Posts Tagged ‘prematurity’

Infant loss affects the tiniest family members

Friday, October 14th, 2016

Loss affects entire families every day, in many different ways. In honor of Pregnancy and Infant Loss Awareness Day tomorrow, here is the heartfelt story of a family who lost their precious daughter Madeline, due to complications from prematurity.

We welcome guest blogger Heather as she shares the ripple effects of losing Maddie, as seen through the eyes of one of her children.

Maddie“Mom, we were counting our family members in school today.” The Kindergarteners have been doing a lot of exercises where they “find numbers” in the world, like counting steps, trees, etc.

“That’s fun. Do any of your classmates come from big families?”

“Yep! I didn’t know exactly how many to count. There’s four of us, but five if you count Rigby (our sweet dog). Six if Maddie hadn’t died.”

– – –

In our house, we don’t make a big deal about Madeline. We talk about her when she comes up naturally, which means sometimes we discuss her multiple times a day, and sometimes we’ll go several days without mentioning her.

I, however, say her name every day, even if it’s just to myself. I wonder what she’d be like, who her friends would be, which classroom she’d be in. I think about her without even thinking about it. Missing her has become one of my body’s automatic functions, like breathing.

Protecting myself has become automatic, too. I rarely bring her up with strangers anymore. I know many loss moms never hesitate to mention all of their children when given the chance, but I don’t. Basic questions like, “Oh, do you have other kids?” don’t hurt me the way they used to. I don’t feel like I am denying her when I don’t mention her. Instead, I am saving myself the agony of having to answer additional questions, having to relive it, having to watch a person I don’t know process this complicated answer to their simple question. I know about her, the people who love us know about her, and our future friends will one day know about her, too.

Of course, the people who surround Annabel at school every day aren’t strangers, not anymore. But this is her domain, so I follow her lead. Her drawings are of the four of us and Rigby. She said that one time she mentioned she had an older sister, but her friends were confused. I explained to her why they might be confused, and I reminded her that she only has to say what she is comfortable with – it’s okay to talk about her sister, and it’s okay not to.

“I told my teacher four or five or six, and I counted everyone for her.”

“…and what did she say?”

“She said all of my answers were right!”

Maddie’s story

After 28 weeks and 6 days of an extremely rocky gestation, Madeline Alice was born on November 11, 2007. She weighed three pounds one ounce, and was 15 3/4 inches long. Because she was over 11 weeks premature, she was rushed to a Level III Neonatal Intensive Care Unit. She spent 68 long days there until the wonderful January afternoon we brought her home.

Maddie’s prematurity left her lungs scarred, but her amazing happiness remained unscathed. She lit up the lives of everyone she met (and countless more she didn’t) with her bright eyes, infectious laugh, and gigantic grin.

On April 6th, Maddie came down with a severe respiratory infection. She left the world suddenly and unexpectedly April 7, 2009.

We miss her with every fiber of our being.

News Moms Need thanks Heather for giving us a glimpse into how deeply the effects of loss are felt, and how it affects every family member for a lifetime. You can read more about Heather and her family here.

Give them tomorrow

Wednesday, September 7th, 2016

Give them tomorrowToday is an important one here at the March of Dimes.

Today we launch our new campaign, Give them tomorrow, to raise awareness and funds to fight birth defects and premature birth, the #1 killer of babies in the United States.

This campaign is different. You have the opportunity to help give a fighting chance for every baby by:

  • sending a message of hope to a family of a baby in the NICU (newborn intensive care unit), which the March of Dimes will hand-deliver.
  • sharing your baby’s first milestones at #babysfirst with our social community.
  • engaging with us on World Prematurity Day, November 17th to raise awareness and learn about the cutting edge prematurity research that saves babies’ lives.

We have set a goal to generate 380,000 actions to save babies’ lives, to symbolize the 380,000 babies born too soon each year in the U.S. That’s 1 in 10 babies born prematurely (before 37 weeks of pregnancy). This rate is higher than most other high-resource nations.

