Archive for the ‘Help for your child’ Category

Avoid a tragedy – learn safe sleep strategies

Wednesday, March 25th, 2015

cropped sleeping babyEvery so often, we hear a tragic story from a new parent. Last week, a three week old baby died of SIDS (sudden infant death syndrome). This post is in memory of that baby, and our hearts go out to the family.

It is important for parents and caregivers to know safe sleep strategies. Please help us get the word out: ALWAYS, put your baby to sleep on her back, in a crib without bumpers, blankets, stuffed toys or loose bedding.

Back to Sleep and Tummy to Play is an easy way to remember that all healthy babies should be put to sleep on their backs every time until their first birthday. Do not put your baby to sleep on her side, either. Most babies will roll over both ways by the end of the 7th month, but always start them out going to sleep on their backs. You can give your baby tummy time to help strengthen her back muscles when she is awake and you are watching her.

About 4,000 infants (less than one year of age) die suddenly and unexpectedly each year in the United States, according to the CDC. SIDS is the leading cause of death in babies between 1 month and 1 year old. Most SIDS cases happen in babies between 2 and 4 months old. We don’t know what causes SIDS, but certain things can put babies at higher risk:

  • Bed sharing – do not sleep in the same bed as your baby. Sleeping in the same room is suggested, just not the same bed. Bed sharing is the biggest risk factor for SIDS in babies under 4 months of age.
  • Sofa or couch sleeping – do not let your baby sleep on the couch or soft surfaces, including pillows. Nearly 13 percent of infant sleeping deaths are sofa-related.
  • Wearing too many clothes or sleeping in a room that is too hot.
  • Sleeping on her tummy or side.

Read more about safe sleep, mom and baby care and other tips for reducing the risk of SIDS.

If you have questions about putting your baby to sleep, send them to AskUs@marchofdimes.org or ask your baby’s health care provider.

If you or someone you know has lost a baby due to SIDS or an unknown reason, the Pregnancy and Newborn Health Education Center offers bereavement packets to families. Just email us with your mailing address and we will send one to you.

See other topics in the series on Delays and Disabilities- How to get help for your child, here.

Oh to be understood!

Wednesday, March 18th, 2015

child learning to readHelping a child with attention or learning problems is a feat that most parents find intensely challenging. You may know that your child is bright, yet she can’t seem to keep up with her peers at school and is becoming increasingly difficult to manage at home.

Children with disabilities have a hard time expressing their frustrations, as they don’t fully understand what they should be doing. As a parent, you have expectations for your child, but you don’t see what they see. You can’t fully grasp their struggle.

In order to help your child, you first need to have an accurate idea of what she is experiencing. By getting in her shoes, even for a little while, you will develop an appreciation for her struggles, and have a starting point from which to start your journey of setting up interventions.

What if you could see what your child sees?

I’d like to introduce you to a novel web based resource for parents of children with learning or attention issues, called (appropriately) Understood. Developed by a team of professionals from the National Center for Learning Disabilities along with lots of input from parents, they created a digital resource that can show you what your child is “seeing.”

The section entitled “Through your child’s eyes” has simulations to help you understand your child’s struggles with organization, attention, reading, writing or math. Once you can see what your child sees, and feel what she feels, it will help you to find patience when you thought you had none, and find energy to create an appropriate program for her.

When my daughter first went to a school that specialized in teaching children with learning disabilities, one of the exercises the parents had to do was similar to one on this website. Even though it took place many years ago, I remember it to this day. It was eye opening and mind boggling. We parents had NO IDEA our kids were seeing the world the way they were, and were faced with such a huge mountain to climb every day. Many of us felt guilty – we simply did not know the pain our kids were in every day. But, how could we have known? Until we were shown exactly how our kids were struggling, we did not truly understand. Life changed for me after that day. I had a different perspective and attitude about my daughter’s disability, not to mention a newly discovered abundance of patience that I did not know I possessed.

The simulations on Understood will help you to see the world through your child’s eyes, so that you can develop patience, empathy and most importantly an action plan specific to your child’s needs.

For other posts in this series, see the Table of Contents.

Understanding intellectual and developmental disabilities

Wednesday, March 11th, 2015

Raising a child with developmental disabilities is a long road filled with challenges. It is best to have information and support to help you along the way.

Since March is National Intellectual and Developmental Disabilities Awareness Month, it gives us an opportunity to increase understanding about these disabilities, and to get the word out on support services that exist to help families. Equally important is learning how some disabilities can be prevented.

Developmental disabilities (DDs) include a wide group of conditions due to an impairment in physical, learning, language, or behavior areas. About one in six children in the U.S. has a developmental disability or a developmental delay.

DDs are diagnosed during the developmental period or before a child reaches age 18, are life-long, and can be mild to severe. They impact a person’s ability to function well every day.

