Posts Tagged ‘prematurity’

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:

Autism
Deaf-blindness
Deafness
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 AskUs@marchofdimes.org.

 

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 AskUs@marchofdimes.org

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 AskUs@marchofdimes.org

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 AskUs@marchofdimes.org.

Photo credit:  Baby’s First Test

Is donor milk right for your preemie?

Monday, November 23rd, 2015

feeding in the NICUFor premature babies, breast milk can be lifesaving. It is more easily digested and provides protection against many diseases. Providing breast milk, however, can be a challenge for some moms. Many moms are not able to provide their baby with their own breast milk for various reasons, they:

  • are recovering from surgery or have certain medical conditions that make it difficult to initiate and maintain a milk supply;
  • find it difficult to pump enough milk to meet their baby’s needs;
  • have chronic conditions and need to take medications that may make their breast milk unsafe.

In these cases, donor milk may be the best option for your preemie, and a better alternative to formula.

What is donor milk and where does it come from?

A milk bank is a service that collects, screens, processes and distributes safe human milk to babies in need. All donated milk goes through a pasteurization process to eliminate bacteria while keeping the milk’s essential nutrients. The milk is then packaged, stored and ready to ship to hospitals or individual recipients at home. Lactating women who wish to donate their breast milk may do so through a milk bank.

Does your preemie need donor milk?

The nutritional needs of each baby depends on many different factors. It’s important to talk to your baby’s doctor to see if donor milk is right for your baby. Some hospitals have their own donor milk bank or have a partnership with a milk bank near them. If your baby’s doctor indicates that your baby will benefit from donor milk, he can write a prescription. For more information about the milk bank closest to you, visit the Human Milk Banking Association of North America.

Can you buy breast milk from another mom who has milk to spare?

There are risks with getting breast milk from a stranger or a friend; this milk is not tested or screened for infectious diseases or contamination. A study published in the American Academy of Pediatrics showed that out of 101 samples of milk purchased online from different mothers, 74% of samples were contaminated with bacteria and 21% of samples contained cytomegalovirus (CMV) bacteria.

It’s important to be informed when making feeding decisions for your preemie. If you have any questions about donor milk or your baby’s nutritional needs, speak with your baby’s healthcare provider.

Knowing your family health history may help your baby

Wednesday, November 18th, 2015

Family at Thanksgiving dinnerRecently I had an appointment with a new healthcare provider and had to complete a health history form at my first visit. It was 3 pages long and took me about 20 minutes to do while in the waiting room. As I was sitting there, I realized that I didn’t know the answers to some of the questions, especially about my relatives.

Was this really that important?

In one word? Yes.

A family health history (FHH) form is a record of health conditions and treatments that you, your sisters, brothers, parents, aunts, uncles, grandparents and great grandparents have had. It can help you figure out the medical problems that run in your family. Knowing your FHH may just save your life. It may also have a direct effect on your baby’s health.

How can a FHH form help your baby?

The FHH form will help your provider see if any of the conditions or diseases that run in your family will affect your baby. For example, premature birth can run in families. And, certain conditions such as diabetes or high blood pressure put you at a higher risk to have a premature baby.

If you and your partner complete a FHH form and share it with your prenatal provider, you may learn about the health of your baby before she is born. The earlier in your pregnancy that your provider is aware of health conditions, the sooner your provider can decide on treatments for you.

It would be even better if you could complete and share this information with your provider before pregnancy, at a preconception checkup. This way, your provider can help you become as healthy as possible before pregnancy.

Use our FHH form

Here is a form that you can print out and complete.  Print one copy for yourself and one for your partner/spouse. We suggest you take it with you to family gatherings (Thanksgiving anyone?) and ask your relatives to help you fill in the blanks. You may very well find out information about diseases and conditions that run in your family and put you at risk. Early detection is often key in successfully managing a disease.

Here are tips on how to gather information from relatives.

Knowing your risk for certain conditions and that your provider is on top of treatment options, should put your mind at rest. And, knowing you are doing your best to take care of your baby’s health should make you feel even better.

So, when you sit down to apple pie, start a conversation, and fill in your FHH form. The information you share with your family may make a positive difference in everyone’s lives.

Have questions? Text or email us at AskUs@marchofdimes.org.

Crazy luck – one mom’s story

Tuesday, November 17th, 2015
CharlieNICU (2)Today, in recognition of World Prematurity Day, we are honored to share this post written by a mom of a preemie about what Prematurity Awareness Month means to her.