Even babies born just a few weeks too soon can face serious health challenges and are at risk for lifelong disabilities including breathing problems, vision loss, cerebral palsy, developmental delays and intellectual disabilities. The problem of prematurity involves babies being born too soon and often with birth defects and complications that affect them for life — that’s if they make it through the first critical days and weeks. There are so many challenges for these babies and their families from day one that tomorrow is a dream.

Give them tomorrow is supported by our corporate partners who are committed to saving babies’ lives. Partners in 2016 include Mud Pie, Philips Avent, Famous Footwear, ALEX AND ANI, ALDI, Bon-Ton, and Anthem Foundation.

Won’t you join us today as we make a difference in the lives of all babies?

Together we can give them tomorrow by doing something today.


We're in this together


The March of Dimes is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs. For the latest resources and health information, visit and You can also find us on Facebook or follow us on Instagram and Twitter.

Preemies need vaccines, too

Wednesday, August 31st, 2016

Special thanks to the CDC for sharing this post with us in honor of National Immunization Awareness Month.

NICU babyHaving a premature baby can be stressful, and as a parent of a preemie, you may have many questions about keeping your baby healthy. One of those questions may be about whether or not you should follow the Centers for Disease Control and Prevention’s (CDC’s) recommended immunization schedule for your baby, or if you need to adjust vaccine timing based on your baby’s early arrival.

The CDC and pediatricians agree that preterm babies, regardless of their birth weight and size, receive most vaccines according to their chronological age (the time since delivery). In fact, vaccinating as early as possible is important, because according to The Children’s Hospital of Philadelphia, preterm babies don’t get as many maternal antibodies through the placenta as full term babies do. This means they are more vulnerable to diseases during their first months of life. The recommended immunization schedule protects against 14 of these diseases, which can be very serious for babies.

Vaccines are safe for preemies, but like any medication, vaccines can cause side effects. The most common side effects are mild (such as redness where the shot was given) and go away within a few days. The side effects associated with vaccines are similar in preterm and full term babies.

There is one exception to following the recommended schedule — the hepatitis B vaccine, which is typically given at birth. This vaccine might not work as well in preterm babies weighing less than 70.5 ounces (2,000 grams). If a baby weighs less than 70.5 ounces and the mother is not infected with hepatitis B, the baby should receive the first hepatitis B dose one month after birth. If the mother is infected or her status is unknown, the baby should receive the vaccine at birth, but it should not be counted as part of the three-dose hepatitis B vaccine series. Then one month after birth, the baby should begin the full three-dose series.

The rotavirus vaccine may also be given differently to preterm babies. Babies usually get the first dose of the vaccine at 8 weeks, although vaccine is licensed for use as early as 6 weeks of age. CDC recommends that if a baby 6 weeks or older has been in the hospital since birth, the rotavirus vaccine should not be given until discharge.

Preemies are vulnerable to diseases and serious infections. Vaccinating according to the recommended schedule is one of the best ways to keep them healthy. For more information, talk to your child’s doctor or visit CDC’s vaccine website for parents.

Have questions? Send them to our health education specialists at


Pragmatics – helping your child learn the rules of social language

Wednesday, May 18th, 2016

kids-playing-with-a-ballIf you have a child with a developmental or speech delay, you may have heard the term “pragmatics.” It refers to the use of language in a social setting – with friends, at school, and at home. Often, it is not enough that a child learns grammar and vocabulary in order to communicate. He also needs to understand how these words come together in social language.

A child struggling with pragmatics may use few words to express himself or seem disorganized in the way he speaks. He may have a hard time taking turns in conversation, or make inappropriate comments. As he gets older, he may be able to learn to read (sound out and pronounce words), but may not understand what he is reading. Usually a difficulty with pragmatics is not diagnosed until a child is at least four or five years old, and sometimes it is not identified until years later.