Developmental disabilities is the umbrella term that includes intellectual disabilities (formerly referred to as mental retardation), which is an impairment in intellectual and adaptive functioning. For example, individuals with intellectual disability may have problems with everyday life skills, (such as getting dressed or using a knife and fork), thinking, understanding, reasoning, speaking and the overall ability to learn. See this fact sheet to learn more.

DDs also include: attention deficit hyperactivity disorder, autism, cerebral palsy, Down syndrome, fetal alcohol spectrum disorders, fragile X syndrome, hearing loss, vision impairment, muscular dystrophy, Tourette syndrome, learning disabilities, among other disorders.

Developmental disabilities may be due to:

• Genetic or chromosomal problems
Premature birth
Exposure to alcohol during pregnancy
• Certain infections during pregnancy

However, in many cases, the cause is unknown.

Some disabilities can be prevented

If you are thinking about becoming pregnant, learn how some disabilities and birth defects can be prevented.

Families need support

This blog series offers lots of resources – check out the Table of Contents for a list of what to do if you suspect your child may have a developmental delay or disability.  The series is updated every Wednesday.

You can also join our online community, Share Your Story, where parents of children with developmental delays and disabilities support one another.

In addition, here are a couple more resources:

The Arc: For people with intellectual and developmental disabilities – For more than 60 years, and with nearly 700 chapters in the U.S., the ARC provides supports and services for people with disabilities and for affected families.

AIDD – According to their website, the Administration on Intellectual and Developmental Disabilities works to advance the concerns and interests of individuals with intellectual and developmental disabilities through an array of programs funded under the Developmental Disabilities Act. AIDD is dedicated to ensuring that individuals with developmental disabilities and their families are able to fully participate in and contribute to all aspects of community life in the United States and its territories.

World BD day gets word out globally

Wednesday, March 4th, 2015

Sick babyThe twitter-sphere was all aglow yesterday for the first-ever World Birth Defects Day. In fact, 6,154,146 people were reached worldwide! Yup. It’s not a typo.

Twelve leading global organizations including the March of Dimes, along with scores of other foundations, hospitals, health care providers, government agencies, parents and individuals with birth defects took to Twitter to raise awareness. People in Australia, Belgium, Brazil, Canada, Chile, England, Germany, Greece, India, Ireland, Italy, Malta, Mexico, Mongolia, Netherlands, Panama, Philippines, Rwanda, Scotland, Spain, Switzerland, Tanzania, Turkey, and individuals from all over the United States participated. As the day progressed, #worldbdday tweets continually popped up on my computer screen. In case you missed it, here is a snapshot of important messages.

Birth defects are surprisingly common

Did you know that every 4 ½ minutes a baby is born with a birth defect in the US?

In the US, about 1 in 5 babies die before their 1st birthday due to birth defects.

Birth defects affect 1 in 33 infants worldwide.

More than 8 million babies worldwide are born each year with a serious birth defect.

There are thousands of different birth defects, and about 70% of the causes are unknown.

The most common birth defects are heart defects, neural tube defects and Down syndrome.

In the US, a baby is born with a congenital heart defect every 15 minutes.

More than 300,000 major birth defects of the brain and spine occur worldwide each year.

Many birth defects are discovered after the baby leaves the hospital or within the 1st year of life.

More than 3.3 million children under 5 years of age die from birth defects each year.

Babies who survive & live with birth defects are at an increased risk for long-term disabilities & lifelong challenges.

Early intervention services may help babies w/ BDs; get your child help by starting early.

Birth defects are costly. Financial and emotional costs of birth defects take a toll on families and communities worldwide.

Learn how to decrease your risk of having a baby with birth defects

Taking folic acid before & early in pregnancy can help to reduce the risk for BDs of the brain & spine.

Smoking during pregnancy is associated with an increased risk of certain BDs. It’s never too late to quit.

We can’t prevent all birth defects. We CAN prevent FASD! (Fetal Alcohol Spectrum Disorders)

FASDs are 100% preventable.

Alcohol can cause your baby to have BDs (heart, brain & other organs). Don’t drink if you are pregnant or trying to conceive.

Being overweight before pregnancy can increase the risk for some birth defects.

Not all BDs are preventable, but women can take steps toward a healthy pregnancy.

Make a PACT: plan ahead, avoid harmful substances, choose a healthy lifestyle, and talk to your doctor.

Raise awareness

Awareness of birth defects & the importance of care for children with these lifelong conditions is key.

The mission of the March of Dimes is to prevent birth defects, premature birth and infant mortality.

March of Dimes has invested more than $50 million in birth defects research in the last 5 years.

Genetics has long been a main theme of March of Dimes research.

MOD grantees have discovered genes that cause or contribute to a number of common birth defects, including fragile X syndrome, cleft lip and palate, and heart defects.

These discoveries pave the way for treatments and preventions for these birth defects.

 

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.

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.