Archive for the ‘Help for your child’ Category

March 3rd is the first ever World Birth Defects Day

Wednesday, February 25th, 2015

WBDD_LogoFamilies frequently write to the March of Dimes and share a story about their child’s struggle with a birth defect. Often, they ask what else they can do to help raise awareness. Well, here is a great way to get involved.

Help us mark the first World Birth Defects Day by participating in social media activities and sharing a story about the impact of birth defects on you and your family.

The March of Dimes and 11 other international organizations, including the CDC and the WHO, have created the first-ever World Birth Defects Day on March 3rd. We hope to raise awareness of this serious global problem and advocate for more prevention, care and research to help babies and children.

Birth defects affect 1 in 33 infants worldwide. Half of these birth defects will be detected soon after birth; the other half will be diagnosed during the first year of life. Birth defects are a major cause of death in infants and young children. Babies who survive are at an increased risk for life-long disabilities.

We need you.

On March 3rd, share your story about the impact of birth defects on you, your child or someone you know. With our partners, we’ll be urging governments, non-governmental organizations, policymakers, researchers, and health care providers around the world to help us work together toward a healthier future for children.

What can you do?

1.  Post an announcement on your blog, Facebook, Twitter or other social media platform.

2.  Register to be a part of the World Birth Defects Day Thunderclap. A message will be sent out at 9:00 a.m. EST on March 3 to help raise awareness.

3.  Join the Buzzday on Twitter on March 3rd. Plan to send one or more messages using the #WorldBDDay tag at some point during the day. Retweet both promotional and day-of messages to build our buzz for the day.

We look forward to having you join the conversation. Together, we can make strides to improve knowledge and raise awareness.

For more information, email AskUs@marchofdimes.org. See other topics in the series on Delays and Disabilities- How to get help for your child, here.

From NICU to EI services

Wednesday, February 18th, 2015

preemie hand in adult handIf your baby was born prematurely or at a low birth weight, chances are he or she may benefit from Early Intervention (EI) services. EI services are designed to help your baby catch up developmentally. They can include speech, physical or occupational therapy, as well as other kinds of treatment.

Usually, the hospital NICU staff will give you the information to have your baby screened or evaluated so that services may begin soon after your baby gets home (if they are needed). But, parents – you should know that a doctor or hospital referral is not needed to start the process of requesting early intervention services. You can contact your state’s agency yourself. Although it is very helpful for hospitals to give parents all of the information they need to get services started early, a hospital referral is not a requirement for a screening.

Read this post on Early intervention for babies and toddlers to learn how to request a screening. In many cases, a phone call to your state’s early intervention program is all you need to initiate an evaluation (which is free of charge to you). EI services are available in every state and territory of the United States.

Don’t delay with delays. The sooner your baby gets help, the sooner he can start catching up. If you are concerned about your baby’s development, make the call, get the free screening, and put your mind at rest.

See other topics in the Delays and Disabilities series here.

Parenting your child with a heart defect

Wednesday, February 11th, 2015

in the NICUWhen your baby has a heart defect, it is overwhelming, exhausting, emotionally draining, and beyond scary. Have I left any adjectives out?

Congenital (present at birth) heart defects (CHDs) affect 1 in 100 babies every year. These heart defects can affect the heart’s structure, how it works, or both. Did you know that congenital heart defects are the most common types of birth defects? Each year, about 40,000 babies are born with a heart defect in the U.S. The good news is that more and more children born with CHDs are living longer, healthier lives, due to medical advances.

Heart defects develop in the early weeks of pregnancy when the heart is forming. Severe congenital heart defects are usually diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older. Depending on the heart defect, your child may or may not need active treatment. For example, some defects resolve on their own. However, there are heart defects that require more intensive treatment and care.

What is CCHD?

Critical congenital heart disease (CCHD) is a group of the seven most severe congenital heart defects:  Hypoplastic left heart syndrome (HLHS); Pulmonary atresia (PA); Tetralogy of Fallot (TOF); Total anomalous pulmonary venous return (TAPV, or TAPVR); Transposition of the great arteries (TGA); Tricuspid atresia (TA); Truncus arteriosus.

About 1 in 4 babies born with a heart defect has CCHD, or about 4,800 babies in the U.S. every year. Babies with CCHD need treatment soon after birth – often within hours, days or months, depending on the severity of the condition. A baby with CCHD will need ongoing treatment from a pediatric cardiologist, a medical doctor with advanced training.

Your child with CCHD

Some babies with CCHD will receive surgery soon after birth, and others require subsequent surgeries as they get older. The treatment your child receives will depend on the type and severity of the defect. If your child has been diagnosed with CCHD, it is important to understand his disease and the treatment that is required. Ask your child’s pediatric cardiologist and pediatrician all of your questions. The doctor can tell you if your child’s activity should be encouraged or restricted, if your child needs antibiotic treatment before certain procedures, if your child requires extra calories (from food) to help maintain his health, if he needs physical therapy or other kinds of therapies.