Lots of people don’t know what it means to have a premature baby. I didn’t know either, before I had my baby. Charlie was born  at 25 weeks, weighing 1 pound 15 ounces.

If you had told me that I, a healthy person with not a single complication in my first 25 weeks of pregnancy, would have a baby before I even reached my third trimester – I’m not sure I would have believed it. And yet, it happens, WAY more than it should. Yes, it sometimes happens to moms who don’t have access to good prenatal care. But it also happens to moms who do take care of themselves, who get prenatal care… moms like me.

In this day and age, where doctors can predict, know, and treat so much, the miracles of fertility, pregnancy and prematurity are still mysteries in a lot of ways. In our case, we still don’t know for sure why Charlie came early – and why there were no advance signs that gave the doctors any chance to prepare him for an untimely arrival.

My “incompetent cervix” (worst medical term ever, by the way) was part of the problem, but the fact that my body was contracting and ready to birth a baby at just 25 weeks was another, totally unexplained, part of the problem. And between the time I walked to the hospital that morning and he was born that afternoon, there just wasn’t enough time for them to do anything to keep him inside a few more precious days. Those days really are precious, too. That early in gestation, every week increases the chances of survival a lot, and likely reduces the number of complications the baby is going to face. Unfortunately for us, by the time they knew I was in labor, there was no stopping it or even slowing it down.

Our story has a happy ending – at least at this point! Our boy is happy, a total handful, and most importantly, healthy – for the most part, although the hacking cough he has right now might indicate otherwise. Today I picked him up from school, and he and his best buddy (another Charlie) wanted to run wild on the playground a bit before heading home – all that time sitting in a classroom is hard on a first grade wild man!  So they ran – and then they both planted themselves on a bench and coughed and coughed, like little old men. The common thread? Both are preemies. Coincidence that they’re the ones hacking when the other kids are running non-stop?  I think not. I think these former preemie lungs seem to be more impacted by this unusually warm, moist fall we’re having – and by pollen-heavy springs, and pollution, etc. Though our boy grows and grows, his premature past still rears its ugly face here and there.

I recognize that we are CRAZY lucky to have such a vibrant, busy, healthy boy. I think most moms probably reflect all the time on their kids’ successes and strengths and feel pride and joy. But for me, there’s the added reminder of what could have been. I can guarantee you, I take none of these skills and accomplishments for granted. I think ALL THE TIME about the tears I shed over that tiny, struggling baby in the isolette, and how the life I’m living now was the stuff of daydreams back then. And I will never forget where we started, and just how far he’s come.Charlie2015

So that’s it, that’s why this month is important to me. Prematurity awareness is important because it helps people realize that it really matters to support the March of Dimes, which works constantly to reduce the numbers of premature babies born every day. And it’s important because it reminds me to be oh so grateful for how far we’ve come, and how many doctors and nurses and therapists and scientists and family and friends have helped us get here.

Marie lives in Alexandria, Virginia, with her husband and Charlie. Charlie was born at 25 weeks and weighed 1 pound 15 ounces at birth. He spent 85 days in the NICU at George Washington University Hospital in Washington, DC.

 

On an average DAY in the United States…

Monday, November 16th, 2015

10,926     babies are born
1,045       babies are born preterm (before 37 weeks gestation)
874          babies are born low birthweight (under 5 1/2 pounds)
329          babies are born with a birth defect
174          babies are born very preterm (before 32 weeks gestation)
153          babies are born very low birthweight (under 3 1/3 pounds)
64            babies die before their first birthday

Yes – these numbers are talking about only ONE day!

Numbers don’t lie. And these numbers are way too high. In the U.S., 380,000 babies are born too soon every year. Worldwide, 15 million babies are born prematurely each year.

Some babies will pull through without issues or problems, due to medical advances. But there are so many who won’t. Losing a baby due to premature birth is nothing short of a tragedy. And, the enormous stress and strain of having a child with a disability as a result of prematurity, is lifelong.

This is why the March of Dimes is working so hard to solve this complex problem.

We’re getting resultsNICU doctor and baby resized

After decades of increases, the rate of premature birth in the United States has now been on a steady decline for the last several years.

This decline – to 9.6% today (down from 12.8% in 2006) – means 231,000 fewer babies  have been born premature. That’s significant! It also has saved our nation billions of dollars in excess health care costs. But we still have more work to do. Our goal is to lower the preterm birth rate to 5.5% in 2030. When we reach this goal, it will mean that 1.3 million fewer babies will have been born preterm.