The following information is from the American Speech-Language-Hearing Association:

Pragmatics involve three major communication skills

Using language for different purposes, such as

  • greeting (e.g., hello, goodbye)
  • informing (e.g., I’m going to get a cookie)
  • demanding (e.g., Give me a cookie)
  • promising (e.g., I’m going to get you a cookie)
  • requesting (e.g., I would like a cookie, please)

Changing language according to the needs of a listener or situation, such as

  • talking differently to a baby than to an adult
  • giving background information to an unfamiliar listener
  • speaking differently in a classroom than on a playground

Following rules for conversations and storytelling, such as

  • taking turns in conversation
  • introducing topics of conversation
  • staying on topic
  • rephrasing when misunderstood
  • how to use verbal and nonverbal signals
  • how close to stand to someone when speaking
  • how to use facial expressions and eye contact

If you are concerned about your child’s use of language, speak with his health care provider. It may be beneficial to have a specialist, such as a speech and language pathologist, test your child and provide appropriate therapy. If your child is three years old or older, he may qualify for services through your local school district. See this post to learn how to ask for a free evaluation.

To help your child use language appropriately in social settings, see the American Speech-Language-Hearing Association’s Pragmatic Language Tips.

To learn more about social communication disorders, see this article by Understood.

Have questions?  Send them to


Light and sound in the NICU

Wednesday, May 4th, 2016

nicu-baby2We all know that a mother’s womb is the best environment for a developing baby. But when a baby is born prematurely, this environment shifts from the quiet protected womb of mom to that of a bright and often noisy hospital setting. “Developmental care” is known as the effort to provide a preemie with an experience as similar to that of the womb as possible. This is done by making the effort to create a peaceful, stress-reduced environment. It seems to make perfect sense.

Experts agree that sounds should be kept to a minimum, as premature and sick babies are very sensitive to sound. According to the Preemies book, while in the NICU, you should:

• speak calmly in an even tone of voice
• avoid playing loud music
• close isolette cabinets and portholes gently
• avoid tapping fingers or placing bottles on an isolette
• use an isolette cover, which will help dampen noise.

However, not all experts agree on what to do regarding light. Some brain specialists offer the following suggestions:

• dim lights in the NICU
• cover your baby’s isolette with blankets to further shut out light
• use a low bedside light for when your baby needs care
• shield your baby’s eyes from direct light when you pick her up, and
• reduce noise as much as possible.

Yet, other specialists believe that the benefits of shielding your baby from light may depend on your baby’s age – the younger the baby, the more darkness he needs. And some specialists believe that light (as long as it is not glaring) may have positive developmental benefits.

To help figure out what is best for your baby, and to understand more about developmental care, talk to your baby’s neonatologist. You can also read more about it in this book Preemies: The Essential Guide for Parents of Premature Babies, 2nd Edition (2010), which provided the background for this blog post.

Questions? Send them to


Life-long effects of preeclampsia for mom and baby

Monday, May 2nd, 2016

Pregnant couple with doctorPreeclampsia is serious; it affects 2 to 8 percent of pregnancies worldwide. And it’s the cause of 15% of premature births in the U.S.

Preeclampsia is a condition that can happen after the 20th week of pregnancy or right after you give birth. It’s when a pregnant woman has high blood pressure and signs that some of her organs, like her kidneys and liver, may not be working properly. Some of these signs include having protein in the urine, changes in vision and severe headache.

What does this mean for moms?

If a woman had preeclampsia during a pregnancy, she has 3 to 4 times the risk of high blood pressure and double the risk for heart disease and stroke later in life. She may also have an increased risk of developing diabetes. And for those women who have had preeclampsia and delivered preterm, had low-birthweight babies, or had severe preeclampsia more than once, the risk of heart disease can be higher.

These facts are scary, especially since heart disease is the leading cause of death for women. But having preeclampsia does not mean you will definitely develop heart problems, it just means that this may be a sign to pay extra attention to your health.

What about babies?

Women with preeclampsia are more likely than women who don’t have preeclampsia to have preterm labor and delivery. Even with treatment, a pregnant woman with preeclampsia may need to give birth early to avoid serious problems for her and her baby.

