silently, feeling guilty that they feel so sad, knowing it was still early. Often people tell me they feel bad talking about their struggles in front of me because my baby was born and lived days before he passed away. That is so heartbreaking to me.  A baby is a baby, no matter how long they are with us.  As soon as parents see the positive test, or hear the first heartbeat, that baby becomes part of their family.  It’s not fair for them to cry alone late at night or fall into depression without feeling like they can or should talk about it. 

No matter how it happens, losing a baby or trying for years to conceive, has become a daily and even hourly occurrence. Yet we still don’t talk about it.  This is why, in 2014, I pledge to share my story as often as I can, to reach out to as many women that I can who have gone through these heartbreaking experiences and tell them they have a support group in me.  I realize everyone is different, everyone grieves differently and if you’re not up for sharing your story that’s okay.  But I hope by sharing my story we can start a conversation, and get rid of the taboo.  Lets talk, people!  For those of you reading who are lucky enough never to have experienced this, you can help by spreading the word.  Encourage people to give their REAL number and be proud of it.  Talk about it with your family, coworkers, your friends, anyone.  Just talk.    Women and men everywhere will thank you.
by Sara Raak