You can help

November 17th marks World Prematurity Day, and the March of Dimes and our partner organizations worldwide are asking everyone to help spread the word on the serious problem of premature birth.

Join the 24-hour #worldprematurityday Buzzday.

Join one of our Twitter chats.

Don’t be silent. Every voice counts. Together we can increase awareness and help end premature birth.

Our babies deserve it.

Pregnancy after a preemie

Friday, November 13th, 2015

You may know that having had a premature baby increases your risk to give birth early in your next pregnancy. No one knows for sure what causes a woman to have a premature baby. However, it is important to understand what factors may make you more likely to give birth early and understand how you may be able to reduce your risk.

When you are ready to think about having another baby after you have had a preemie, here are some things to consider:

When to get pregnant again

Getting pregnant too soon after having a baby increases your chance of giving birth early. If possible, wait at least 18 months between giving birth and getting pregnant again. This gives your body time to recover.

Manage preexisting health conditions

Having diabetes or high blood pressure puts you at a higher risk to have a premature baby. Talk to your health care provider about how to best manage these conditions before you get pregnant again. And weighing too much or too little can also be a risk factor. Try to get to a healthy weight before you get pregnant again.

Prevent infections

Having an infection during pregnancy may increase your chance of giving birth early. Always wash your hands thoroughly and practice good hygiene. This won’t prevent all infections, but it can help. Also, get tested for STDs before you become pregnant.

Treatments for preterm labor

Some women may be able to receive progesterone treatment or cerclage in their next pregnancy to reduce their chances of giving birth early again. Talk to your provider to see if these treatments may be right for you.

In the video below, Dr. Siobhan Dolan discusses who may be a good candidate for progesterone treatment:

If you are planning on getting pregnant again, make sure you talk to your health care provider about what you may be able to do to reduce your risk of premature birth. Together, the two of you can make a plan so that hopefully your next pregnancy can be closer to 40 weeks. You can also go to our online community Share Your Story to talk to other women who gave birth early and are planning a pregnancy or are pregnant again.

Have questions? Text or email us at AskUs@marchofdimes.org.

Skin to skin contact helps your baby AND you

Wednesday, November 11th, 2015

Skin to SkinResearch has shown that skin to skin holding, also known as “kangaroo care,” is one way to help stabilize your baby’s body temperature and help his heart rate become regular. It is comforting to your baby, and may help him gain weight. Even very sick or fragile babies can usually benefit from kangaroo care.

It’s good for parents, too. It helps you bond with your baby, which boosts your spirits. For moms, it encourages your breast milk supply, too.

What is skin to skin holding or kangaroo care?

It is when you hold your baby, skin to skin, bare chest to bare chest, in an upright position. Your baby is wearing only a diaper.

Does it have other benefits?

Yes. For your baby…

Skin to skin holding may help lower the risk of infection, improve survival rates, and encourage your baby to spend more time in deep sleep (which is important for growth and good health). It may also lessen your baby’s pain and help with brain development. Kangaroo care may help your baby spend more time being quiet when awake, and less time crying.

For you and dad…

Skin to skin increases the feeling of intimacy between the baby and parent, helping the mom or dad feel connected. Often dads are fearful of holding their baby – skin to skin may promote a sense of empowerment and confidence. It may decrease anxiety, fear and depression and encourages attachment. Parents say it is the most comforting activity they experience in the NICU.

One mom told us she wrote in her journal “Today I feel like a mother for the first time” – that was the first time she held her twin boys skin to skin, 5 weeks after they were born!

Should you ask to hold your baby?

Yes! If you have not yet held your baby skin to skin, ask if you can. Often, the NICU staff is just so busy with other important duties that they don’t think to offer it. Typically, your baby must be medically stable before he is ready for kangaroo care. But, you can do it even if your baby is hooked up to machines.

How much kangaroo care should you do?

The more you can do, the better. It has been shown that skin to skin contact should take place for a minimum of one hour, but several hours at a time are better. It takes a while for a baby to transition from the isolette to chest and back, so you must take that into account. In some countries, parents are encouraged to do kangaroo care round the clock – that’s how good it is for babies!

Still wondering if skin to skin holding is for you?

Watch this video.

Did you experience kangaroo care in the NICU? Please tell us about it.

 

Have questions? Email or text AskUs@marchofdimes.org. We are here to help.