Premature babies and low birthweight babies may have more health problems and need to stay in the NICU longer. And some of these babies will face long-term health effects that include intellectual and developmental disabilities and other health problems.

If you had preeclampsia in the past, there are things you can do now to reduce your future risk:

  • Talk to your health care provider. She can help you monitor your health now to reduce your risk for heart disease later.
  • Get a yearly exam to check your blood pressure, cholesterol, weight, and blood sugar levels.
  • Add activity into your daily routine. No need to run laps around the track, though. Here are some tips to help you get moving, whether you are pregnant or not.
  • Stick to the good stuff. Eat from these five food groups at every meal: grains, vegetables, fruits, milk products and protein. Check out our sample menu for creative ideas.
  • Ask your provider if taking low-dose aspirin daily may be right for you.
  • If you are a smoker, quit. Try to avoid second-hand smoke as well. Tobacco can raise blood pressure and damage blood vessels.

Have questions? Text or email us at

Prematurity, disabilities and special education

Wednesday, April 6th, 2016

Preemi in NICU_smA mom recently wrote to AskUs inquiring about services for her child who was born 12 weeks early. Her child was now in elementary school, had a hearing impairment, and was falling behind in school. She wanted to know how she could help him.

Research has shown that children born prematurely may have difficulties with learning, experience developmental delays, or have a disability. But, whether your child was born prematurely or not, if he is evaluated and has one of 14 conditions, he may be eligible to receive special education and/or related services. Often, a “developmental delay” is enough for a child age three or older to be eligible for services. In order to qualify, a child’s educational performance must be adversely affected due to the disability.

The 14 qualifying conditions are:

Developmental delay (subject to each state’s specific criteria, and usually only up to age 9 and sometimes younger)
Emotional disturbance
Hearing impairment
Intellectual disability
Multiple disabilities
Orthopedic impairment
Other health impairment
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment

Next steps

You can request an evaluation (which is free to you) through the special education administrator of your school district or the principal of your local elementary school. Sending the request in writing is always a good idea – such as an email. Then, the school should contact you to set up an appointment for an evaluation.

Learn more about who will test your child, the steps involved in the process and what happens next, in this blog post. If your child qualifies for services, they could be life changing. The first step is to seek help and ask for the evaluation.

Find other relevant posts in our series on Delays and Disabilities: How to get help for your child.

Have questions? Send them to


Pneumonia and preemies

Wednesday, March 16th, 2016

BabyOnChest-Pneumonia is an infection in the lung(s) which can make it hard to breathe. Premature infants are more prone to developing infections due to their immature immune systems. They were born before they could acquire their mother’s antibodies to fight off infection, which are usually transferred in the third trimester. In addition, due to prematurity, their lungs are not fully formed, making it easier to develop infections such as pneumonia.

Causes and treatments

Pneumonia can have different causes: viral, bacterial or even fungal. It can be hard for doctors to diagnose pneumonia, as it can look like other common preemie disorders, (eg. Respiratory Distress Syndrome). In addition, it may take some time for blood, urine or other lab tests to confirm the diagnosis. Therefore, as soon as pneumonia is suspected, most babies will receive an antibiotic that can fight a broad spectrum of bacteria to help combat the infection. Once the tests confirm the type of infection, the medication may be altered.

Your baby may also receive oxygen to help him breathe easier, or he may be placed on a ventilator. Keeping your baby well hydrated and nourished are also top priorities – his body needs nutrients to fight the infection. With all of this treatment, your baby’s lungs can begin to repair themselves.

Can pneumonia be prevented?

A premature baby may develop different infections for the reasons noted above. But the spread of infections can be avoided through the use of proper hygiene. Visitors who come to the NICU should be free from illness (colds, sore throats, coughs). All visitors should wash hands thoroughly or use foam disinfectant before seeing or touching your baby.

Some infections can spread through the air. Having visitors wear a face mask that covers the nose and mouth can provide an added layer of protection for your baby. NICU staff follows strict protocols regarding hand washing and keeping equipment squeaky clean. They are aware of how to prevent the spread of germs.