Children with heart defects may be delayed in reaching their developmental milestones. Early intervention may help enable your child to make strides and catch up. Other children may develop a disability over time. The early intervention program is designed to be family centered – moms and dads receive help in parenting their child, and the child receives therapy to keep progressing. Early intervention, together with medical advances, are helping children with CCHD live richer, fuller lives.

You may need support

Parenting a child with a congenital heart defect involves a blend of vigilance, medical interventions, health advocacy and lots of love and patience. The March of Dimes’ online community, Share Your Story, is a place where parents of babies with heart defects as well as other birth defects or disabilities, can go to find support, comfort and information. There is nothing like the camaraderie of another parent who has walked in your shoes to help you through your journey.  Just log on and post a comment and you will be welcomed and supported.

Where can you learn more?

Visit our website to learn more about CCHD. We discuss the most common heart defects, how they are diagnosed and treated, as well as possible causes. You will also learn about screening tests your baby can have to determine if he has CCHD. Additional guidance on parenting a child with a heart defect is available on the CDC website.

For more information about any of the heart defects listed above, contact us at AskUs@marchofdimes.org and we will be happy to help. To see similar posts in the Delays and Disabilities series, click here.

 

 

 

 

Sibling visits to the NICU can be helpful

Wednesday, February 4th, 2015

Sibling visits baby in NICUPrematurity affects everyone, including siblings. When older children have a sister or brother in the NICU (neonatal intensive care unit) they sense their parents’ concern and worry, and their lives are thrown off balance. Siblings of a preemies go through their own NICU journey of sorts – from experiencing anxiety, worry and frustration to happiness and joy. However, there are some steps you can take to help your older children through the ups and downs of the NICU experience.

If your baby is in the NICU, it may be possible for your other children to visit. Ask the head nurse of the NICU if the hospital allows this and if your preemie is strong enough for the visit. Often, seeing their baby brother or sister in the NICU helps older children understand what is happening and to realize why mom and dad are not home as much. Even a short visit can help put the situation into perspective. Visiting can also make siblings feel like they are a part of the journey and that they are helping out.

But, NICUs can seem scary to children, and seeing a tiny baby hooked up to monitors and tubes can be terrifying. Here are ideas (some from the Preemies book) to help make the visit successful. In all cases, get the permission of the NICU staff first:

• Have your older children send in a toy or drawing ahead of the visit, and display it prominently near your preemie’s bed. When your children arrive, they will see their presence and will feel an immediate connection.

• Describe your baby’s condition to your children before the visit. Perhaps show them a doll that is about the size of your preemie, so they are not too surprised when they see their tiny sibling.

• If it is possible, allow your children to touch the baby. Touch helps to establish a bond. Of course, the NICU nurse will tell you if this will be allowed or not, depending on your baby’s current medical condition.

• Ask if your children can talk, read a book, or sing a song to the baby (softly). It will give them the feeling of doing something positive to help.

• Ask if your hospital has a NICU Family Support Program. The March of Dimes partners with many hospitals in the United States. Such programs comfort and support families, including siblings. Some hospitals also have a corner where siblings can play as they wait while their parents visit. They may even meet other siblings in this play space, and be able to share their feelings with other kids who understand what they are experiencing.

There is no doubt about it – having a baby in the NICU is a difficult journey for the whole family. Hopefully, short visits will help your other children to understand, feel included and “help out”, which will in turn, lessen the mystery of having a little brother or sister in the NICU.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes online community for NICU families. Also, see this blog post for helpful info on a father’s role in the NICU.

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.

Have you found your child’s passion?

Wednesday, January 28th, 2015

building with blocksWhen 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 oftwatering flowersen, 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.

 

 

Tracking birth defects helps states help you

Wednesday, January 21st, 2015

Birth defects on PeriStats by stateDid 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.

 

 

Birth Defects: What have we learned?

Wednesday, January 14th, 2015

Birth defects prevention month CDC guest postSpecial 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.

 

 

New Year’s resolutions – good or bad for kids with special needs?

Wednesday, January 7th, 2015

celebrationI 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.

Happy New Year!

Friday, January 2nd, 2015

fireworksAll of us at News Moms Need thank you for your comments, questions and support throughout the year.  We wish every one of you and your families a healthy and happy year ahead.

I look forward to continuing the series on Delays and Disabilities - How to get help for your child, next week.

See you in 2015!

Turning 2 – Thank YOU!

Wednesday, December 31st, 2014

2 year old birthday cakeAs the News Moms Need’s blog series on Delays and Disabilities – How to get help for your child turns 2 years old next month, I just want to take a moment to thank all the parents who read this blog and send in comments or questions. It is a privilege for me to write it, but, without you, there would not be this blog series…so, thank you. Parents of kids with special needs are unique, and we all need one another to spur us on and help our kids. I look forward to sharing ideas and thoughts as we slide into the new year.

May 2015 bring good health, progress and success to all of you.

Happy New Year everyone!