The good news

Most babies respond well to medications and recover without lasting issues.

Have questions? Send them to

The holidays are here…

Monday, December 7th, 2015

pregnant woman in bedBesides the usual stress of pregnancy and getting ready for your baby, the holidays often add more pressure, which can take a toll on your health. Feeling stressed is common during pregnancy, but too much can make you have trouble sleeping, have headaches or lose your appetite. High levels of stress that continue for a long time may cause health problems like high blood pressure, which can increase the chances of having a premature baby.

December is a very busy time: there are friends and families to see, holiday gatherings to attend, meals to cook, and gifts to buy. So much to do! During this time, remember to take care of yourself: breathe deeply, relax and concentrate on your pregnancy.

Here are some tips:

  • Keep moving. Exercise can help reduce your stress and prevent pregnancy discomforts. If you are shopping for gifts, walk an extra loop around the mall before you head out to your car. Park further away in the parking lot (this way you can also avoid some of the traffic of shoppers trying to park close to the mall entrance).
  • Holidays are a time for delicious desserts and heavy meals. Before you sit down and indulge in your family dinner, eat a healthy breakfast and lunch earlier in the day.
  • Extra sleep is important during this time, but taking breaks is just as important. If you have some free time between wrapping gifts, put your feet up, read a book or magazine, or watch a favorite TV show. Even just a 15 minute break can help you relax before your next task.
  • Ask for help. Holidays are a time of giving, but also receiving. Accept help when a friend or family member offers and ask for help when you are feeling tired or overwhelmed.
  • Cut back on activities you don’t need to do. Instead of spending time making a holiday dessert, why not have your favorite bakery do it for you?

Holidays can be stressful, but remember to take time for yourself.

Have questions? Email

Hearing loss in babies

Wednesday, December 2nd, 2015

baby's hearing testHearing impairment is the decreased ability to hear and discriminate among sounds. It is one of the most common birth defects.

We’re not sure what causes hearing loss in babies. Some possible causes are genetics (if you or your partner has a family history of hearing loss), viruses and infections during pregnancy, premature birth, low birthweight (less than 5.8 pounds), and infections after birth.

There are degrees of hearing loss, too. A baby can have mild, severe or complete hearing loss. Other times a child can hear but the sounds are garbled. Hearing loss is a common birth defect affecting 12,000 babies in the U.S. each year (nearly 3 in 1,000). If a child can’t hear properly, he may have trouble learning to talk.

Newborn screening

Ideally, your baby should have his hearing tested as part of the newborn screening tests which are done in the hospital after your baby is born. The CDC recommends that all babies be screened for hearing impairment before 1 month of age. Language and communication develop rapidly during the first 2 to 3 years of life, and undetected hearing impairment can lead to delays in developing these skills. Without newborn screening, children with hearing impairment often are not diagnosed until 2 to 3 years of age. By then, they have lost precious time to develop speaking skills. A timely diagnosis is important!

Getting help

If you have any concerns about your child’s hearing, don’t wait – have a conversation with his healthcare provider (a pediatrician or nurse practitioner). Here are other options:

  • Every state has an Early Hearing Detection and Intervention (EHDI) program. You can click here or call 1-800-CDC-INFO to locate your local EHDI program for services and information.
  • The CDC’s National Center on Birth Defects and Developmental Disabilities has a website on hearing loss in children, with specific pages for families, health care providers and others. The site contains information on prevention, signs and symptoms, screening and diagnosis, treatment of hearing loss, as well as statistical data on hearing loss. If you have any concerns about your child, start with the “Basics” and “Treatments” sections.
  • Additional resources and support networks related to hearing impairment and deaf children can be found here.
  • If your baby has a hearing impairment,  he may benefit from early intervention services, such as speech therapy. Learn how to access early intervention services in your area.

Bottom line

If your child has been diagnosed with hearing loss, getting help early is very important – preferably before 6 months of age.

Have questions: Text or email us at

Photo credit:  Baby’s First Test